Changing Expectations: Lyra’s Latest

Lyra's feet, dirty from playing in the grass

Lyra’s feet, dirty from playing in the grass

“I recently read that all people with Down syndrome develop Alzheimer’s in their forties or fifties, is that true?” I asked the pediatric geneticist as she examined our two-day-old baby. A few months earlier, I had read a Newsweek cover story about the care of adult children with developmental disabilities. The sentence about Alzheimer’s had leapt out at me even though I had been told there was little reason to suspect the baby I was carrying had Down syndrome or any other medical concerns. When she was born, however, she had several Ds markers—upslanted eyes, a tongue that darted out of her mouth, and sandal toes (her big toes are far from her little toes, almost as though they were attached as an afterthought). Even before we went to the lab to have her blood drawn, we understood that the genetic testing would only to confirm what we already knew. We had known it in our hearts since I had commented, moments after her birth, that Lyra’s eyes looked “kinda Downsy.”

“You know,” said the geneticist, “it’s really hard to predict what you can expect, what with all the therapies they have developed, things have changed so much in the last twenty years for children with Down’s.” That sentence stuck in my head even while the first few weeks of Lyra’s life found us submerged by what having a child with Down syndrome can mean, including finding resources to help us learn what we could about our daughter’s condition and, of course, dealing with her cataracts and eye surgeries. All the while, the geneticist’s words whispered repeatedly in my mind, with all the therapies they have developed.

Entirely Different

The remarkable increase in life expectancy in recent decades was one of the first facts we learned about Down syndrome and it highlights the dramatic improvement in the research, care, and therefore, quality of life for a person born with Ds today. In 1985, shortly after Max and I graduated from high school, the life expectancy for a person born with Ds was just 25. Today it is 60 and that number is expected to continue increasing as modern medical research also continues to advance the understanding and amelioration of Ds. Not only are people with Ds living longer, they are living vastly different lives than they would have half a century ago. In fact, as the National Down Syndrome Congress has shown with their “More Alike Than Different” campaign, today most people with Ds can expect to lead rather, well, “typical” lives.

Why Are Things So Different?

Until the 1960s, most children born with Down syndrome were institutionalized. When I was growing up, it was rare to see someone with Ds. I never had a classmate with Ds nor do I recall any special classrooms for children with Ds in any of the schools I attended. And I am not aware of any families who had children with Ds, which doesn’t mean that they didn’t exist, but those that did were perhaps institutionalized and not discussed.

Institutionalization was a self-fulfilling prophecy in terms of low expectations for children with Down syndrome. Beginning in1964, a study was conducted comparing infants with Ds who were institutionalized to a group that were home raised. The study continued until the children were eight years old and found that children with Ds who were raised at home functioned at higher levels of “mental, motor, and social development on nearly all outcome measures at 2, 5, 6, and 8 years of age.”

It was not until the 1970s that the two major U.S. organizations that advocate for people with Down syndrome, the National Down Syndrome Congress (1973) and the National Down Syndrome Society (1979), were created. Both organizations make clear that caregivers—parents, teachers, friends and extended family—should set the bar high for kids with Ds. Children with Ds most often meet and regularly exceed the goals set before them. The myths on what people with Ds are like and capable of have been falling like scales from our eyes and today there is every reason to expect a baby born with Ds to have a full and productive life, including mainstream schooling, college, independent living, careers, even marriage and (what surprised me the most) driving automobiles. All of which indicates that as a society, we were operating on grossly false assumptions for many decades, tragically so for children born with Ds prior to the 1970s.

Not So Pretty

In the mid-1980s, my father and stepmother worked in a group home for adults with developmental disabilities, including some with Down syndrome. Across the nation, long-standing institutions that had housed people with developmental and physical disabilities were closing and group homes were opening to meet the need to care for many of these people. My parents worked in a freshly constructed ranch-style home, built to house eight residents. In the center of the ADA accessible house was a kitchen and living room, and on both sides of these common areas were four bedrooms, one for each resident.

I was eighteen in the spring of 1984 when I took a Greyhound bus from Tucson, where I was living with my grandma, to Northern Michigan. I had not visited my family since leaving two summers earlier. When my father picked me up at the bus station in Traverse City, the hour long ride to the house was awkwardly filled with fits and starts of conversation. We had not yet talked about why, after living with him and his family my junior year of high school, I had decided to return to Ohio and live with my mother for my senior year. And we never did. Instead, we talked about my half-sisters and other people we both knew. Eventually my dad began telling me about the job working at the group home and we both relaxed. My dad felt like he had finally found his career calling and with his eyes cast on the road ahead of us, he effortlessly described his work, the words pouring like water from a full pitcher.

The day after I arrived, my dad took me to the group home to meet the people he worked with. Many of the residents were in wheelchairs and most were overweight. When my father talked with the residents, introducing me to each of them, I could not understand what they were saying. I tried to be friendly, but the truth was, I couldn’t wait to leave. I didn’t see people, I saw drool and adult diapers.

“How do you work with those people every day?” I asked my dad when he got home, “Isn’t it depressing?” Which was a fair question. Depression was like a card my dad carried to excuse himself for his significant inactions, especially as they related to those of us who, from time to time, would reasonably wish to lean on him. People like his wives and children. Then again, I ask myself, who among us has not risen to his or her better self with strangers while our seamier aspects are saved only for those who know us best?

“You know, Hol,” he told me, “if you got a job there, after a week you would no longer notice the disabilities of the residents. They’d just be the people you worked with, just like anywhere else.”

“But they aren’t like the people anywhere else,” I said.

“Actually, they are. You would soon know them as Jim or Bob,” he said naming a few of the residents at the group home. “You’d know what they like and how they’re doing, just like you would with anyone in any job. And really, Hol, you’d no longer see their disabilities, you’d just see them as the people they are.”

Let me stop and say that I am not upset with the younger me who, the first time I was introduced to severely disabled adults, recoiled. At the same time, my chest physically aches to think that anyone would feel similarly about my daughter when she is grown. My ignorance was ugly, but I did not remain ignorant.

As with many things, education builds awareness, exposure builds understanding.

Loving People

My father worked at the group home until he moved to Arizona in the early 1990s, where he also worked with adults with developmental disabilities. Over the years, I came to feel I knew some of the people he worked with because of the stories he shared. Many had spent their entire lives in institutions, which was at the root of some of their more difficult behaviors. For instance, both my parents told me they worked to get the group home residents to eat their meals slowly and not scarf their food without swallowing. In the institutions, residents were fed in large cafeterias with little oversight and many had learned to eat as fast as possible in order to prevent anyone from stealing their food. Back then, eating at a table in the group home was often a resident’s first experience in family style dining with no threat of bullying.

My dad became particularly close to one of his clients in Michigan. A quadriplegic, Jim found work typing out address labels (this was before computers were ubiquitous). My father jerry-rigged a helmet by affixing the writing end of a pencil above the center edge of the helmet’s brim. With the helmet strapped firmly under his chin, Jim’s head bobbed over an electric typewriter as he used the pencil’s eraser to type out names and addresses on sheets of labels. Jim used the money he earned typing labels to buy gifts for his girlfriend. She lived in a different group home and Jim saw her on weekdays at the adult day care facility they both went to. Like Jim, his girlfriend was in a wheelchair. But on more than one occasion, the two of them somehow managed to get their shoes and socks off and were found sitting away from any activity, their bare feet entangled.

One evening when I was living in Boston, my dad called me from Arizona. In 1995, before cell phones found their way into everyone’s pockets, long distance calls were expensive and, thus, infrequent. Claude was a year old and I’d long gotten over my squeamishness of body fluids. Beyond diapers, I’d thought nothing of holding my baby as he repeatedly vomited on me a few days before his first birthday. Comforting my child trumped the sour smell of puke. Sure, he was a baby, my baby even. But nothing could have made me love him any less than I did including, as I discovered a few years later, a learning disability.

“My friend Jim died,” said my dad when he called. It was the closest I’ve come to hearing my dad cry. Maybe he was crying. I didn’t ask.

“Who’s Jim?” I asked instead and he reminded me of the resident in the Michigan group home. Once he’d moved to Arizona, my dad came home only a couple of times for important events like weddings. When he did, he always went over to the group home where he’d worked to visit Jim. My dad did not learn about Jim’s death until weeks after his funeral, but even if he had learned immediately, he would not have been to leave work and travel so far on short notice. Sitting in my kitchen in Boston, I listened to my father as he talked about his friend at length, a telephonic memorial service of two.

Those Therapies They Have Developed

One of the common issues that nearly all children with Down syndrome face is hypotonia, or low muscle tone. It can cause them to have trouble eating, speaking, learning to sit up, crawl, walk and run. (For more on the challenges facing babies with Ds, consider clicking the link for this well-written post from the blog, “Noah’s Dad.”

As expected, Lyra does have hypotonia, but I believe it is only mild to moderate. She does not spring with wirey muscles like my boys did when they were infants and babies, but neither was Lyra ever a “limp noodle” as so many babies with Ds are described. When she was four months old, I began taking Lyra to both speech and physical therapy at an office recommended by our pediatrician, Dr. M.

Physical Therapy or Breaking It Down to Pull It Together

When my dyslexic sons, Claude and Jules, learned to read, we had to break down the cognitive understanding of sounds and symbols. With Jules, I had to spend months making up silly rhymes and alliterative phrases so that he could hear the similar sounds. Once letters and their sounds were memorized, all combinations had to be taught. And because the English language is comprised as much of exceptions as it is rules, countless “sight words,” or words that don’t follow the rules, had to be memorized too.

So it is teaching Lyra to move her body through space—something I took entirely for granted with my four previous children. The first thing Lyra’s physical therapist, Heather, showed me was to pull Lyra up into a seated position by her wrists. Lifting Lyra slowly, her neck muscles engage and get a work out. By the time she was five months old, she was not only holding her head on her own but she keeping it upright as we bounced her on an exercise ball. Yes, the exercise ball is a big part of her PT, which for now has the overarching goal of getting Lyra to sit up and crawl. Lyra gets a better abdominal and arm work out each day than I do (though my muffin top and bat wings tell me I need to correct that).

Lyra loves to jump!

Lyra loves to jump!

Little things feel like milestones. Things like Lyra jumping in her bouncy seat, her head held erect as she springs her body up and down, or rolling on the floor from her back to her tummy and over again onto her back, or purposefully reaching her hands and arms towards a toy she wants, or sitting upright in the middle of our laps where we can catch her when she lists. Lately, Lyra’s been bearing weight on her hands and arms when she is on her tummy, a sure sign that crawling is coming. We want Lyra to crawl, and crawl for a long time, not only so she can move herself to where she wants to go, but also because of the well-documented, kinesthetic brain development that crawling enhances.

Speech Therapy or Everything to Do with the Mouth, Including Eating

For two months, Lyra’s speech therapist helped us try to teach Lyra to take a bottle. When she was nearly six months old, we all gave up. This is the first of what I suspect will be a lifetime of wondering whether something about Lyra is simply her personality or her Down syndrome. With the bottle, I believe it is personality. She breast feeds like a champ, which requires more muscle strength than bottle feeding. However, the time spent with the speech therapist was not invaluable as we learned many mouth exercises that we continue to practice. These exercises, mostly mouth massage—both inside and out—have helped Lyra “organize” her mouth. As a result, her tongue thrusting has greatly reduced and she has had no trouble learning to eat solid foods from a spoon.

Later this month, we will revisit the speech therapist to evaluate Lyra’s speech. But at nine months old she has long blown raspberries, babbles what sounds like the cadences of a distance conversation and then, as if providing commentary on the speech of those around her, will say, “Blah, blah, blah.”  These are all very good signs for speech development.

My Head and My Heart

When I hold my baby girl, I do not see her Down syndrome, I see my daughter. We all adore her and love to make her laugh, but she is mostly like any other baby. Jules delights in walking his fingers up Lyra’s sides to her armpits to get her to belly laugh. Leif holds Lyra’s hand and jumps with her as she hops up and down in her bouncy seat. All too often when they are playing on the floor, Lyra manages to grab a fistful of Leif’s long hair and pull it with all her might, causing her brother to scream in pain. The big boys send Max and me on dates, willingly keeping both of their younger siblings, caring for them with a naturalness that belies experience.

But here is a true confession that makes me cringe: I am still a work in progress. I know in my head that when she is older I will see and love Lyra as I do now. Maybe she will be as accomplished and “mainstreamed” as the adults with Ds in the “More Alike Than Different” video. But maybe she won’t.

I recently saw a lovely child with Ds, who was perhaps nine-years-old, happily engaging other people, especially little children. But when she spoke, I could not understand her and in that moment, and I felt the scabs peel off of my heart to reveal how attached I am to speech. I had to take Lyra to a corner of the room and nurse her while I quietly wept. I looked down on her dainty round head and, wondering if she’d ever speak clearly, I felt smacked by what is not alike, but different, about my child with Down syndrome.

A few moments later, a young mother whose son is only weeks older than Lyra came and sat by me. She has a soft voice with a southern accent I cannot place, but which calmly drew me out of my sorrow. She told me her child could not keep food down because of reflux and he was chronically ill because, as they had recently discovered in a swallow study, he aspirates his liquids. A first time mom, this woman’s dedication to her child is both fierce and gentle. Knowing how overwhelmed I was with my firstborn, who had no physical challenges whatsoever, this woman’s tender acceptance of her child and his mighty challenges guided me back to my center and I stopped leaning into my fears of the unknowable future.

We are a very verbal and literary family and we all enjoy talking, reading and writing. Two of us have made careers out of it and Claude may well too. My head tells me that Lyra will communicate effectively because she already does. She is not shy and her desire to interact with other people will propel her abilities to speak and/or sign (just as my own extroverted nature helped me learn French when I was a student in France). As her life unfolds, my heart will catch up with my head and I will continue to see my daughter as the person she is, not the extra chromosome she has.

What gets me into trouble is forgetting to stay in the moment.

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The Spring of Chaos

After what felt like a winter without end, spring has finally arrived.

I typically expect November and early December to be the busiest time of the year. For the most part, I don’t think of the holidays as something to survive, but when they are over, January seems indulgently quiet. A lady farmer, who lives across the street from the Waldorf school, once told me that January is the one month she relaxes. With the crops harvested and slaughtering season completed, it is too early to sugar the maples or prepare next season’s crops. Sure, there are animals and machinery that need tending, but mostly life is as quiet as snow falling on a windless day.

Then spring hits and there is no rest for the weary, be they farmers or mothers and I don’t know why, but it surprises me every year. Last spring, we had an unusually warm March, and found ourselves in our gardens seemingly moments after ski season had ended at the local slopes. It was our first spring in the new house and we abruptly discovered that the yard and gardens had been cursorily tended for a couple of years.225px-The_Blob_poster Translation: an abundance of weeds of all varieties—milky, woody, low to the ground and high to the sky—appeared as if by magic after the first warm days that March. Pregnant with Lyra, I was not much help in the garden. I trimmed dead branches off of the hydrangeas but otherwise mostly pointed out the weeds to Max because bending over made my heartburn rise. At the end of our driveway, Earth N Wood landscaping company dropped mountains of mulch large enough to be seen on Google maps. Seriously. For the rest of the spring and summer, Max pulled weeds, moved plants, mulched beds and ripped up English ivy, which grows with the destructive rapidity of the title character of The Blob, the 1958 Sci-fi movie classic (extending the metaphor: Max=Steve McQueen).

Possessed by Possessions

The long summer turned into a warm autumn and I thought I’d never get Max back into the house. But as I mentioned in What We Keep, finally in December, we resumed tackling the ongoing project of merging the possessions of two households into one. For this reason, I was not entirely unhappy to see winter linger with hopes of extending our focus on building shelves, emptying boxes and taking things to Goodwill and Habitat for Humanity’s ReStore. Larger items, or things we haven’t decided whether to keep or part with, have been hauled to the back garage for re-evaluation in the summer when we work on de-cluttering the garage. I imagine some day our spare time will not be primarily pre-occupied with managing our possessions as it has been for the past two years. But I cannot predict when that day will arrive.  And I ask myself if a deadline is in order.

Before the weather turned warmer, however, our weekends no longer found us like ants busily working in a nest while the frigid winds blew outside. Since Claude came home for his spring break in March, all of us have been pulled back to life outside of our home. Annual spring benefits for our favorite non-profits started popping up like dandelions in the lawn and last week alone, three were on our calendar (we made it to just one). Track season began at the Waldorf school and, as all parents who’ve been there know, any sport that employs the word “meet” as opposed to “game” is a sport that will relieve you of an entire day every weekend of the season. Tax season took away at least two of our weekends. And through it all, Lyra has at least one appointment a week with her doctors or therapists or county caseworkers or the Down syndrome clinic. In order to manage our schedules, emails go unanswered, calls unreturned and spontaneous get-togethers can’t happen. I start each day by looking at the Google calendar. And when I forget to, as I did this past Monday, I unexpectedly found the Summit County DD case worker and physical therapist on my doorstep at nine in the morning. Thank heavens I was dressed.

Far from Perfect

For me at least, it’s been hard to find my balance these past two months. I think of a quote I recently saw: Make sure to meditate at least fifteen minutes a day unless you are busy. In which case, meditate an hour a day. I smiled when I read this knowing, however ironic, that it is true. During these hectic days, meditation is like a staff planted firmly in the earth, a pole that does not stop the chaos, but rather allows me to stand still and observe the chaos without getting swept away by it. I am reminded of the wizard Gandalf who powerfully pounds his staff on the ground with one swift movement as he forcefully tells the demonic balrog, “You shall not pass!” Gandalf does not appear to kill the balrog, but he does prevent it from consuming his friends, insuring that they continue on their journey.

In one of my earliest posts, I described the mom-blogs that intimidate me with stories and pictures of serene adults with sweet children in clean (handmade) clothes making butter with the milk from the goats they keep in their yards while their kitchens look as organized as Martha Stewart’s but more artsy, an aesthetic cross of Waldorf schools-Garnet Hill catalogs-Merchant Ivory films.

Those moms probably don’t forget to go to the monthly meetings of their Down syndrome support group. Certainly not two months in a row. Nor do they forget to patch their daughter’s lazy eye (I won’t say how many times) and I imagine they do an hour of physical therapy three times a day so that their child with Ds meets all the “typical” baby benchmarks, like sitting up at six months. Those moms don’t ask with panicky voices at 5:30 p.m., “What are we going to feed everyone for dinner?” because they have organic and delicious meal plans extending weeks in advance. And while their kids may occasionally pull outfits out of a basket of clean laundry waiting to be folded, I doubt they ever dig into the dirty laundry to seek the least muddy pair of pants to wear to school that day.

True Confession: I sometimes think about what my life would be like if I only had one child. Or two. Or three. Or four. I consider what I would be doing with my days if my only child were away at college. Or if I had just one at home and the other at school, and down the list I go. I don’t think of it often, nor do I dwell on it when I do. This in no way means I ever wish to be without any of my children in this life and pray that they all die after I do, because to lose any of them is something I do not ever want to imagine, let alone experience. No, when I think of life with fewer children it is in the way Robert Frost describes life in “The Road Not Taken.” Frost acknowledges that our choices form our lives and wonders how different choices would have forged a different life. Possibly, I wonder, even molding the person so differently as to make him or her someone else entirely. In the film Sliding Doors, Gwyneth Paltrow’s character has two different lives based upon whether she misses or catches her train to work one morning. What I do know is that last year, before I had Lyra and I was working at the Waldorf school, I was not writing with any regularity. For a number of reasons, she keeps me at home and I make it a priority to write every week as much as I can.

As Good As It Gets

Last night we sat on our veranda and looked down at Jules and his friend Liam. They had set up a tent on the lawn and were standing next to it looking at the stars with one of our telescopes. Still in his Old Carolina Barbeque uniform, Hugo was relaxing as Hugo often does—by playing the guitar. The babies were asleep when Claude, who the day before had returned to Ann Arbor to take his last final, pulled up in the Matrix. I called out to him as he walked into the backyard, surrounded by the boys and dogs, and told him to grab a beer and join us on the veranda. After he’d joined us, I asked Claude how he feels now that he’s completed first year of college. “I feel a lot less anxious about things and, you know what? I am really glad I’m at Michigan, it’s a great school.”

Jules and his serviceberry bush

Jules and his serviceberry bush

Our lives at Whoopsie Piggle, the name of our home as much as this blog, continues to shape us just as we shape it. Our budding naturalist, Jules, has been eager to transform our yard and gardens to attract a variety of birds using native plant species. Max is his willing cohort in this venture and last fall they found a beautiful serviceberry bush on sale at a local nursery and Jules contributed $30 of his own money towards its purchase. It is now blooming and we are all eager to replace more non-native species with serviceberry bushes, spicebushes and red buds. But it is primarily Jules and Max who plot out and execute their now mutual dream of having a sustainable garden filled with native species, mirroring their own relationship in which stepson and stepfather are no longer foreign to one another but belong to each other as families can.

I enjoy being able to help in the garden this year with Lyra often nearby on a blanket. Leif, who turned three in February, already loves the yard where his dad built him a big sandbox last year. We had been trying to decide where to put a swing set that a friend has offered to us for the price of taking it out of her yard when then Hurricane Sandy took out two trees in the backyard. Using his new chain saw, Max is clearing the way to make our park-like yard even more kid friendly. With Claude home and helping, it won’t be long before we have our own playground.

Abiding Chaos

With Claude home, the large house is more full, but not entirely. We keep one bedroom as our guest bedroom. The plan is that one day it will be Lyra’s bedroom. With lavender walls and white trim it is a cozy room that is filled with afternoon sunshine and has its own bathroom where mid-century black and mauve glass tiles line the lower half of the walls. One friend in particular regularly comes over for dinner and stays late knowing she can sleep over in the guest suite. Early on, she stayed with us for a few months when she was between apartments.

Today we are awaiting the return of our friend, Nancy Wolf. Several years ago, Nancy left Akron to move to California where she followed some of her dreams. Now she is returning because her grandchildren are here, one of whom was born last December. While she resettles in our little city, Nancy and her two Labrador Retrievers will be staying with us. Will it make things a little more chaotic? Perhaps. But Nancy has stayed with us many times over the years when she’s journeyed back to Ohio. My kids love her. Just as important, I think, is to shake up the status quo and expose my children to other adults with whom they have different conversations than they do with us and also different from the conversations they have with adults who don’t live with us. There are as many ways to live life as there are people living it. Many of my choices in life may not be those my children are interested in for themselves. I’d be surprised if they were.

Nancy reads Whoopsie Piggle and often makes comments. After she read “What We Keep” she quickly sent me an email politely asking if we could hold off on shedding any more furniture until she returned. Truly able to let go of possessions, Nancy got rid of almost everything she owned when she left California last month, just as she had when she moved out there seven years ago.

The past nine months have not been without struggle as we learn to manage a family of five children with an eighteen year spread. Now we are upping that ante for a time while our friend and her dogs stay with us. But when she leaves, she’ll clear out most of the furniture and extra housewares stored in our back garage.

If we’re lucky, that is.

It Could Be Worse

All of this reminds me of a joke. There was a woman who lived in a small house in a shtetl. The woman was happy with her life until her widowed mother-in-law moved in with her and her husband. The mother-in-law had endless notions on how the woman could keep the house cleaner, make the meals tastier, teach the children better, and so on. Frustrated, the woman went to her rabbi and told him how her mother-in-law was making her life miserable. “Go home and move the cow into the house,” he told her and she did.

A week later, the woman went back to the rabbi, more frustrated than ever. Her mother-in-law was still unabashed in her running commentaries and now the cow was making it impossible to get around the small house. “Go home and bring your chickens into the house,” he told her and she did.

A week later, she again returned to the rabbi, at her wits end. “Go home and bring the goose into the house,” he told her and she did.

Days later, she came tearfully to the rabbi, telling him she couldn’t take it any longer, life at her home made her despair and she didn’t know if she could face another day. “Go home and move all the animals out of your house,” he told her and she did.

When the rabbi stopped by the woman’s house the following week, he asked her how she was doing. “I have never been happier,” she told the rabbi, “ever since you had me move the animals out of the house, my life has been so easy!” The woman made no mention of her mother-in-law who was sitting in the corner audibly complaining about anything she could.

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Lyra’s Latest: Where’s the Poop?

Prescript: In July of 2013 we learned about Fruit-Eze. A jam-like product made entirely of fruit, it worked wonders on the constipation that routinely flared up even after Lyra began taking Synethroid. She has a tablespoon each and every morning. Available online, Fruit-Eze is nothing short of miraculous.

Warning: As the title indicates, or so I believe, expect baby poo descriptions in this piece. Squeamish Readers, please proceed with caution.

Constipation Fixation

Lyra loves the bread at Macaroni Grill

Lyra loves the bread at Macaroni Grill

“It could be her thyroid,” said Dr. M at Lyra’s six-month check up. “It’s standard of care for Down syndrome to check it now anyway.” I was at Lyra’s six-month check up and, just as I had at her five-month check up, I explained to Dr. M that iron supplements had constipated Lyra. What I hadn’t told Dr. M was that ten days after we started giving Lyra the multivitamins with iron, we had stopped. Dr. M very strongly recommended giving Lyra an iron supplement but Lyra’s cereal has just as much iron in it as the vitamins. Thus, I didn’t see any reason to continue dosing her with the vitamins when I just knew they had caused Lyra’s unrelenting constipation.

Here’s what I know about constipation: If you have it, the only people you might tell is your significant other or your doctor. Then again, you might not. But if it is your baby who is constipated, that little person’s bowel movements will consume your thinking, day after day, and you will talk about it to anyone who will listen. Nearly all else in your life becomes less important than your baby’s bowels. It isn’t even necessary to document when the baby pooped last. You know the date like you know your own birthday. And this is because a constipated baby is generally a very sad baby. The term “colicky” isn’t about temperment, but describes a baby who has irregular digestion and is pretty grumpy about it.

I learned all about this back in the 90s with my Hugo, whose birth was by far my most difficult. Weighing in at 10 pounds and with a chest circumference that was larger than that of his big head, we called him “Huge-o” for several months. He also got stuck on his way out of the womb. After I had delivered what seemed like his soccer ball-sized head, the midwives realized he had shoulder dystocia and while I puffed like a locomotive going up a steep hill, the midwives safely repositioned him. It took a while, but he came out just fine. A couple of days later, however, I developed a nasty uterine infection and was put on Augmentin, a big-gun antibiotic. It cured my infection but, through my breast milk, it also trashed Hugo’s digestive tract. He cried nearly every waking moment for the next five months. Born in late November, I drove him in the car on bumpy roads to soothe him. If he fell asleep, I pulled into parking lots, parked and, with the car running, worked on crossword puzzles. Three-year-old Claude, in the seat next to Baby Hugo, was under strict orders of silence if the baby fell asleep. Though more often than not, Claude also nodded off after a long drive to nowhere in an overly heated car.

Hugo cried because he hurt. He would go nine to twelve days without a bowel movement. I felt über-environmental—using cloth diapers was a breeze with Hugo; rarely was there any messy clean up. Just weeks of easy-to-wash, low-odor, pee-pee diapers. When he did go, however, Hugo blew like a volcano. Between the volume and the force with which he expelled it, I would often first spy Hugo’s poo at the nape of his neck, just above his collar. Everything would have to come off and at least twice, when strolling him on the tile floor of the Lane Avenue Mall in Columbus, I had to dash into Baby Gap to buy him clean clothes (you would think I kept an outfit on hand, but since it was so rarely needed, I would get lulled into lugging very little gear).

Hugo eventually normalized, but I recall those early days with an element of Post Traumatic Stress Disorder. It may sound like I’m joking, but I’m not. For months, Hugo’s shrieks of pain and subsequent nursing frequently punctuated what little sleep I got. During the days, I could not accomplish much of anything other than trying to calm him, which meant holding him around the clock or driving him on bumpy roads. I have heard that psychologists compare a lengthy episode of parenting a colicky baby with torture, and I believe it. With the pregnancies of every child after Hugo, I prayed for anything but another colicky baby.

Lyra, like all my other babies except Hugo, quickly and regularly produced the kind of lovely poos that babies who are exclusively fed breast milk produce. The color of Dijon mustard, they smelled yogurty, and she produced them two to three times a day. That is, until we gave her the vitamins that included iron. And then, snap, she just stopped going. After five days, I gave her a pediatric suppository and what came out was dark and tar-like. Damn iron I thought. After ten days on the vitamins, we stopped and figured that in a week her stools would once again be mustardy and regular. But that didn’t happen. We began working with her diet, first giving her prunes to eat, then, a few weeks later, switching her cereal from rice (which can be binding) to oatmeal. And we began giving her a daily dose of algal DHA because it is good for brain development. It is also oily and should help move things along. We regularly massage her belly and her day care provider gives her Reiki treatments. She has never been fed formula, which also can bind, but exclusively drinks breast milk.

All to no avail.

Instead, Lyra’s weekly bowel movements have become heart-breaking spectacles, which the whole family often attends. After several days without a stool, Lyra’s abdomen tightens like a rock slab as she fusses inconsolably. Rarely does Lyra pass the stool on her own now and she has become what I call “Our Little ATM.” I pop in a small glycerin suppository and in return, Lyra strains and pushes out black pellets. We hold her legs and massage her tummy and her brothers coo to her soothingly, while she wails with pain and sometimes, just before a hard pellet of poo erupts, droplets of blood seep through her anus. The only comfort for us is how quickly Lyra settles after everything’s passed. Then five days later, it starts all over again.

Dr. M Scores Again

The reason Dr. M insists Lyra take iron is because anemia, or iron deficiency, reduces the oxygen getting to the brain. And a brain getting less oxygen risks a drop in IQ and with Lyra’s Ds, it is imperative to avoid additional hits to her IQ.

At first blush, it may seem that I am anti-medical. I had all of my children at home. Until Lyra, I never participated in the American Academy of Pediatrics schedule for well-baby visits. I’m not interested in taking a healthy baby to see the doctor. And also, I don’t follow the AAP’s vaccination schedule, as I mentioned in “Finding a Pediatrician, or The Continuum of Jewish Women.”

But I am not anti-medical. In fact, I am deeply appreciative of modern medicine and all that it can do. Had Claude been born 50 years earlier, he likely would have died of dehydration by his first birthday, which was a common cause of childhood death prior to the 1950s when IVs became widely available. Claude had a vomiting virus and in less than 24 hours had shriveled up. The skin on his stomach stayed wrinkled like a raisin’s after a doctor pinched and released a one-inch section between her forefinger and thumb. Claude was rushed to the emergency room and given fluids intravenously.

Had I given birth to Hugo 75 years earlier, I might have died from my uterine infection, as antibiotics only became available in 1935. And certainly, had Lyra been born just a handful of decades ago, her cataracts would not have been surgically removed and she would have been blind.

But I find that the medical professions are often in the position, whether or not providers like it, of treating the symptoms of illness without effectively addressing the underlying causes. We observed an example of this when Lyra had her eye surgeries. Both times as we waited for Lyra to awaken in the post-op recovery room, most of the other patients were recovering from tonsillectomies. The cries of these children were as raw as the pain in their throats.

“I thought they didn’t do many tonsillectomies anymore,” I said to the nurse attending Lyra after her second surgery.

“Oh, no, they have been on the rise. It’s the bulk of what we see in here,” she said and when I asked why, she told me, “It’s sleep apnea. So many children are heavy now and they develop sleep apnea.

“So they take out their tonsils?” I asked.

“Yep,” she answered.

It shocks me that children should undergo surgery, which is hardly without risks, for something that is correctable with diet. But physicians have little to no ability to change what is likely an entire family’s eating habits in order to get one child to lose enough weight to resolve that child’s sleep apnea. So they quickly fix the symptom by surgically opening the airways with tonsillectomies.

That is not how I live. When my children or I have a health concern, I consider what might be the source of the issue and seek to resolve it. For example, Jules has had unremitting nasal drainage all this school year. I could just give him antihistamines, which I have now and again when he couldn’t sleep. But as the problem appeared systemic, I have worked with him to clear out sugar, wheat and dairy from his diet to see if that helps. Two weeks later, he stopped complaining of drainage.

And this is why we have not treated Lyra’s constipation with laxatives, which would only further decrease her body’s ability to properly process and eliminate her stools. Her constipation, as horrible as it is, is not her problem but rather the symptom of a bigger problem.

Hypothyroidism

In the case of Lyra and her constipation, it seems the introduction of iron was simply an unrelated factor, even though the timing suggested otherwise. As it turns out, the blood tests confirmed that Lyra has developed hypothyroidism. Her actual thyroid levels were fine. But the thyroid gland is the lackey of the pituitary gland. Like a shift supervisor at a factory, the pituitary gland monitors the thyroid gland’s output and responds by secreting something called TSH. TSH tells the thyroid gland how hard to work. When it wants the thyroid gland to work harder, the pituitary gland sends out more TSH. In Lyra’s case, her pituitary gland was making, according to some charts, twice as much TSH as is normal in order to get her thyroid gland to produce the proper amount of thyroid.

We were referred to the Endocrinology Center at Akron Children’s Hospital where I asked, just to be sure, that they retest Lyra’s blood. They found the same results as Dr. M’s lab. We were seen by a nurse practitioner who, after having me describe Lyra’s symptoms, asked if anyone else in the family had suffered from constipation. I told her about Baby Hugo and she said, “Oh, I tell parents it’s not so much how often they go, but what the consistency is. If we have mashed potato stools, it’s okay, but the hard pellets are not.” Had I known that sixteen years ago!

On April sixth, we began giving Synthroid, a synthetic thyroid replacement drug, to Lyra. At first, we smashed a tiny pill between two spoons, mixed the resultant powder in a cup with a teaspoon or so of breast milk, drew it up in an oral syringe and gave it to her. On April seventh, our clever girl began blowing raspberries when she felt the plastic syringe touch her mouth. Between what she sputtered out of her mouth and the reality that some of the powder remained in both the cup and the syringe, we weren’t sure how much of her dose she was actually getting.

Lyra looking like a big girl next to her newborn buddy, Cora.

Lyra looking like a big girl next to her newborn buddy, Cora.

Beginning this week, I now slide the small pill down her throat with my finger and promptly nurse her. She gagged a little the first time, but hasn’t since. We know she has the full dose in her body and once she’s been on the Synthroid for six weeks, we will have her blood tested again. After that, we get to visit the Endocrinology Center every three months until Lyra is four or five years old. It is quite likely that Lyra will need to take some form of thyroid replacement her entire life. I am just glad we caught it so soon, since thyroid can affect so much, including many things that are already concerns for people with Down syndrome.

For now, we are looking for softer stools, however often they pass. And perhaps, too, our wee teeny peanut will get a little bigger.

Update, April 21, 2013:

“You want to smell something wonderful?” I asked Max this afternoon, before sticking Lyra’s behind in his face. He was working at his desk in his home office when I brought Lyra in from the minivan after returning from Jules’ track meet. As soon as I’d plucked her from her car seat, I’d smelled it: pungent, breastmilk poo.

Sure enough, when I opened Lyra’s diaper a few minutes after making Max sniff her derriere, I was greeted by the lovely site of an oh-so-typical poo. That is, typical for a baby who is exclusively breastfed–mustardy orange with a butyeric odor, kind of like movie theater popcorn–who isn’t suffering from hypothyroidism.

Fifteen days after she began taking thyroid replacement drugs, our girl has regulated. The days of rock hard pellets are behind us, or so I pray.

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On Writing About Family

Good Busy

Whoopsie Piggle has not had a new post in over two weeks and this has been for two good reasons. First of all, I have two separate freelance projects that have kept me very busy. In some measure, I credit Whoopsie Piggle for this. Or rather, in the process of writing Whoopsie Piggle, I publicly declared my desire to earn my income by writing. And I have a theory, not so unusual, that you can’t get what you want if you don’t clearly state what that is. I don’t mean general platitudes such as world peace, my children to be happy, to have a successful career, or whatever. The more declarative and precise the intention, the more likely it is to happen. Curiously, however, generalizations seem to manifest just fine in reverse. Tell yourself your life sucks and it’s a fair bet that not only does your life suck; it will continue to suck until you change your thinking.

I’ve been clear for the past six years on what I want in a partner and homelife. But it has taken me longer to clarify my career goals with the same specificity. This is, in part, because I have felt shame for wanting a creative career. Writing, to be a writer, sounds selfish if for no other reason than there are few obvious ways to make money as a writer. Journalism and teaching at colleges were practical considerations for writers in the recent past, but neither option is what it was even ten years ago. Journalism is a field scrambling to respond to an unexpected brush fire, otherwise known as the Internet, which has consumed all aspects of the publishing industry. I am qualified to teach at the college level, but so are multitudes of other writers and with so few jobs available, the unspoken requirements have risen. For the most part, a tenure-track job teaching writing requires not only an MFA but also a published book and preferably a PhD. Maybe someday I’ll have these credentials, but not this year.

So while I’m not yet earning a living wage by writing, what I am earning helps me with the choices I make for my children. Choices like college tuition for Claude, music lessons for Hugo, and private school and tutoring for Jules. When I was a twenty-something, living on a shoestring was not a problem because I was only responsible for myself. Now I am the mother of five children and raising them well is a priority that conditions everything I do. Which is probably why I kept returning to my family, specifically the children, as I thought of a new project in the months prior to launching Whoopsie Piggle. Possibly a book, I had thought. One about the journey the big boys and I have taken over the course of their lives and how we’ve all come to embrace this new dynamic, a new family in fact, with the addition of Max and then Leif and finally, Lyra.

I know several non-fiction writers who purposely avoid writing about their children. To keep their children’s lives sacrosanct from the public, they hang velvet curtains in their stories, blocking all but the fact that their kids exist and sometimes not even that information comes through. I have heard writers say their teenaged children would be mortified to discover themselves as a character in their parent’s work.

Not my kids. I write about how they have shaped me, and my life, as much as I have had any impact on them. I am mindful of what I write and keep as a primary point of reference that my children will one day have careers of their own. Rather than complaining about being creative fodder, for now the boys enjoy reading about themselves. Particularly Hugo. If I have come at all close to accurately capturing his personality, this should surprise nobody.

Who owns memories?

My last essay, “Shattering Patterns,” was about fathers and firstborns—me and my dad, Claude and his father, as well as Claude and me. For though I have long heard faint echoes in my life, writing is the one way I know to find form for the abstract, which was particularly true of that essay. Writing it helped give specificity, once again, to my observations and thoughts. As his mother, I cannot imagine not wanting a close relationship with Claude. On the other hand, I have long worked to overcome the feeling that it was my fault my father and mother were never available for parenting or that they, like Claude’s father, did not want a close relationship with their child. And while writing about Claude’s relationship to his father alongside writing about my own relationship to my father was illuminating for me, I was not so sure Claude would want such a piece published.

“You could have been more revealing,” Claude told me after he read “Shattering Patterns.” “No, really,” he continued when I questioned him. “I wouldn’t have minded if you added a link to my poetry, you know to show that even if I don’t think about my dad, there’s still stuff in there.” As he reformulates more patterns, I see Claude transcending both of his parents in all that he does. Which is as it should be.

What I didn’t expect, but probably should have, was for someone to be upset over a line about my experience. “I never saw your father let you inhale marijuana smoke!” said a clearly upset family member, and I believe this person completely. I explained, however, that I quite viscerally remember breathing in smoke from a paper bag. I also remember talking about it with friends at school when I was still quite young. This is not a flashback memory—it has always been there.

What outsiders may find more shocking is this: I am not troubled by the memory of being given marijuana smoke as a young child. I have not nor would I do the same to my children. Legal antihistamines, however, such as Benadryl, are commonly administered to young children. If all things were equal in terms of legality, I’d be similarly concerned with the use antihistamines as with marijuana. But for now, in most states, they are not legally comparable.

Should I have skipped adding the sentence about marijuana? Was I unnecessarily revealing, particularly when I don’t find the information that shocking? Perhaps. I think too, that 30 to 40 years later, many seem to forget how drug saturated the late sixties and all of the seventies were. While many of my friends’ parents were not smoking pot, several were. And I regularly meet people who recall similar hazy days of partying parents. What might sound shocking today wasn’t so unusual then. A few family friendly movies from that time, films like The Bad News Bears or Little Darlings, give testament to how much times have changed.

Veteran Road Warriors

Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.

Then: A photo of the boys (ages 13, 10 & 7) and me, taken by a stranger, in 2007.

I stated that there are two good reasons why Whoopsie Piggle has been back-burnered this past two weeks. Besides good work writing, we went on our first vacation in nearly two years. In four days, we packed in a trip like the boys and I used to regularly take: in a vehicle filled with food and audiotapes, we headed out for a National Park, this time Mammoth Caves in Kentucky.

“Hugo just can’t stop picking a fight with you, can he?” said Max the night before we left. It was true. Hugo had been in rare form for two days. As I cleaned the kitchen after dinner that evening, Hugo launched into me like a district attorney, pointedly telling me he remained disappointed by his sixteenth birthday, which was the day after Thanksgiving.

“I don’t ever want to spend my birthday in the car for eight hours again!” he said, referring to the fact that on the day he turned sixteen, we had driven home from Northern Michigan, where we’d spent Thanksgiving with the children’s grandparents. We also stopped at the Toledo Museum of Art and saw a marvelous Edouard Manet exhibit and took everyone to dinner at the restaurant of Hugo’s choosing. That weekend, I drove Hugo to Guitar Center and bought him a pricey recording device he had long lusted after. I had waited until after his birthday to buy it during the post-Thanksgiving sale, which Hugo had agreed to at the time.

“What are you talking about?” I asked him, “We came home on your birthday because you had to work the next day! None of us wanted to leave early, we did it for you.”

“Never mind,” he said in a way that indicated he wanted me to do anything but. Sure enough, half an hour later, he appeared in our bedroom as Max and I were going to bed. “I’m not mad about my birthday, I just didn’t want to spend it in the car!”

I again tried, but got nowhere with Hugo. Finally, Max said to him, “Okay, that’s over, Hugo. So what do you want us to do now?”

“Just promise we won’t travel on my birthday ever again,” he said. We promised and he left our room.

“He’s sleep deprived,” said Max as he turned out the light. He was right. Earlier that week, Hugo had gone to New York City for three days with a school group and after arriving back in Akron on a bus at 7:30 in the morning, he had to turn around and go to work both days before we left for Kentucky.

Our family today (minus collegiate Claude), also photographed by a stranger.

Our family today (minus collegiate Claude), also photographed by a stranger.

A day into our trip, Hugo was a different person. On our way down, we’d listened to The Old Man and the Sea, which was assigned spring break reading for his English class. Just for Hugo, we’d packed two dozen, hard-boiled eggs. In cold weather that threatened rain, Hugo delighted in making egg salad on the side of a concrete retaining wall at a rest stop. Because he has always loved them so, egg salad and deviled eggs were the first dishes Hugo learned to make himself. That night in the national park hotel, Hugo had a persistent cough and the only medicine I had brought that would help was Benadryl. I gave him one tablet and he fell asleep by 8:30 while listening to Max read to Jules. So did I. The next two days, as we toured Mammoth Caves and hiked on trails in the park, Hugo was no longer a disgruntled teen. He was as impressed with the enormous cave chambers as any of us and equally as effusive in saying so. Often while hugging us.

Fully Functional

I write about my family. In part, because the quotidian amazes me. A little baby that I carried all over Boston became a boy who couldn’t read until the third grade when he was diagnosed with, and began the long process of remediation for, severe dyslexia. He now writes poetry and papers that floor me. Another boy, one who is brilliant at anything he attempts from academics to sports to music, has also challenged me since before his birth as a ten-pounder who got stuck with shoulder dystocia on the way out of the womb. That boy has grown up in the past year and now works hard at everything he does. He also makes me laugh every day. And my peace-maker child, the one I most feared would suffer long term consequences from the divorce is now, at nearly thirteen years old, becoming appropriately mouthy. I cannot express how relieved I am that he is. Then came Leif and Lyra, whom I think are the luckiest little kids I know, precisely because they have three adoring big brothers. We are like our own little village of five raising the two youngest children of the family.

I regularly turn to Max and say, “Everyone’s in a good place. Look at the boys, look at the babies, look at us.” Sure, dysfunctional families are fascinating to read about and I have enough of dysfunction in my personal story to write volumes of the dreck. But dysfunctional backgrounds are not generational sentences.

Life is long. Life is short. And, yes, life is good. Especially when you show up for everything—the fun, the challenges and all the messy stuff.

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Shattering Patterns

Won’t Go Back to Boston

At the beginning of the month, the annual conference of AWP, or the Association of Writers & Writing Programs, happened in Boston. Last year was the first year in many that I did not attend and it felt like a reprieve. Not a reprieve from the conference, where more than 10,000 writing professionals gather to attend (or present at) sessions from those related to writing (“Please Complete Me, Please Don’t Make Me Gag: Love Stories for a Cynical Age” was a panel this year) to publishing and finding work (Also: “Landing the Tenure-Track Job without a Book: What to Expect in the Job Market”). Neither did I want a reprieve from talking with other writers, including old friends whom I look forward to seeing each year at AWP, nor a break from listening to authors read their work. All those things I love and look forward to each spring.

No, what I did not miss was preparing my family to function without me for a few days. Making sure there was adequate adult supervision, that everyone had rides to where they needed to be, that there was food, clean clothing and instructions. In the business world, a good manager can leave her place of business temporarily and things should run as well as if she were there. Often, being the mother of a larger family feels like being the CEO of a small company. But those in my charge are not all yet fully trained adults. And as such, cannot, nor should they, always proceed without direct supervision.

Beyond the conference itself, I had a fantasy of going to Boston because it also fell on the same week Claude was home from college for spring break. I could have taken him on an odd nostalgia trip—odd given that the places we would have visited were ones where, when we lived there, I was deeply conflicted and generally unhappy. When Claude was three months old, his perpetually unemployed father took a job in Boston even though we lived in Columbus, Ohio. At the time, I was pursuing a graduate degree in art history at Ohio State University. I had a plum assistantship in the editorial offices of a scientific journal and a large community of friends and colleagues. I had no interest in moving to Boston and was very upfront in saying so to my then-husband.

Claude & Me, summer 1994

Claude & Me, summer 1994

For several months, Claude and I lived alone in Columbus. I took my baby to work with me and friends watched him when I had classes. I paid for all of our Ohio expenses with my stipend and spent my free evenings and weekends in the company of friends, many of whom had small children too. Simply put, Claude and I were thriving. Which is why I wish I could reach back, take my 28-year-old self by the shoulders and say, “Don’t go to Boston! Giving up your life simply to keep the family together is not only horrible for you, it sends the wrong message to your child!”

But we make the choices with what we understand at the time and I understood that my parents had split up when I was a baby. More than fearing what leaving my husband would mean for my child or me, I was afraid of being like my parents. As with most fear, it was irrational. I was ten years older than my parents were when they became parents. And I had a college degree, two in fact, when Claude was born and was well on the way to achieving my third. I had a home, a career path, a community and I was clear about what I wanted. That is, until I gave it all up.

We joined his father in Boston, when Claude was nine months old. While there, Claude and I were more alone than we had been in Ohio. I had no friends or colleagues (because I had no job) in Boston, a city where, unless you can recite your Revolutionary War ancestors, it seems you are forever an outsider. We rarely saw his father, who had rented a shotgun apartment in Somerville. On the right were the doors to three small rooms; on the left was the bathroom and a door for the smallest room in the house, hardly bigger than a closet. I kept that door closed and rarely went in there because it eerily reeked of cigarette smoke, like some ghost from a Stephen King novel lived in there, puffing away when we weren’t looking.

Just before we moved from Ohio, Claude’s father inherited some furniture. Beautiful antiques though they were, many of which were family heirlooms, we did not need a dining room table and chairs for eight, nor a hutch that was so large it was impossible to assemble in our apartment. In our bedroom, the mattress laid frameless on the floor, snug against our dressers while in the next room, chairs were stacked upon tables and surrounded by boxes of bone china and crystal. Rather than a home, the apartment looked like a used furniture store, each room an assemblage of related items crammed together.

Bored and with nobody to talk to, I spent my evenings plotting our daily escapes. With Claude either on my back in the backpack or on my hip in the sling, we rode the subway to museums, libraries and parks. Some days, I packed us up in our old Toyota Celica hatchback and drove out of the city, once going all the way to Vermont and a third of the way up that state. I loved the old world beauty of Boston, which feels more European than American in some ways. But I was like a long-term tourist with nothing to attach myself to—no graduate program, no job, no friends and, realistically, no husband. All I had was Claude, an easy baby whom I loved like nobody else, but a baby nonetheless.

Six months after arriving in Boston, I returned to Ohio. At first, it was just to visit friends but once there, I decided we would not return to Boston except to collect our things. I told Claude’s father he could return with us to Ohio if he wanted and, frankly, was surprised when he did. That was 1995. I’ve gone to New England, specifically Vermont, almost every year since then, but have never returned to Boston. So why is it I would feel nostalgic to show Claude, who is now nineteen, something he has no memory of? To give him the mental images of the places I’ve told him about? He’d go if I asked him to and maybe even enjoy himself, but I don’t know that he’d gain anything of it other than to humor his middle-aged mom. Which makes me feel a bit pathetic.

(No) Going Back

Instead, we went to Ohio State University in Columbus, Ohio. After nearly a year at the School of Art & Design at the University of Michigan, Claude is not feeling challenged by his art courses and has wondered if the issue is his program or whether he’s in the wrong major. Unlike Michigan, Ohio State has two separate departments for art and design and I have an old friend who teaches in their Department of Design. On our visit to OSU, Claude spoke with my friend and another professor, as well as the chair of the department. He also met with the secretary of the Art Department and a few students. Unlike last year, when we visited the colleges he was considering, this time Claude led the conversations and asked pointed questions. I felt comfortable leaving Claude on his own and several times walked away to take care of Lyra, who was with us.

Hayes Hall, Ohio State University

Hayes Hall, Ohio State University

The Department of Design is in the building that housed the History of Art Department, my department, when I was a graduate student. I waddled those same halls pregnant with Claude and later carried him around just as he was carrying his baby sister. At 6’2,” Claude now towers over me. He thinks nothing of swinging Lyra into his arms with an ease that comes with experience. “People think I’m a college daddy,” he told me when we were walking across the oval. I talked to him like a solipsistic tour guide: That’s the Wexner Center, which was built shortly after I started going to school here and where I saw nearly all of Hitchcock’s films. Here’s the short cut to the Art Department from Hayes Hall, my boyfriend before your father was in this department and we went back and forth between these two buildings. Wow, the union looks great, it was all loopy ‘70s interiors when I was here. See that building? That’s Denney Hall where I worked for a year between undergrad and grad school. Claude politely listened though I’m sure he’d fail a quiz on anything I shared with him about my days at OSU.

“So what’d you think?” I asked him on the drive back to Akron.

“I want to stay at Michigan,” he said with a certainty that surprised me. “The programs are similar, the set up is kinda the same. But when I listened to the dean talk about all the work for a design degree and the projects and, well, you know what?” he asked looking at me from the passenger’s seat, “I realized I just don’t have the same passion for design that I do my academic classes.”

“Really?” I asked, trying to sound impartial. Inside my heart leapt, feeling I’d scored an A in parenting. Last year, a handful of art schools—SCAD, SAIC, CIA—pursued Claude. But I after watching how deeply engaged he was in his high school English and history classes, the only restriction I put on his application process was that he go to a full university for his undergraduate work. Still, there were times last spring when I wondered if my one edict was keeping Claude from opportunities he would not have again. No matter how hard I try to be the best parent I can, it sometimes feels like a crapshoot.

A Family Tradition: Reading the Beats at Nineteen

When Claude left for college last fall, I had in my mind a vignette where he would come home at Thanksgiving and share effusively the things he was learning in his classes. He would read his papers to us and tell us about the ideas of his professors and classmates. I had seen elements of this in his high school coursework, especially English, where Claude would get so excited by what he was learning, he would have to stand up and move around the kitchen while he talked.

Instead, he came home last fall frustrated and not a little deflated with his classes, which were all art courses. “Why can’t they just teach us the fundamentals before asking us to do something conceptual and creative? Why are we paying $50,000 a year for this crap? I’m not getting anything out of it!” (For the record, most of the bill is covered by grants and scholarships; Claude and I only pay a small fraction of that total.) He was sure of nothing—the school he was at, the program he was in or even being a student. “I should have taken a year off!” he told me repeatedly. He struggled with what felt like monumental decisions to him, but I saw him asking himself the right questions at the right time. Max and I told him to enroll in as many academic courses as he could spring semester. And that’s what he did. Along with English, this semester Claude is in a world political science course and a performance course with playwright Holly Hughes. And just one art class.

When he was home for winter break, I asked Claude the topic of the English course he had enrolled in. “I don’t know,” he said, “A couple of my friends really like the instructor so I just signed up for whatever he was teaching.” While a highly recommended instructor as the sole reason for registering for a course isn’t exactly typical, it’s not the worst way to pick classes. In late December, books by William S. Burroughs, Jack Kerouac and Allan Ginsberg began arriving from Amazon.com.

“Are you taking a course on the Beats?” I asked him.

“I don’t know. Those are just the books we’re supposed to order for the class.”

My father introduced me to the Beats when I, too, was nineteen. He handed me two books, Kerouac’s On the Road and Minor Characters by Joyce Johnson.

“If you want to understand me,” my father said as he handed me On the Road, “read this and then read it again every ten years.” As an after thought, or so it seemed, he added, “This other book is by a girlfriend of Kerouac’s. You can read that too, it’s interesting. But only after you read On the Road.”

I don’t recall telling my father that I wanted to understand him or not understand him. At nineteen, I hadn’t given his life much thought. Looking back, it seems clear he was asking to be understood. I did read On the Road shortly after he gave it to me and when I was finished I remember thinking, well, that was different. I didn’t read it ten years later or ever again, but the poetry of certain passages has stayed with me …they were all children, and in the sunny cherry blossom morning of springtime in the Rockies rolling their hoops up the joyous alleys full of promise…

I also read Minor Characters, which I believe was the first memoir I had ever read and a good one, too. The famous Beats flow in and out of Johnson’s story, but it is her personal bildungsroman, which is set against and poignantly captures the 1950s’ counter culture in New York City, and the stories of her non-famous friends that make this a book I continue to recommend.

But did either help me understand my father? No. Perhaps if I’d gone ahead and read On the Road when I was 29 and 39 I would have found the significance it has for him. The truth is, I just wasn’t interested. I once told someone I went easy on my father because he never yelled at me or hit me, which I realize is a pretty low bar to set for a parent. When I was a teenager and getting reacquainted with my father after a ten-year absence, I found his intelligence often revealed itself through his humor even if, at times, it was colorfully inappropriate. However, after he left my stepmother and moved out west, my sister and I found our phone conversations with him tediously one-sided—long litanies in minute (and sometimes vulgar) detail of events that had happened with people we didn’t know. He was only forty-five when left Michigan, but after a couple of years in Arizona, he ruminated like an old man.

In truth, my father was no better a parent than my mother because, while not aggressive, he is emotionally weak. And his weakness led him to make poor choices, or sometimes do nothing, which was also a poor choice. In the late sixties, as a single father, he was a twenty-something hippy living on Chicago’s north side and thought nothing of blowing pot smoke into a paper bag and having me inhale it. When I was four, my mother had returned and gained custody of me. A few years later my father was a vegetarian biker (as in motorcycle) living in rural Northern Michigan and did nothing when my stepfather sought to adopt me, thereby severing any legal ties my father had to me. And when I was sixteen and living with my father for the first time in decade, he was an old-hippy-biker-stoner-stay-at-home-dad who blithely allowed the predatory attentions some of his friends gave me. I stayed less than a year.

On My Road

As a religious studies major, I had studied Buddhism. But it wasn’t until the summer of 1996 that my ex-husband and I began practicing Shambhala Buddhism. Like all major religions, Buddhism has a variety of “denominations,” and we could have become Zen Buddhists or Theraveda Buddhists. But a fellow religious studies student introduced us to Karmê Chöling Shambhala Meditation Center in Vermont. Almost every summer since that first visit, when Claude was two and I was pregnant with Hugo, the boys and I have gone to the nine-day family camp at Karmê Chöling. Each morning of camp, while the parents meditate in a Tibetan style shrine room, the children are enrolled in classes where a little religious instruction is combined with a lot of outdoor play on the mountainside grounds of Karmê Chöling.

Choygam Trungpa Rinpoche, a Tibetan spiritual leader who was exiled with the Dalai Lama in 1959, introduced Shambhala Buddhism to the United States. Like most, if not all, spiritual innovators—including, but not limited to, the Buddha, Jesus Christ, Martin Luther, Joseph Smith, Suzuki Roshi—the Rinpoche’s story is complicated, if not downright messy. The first few summers we went to family camp a few of middle-aged dads, often in their second marriages, came with their families. Many afternoons, while we sat on lake beaches watching our children frolic in the water and sand, these former students of the Rinpoche enjoyed telling me stories about their teacher. They were all very clear about the Rinpoche’s foibles, which are widely known and well documented. But they were equally clear that the Rinpoche was a spiritual master. If for no other reason, Choygam Trungpa Rinpoche’s life is impressive for this one: in a few short years, he established institutions and translated texts that effectively established Buddhism in the religious pantheon of North America.

My dad and me, December 2004

My dad and me, December 2004

It was at least five years after we began practicing Shambhala Buddhism that I recognized the connection it had with the Beats. Even though I’d given my dad a copy of The Dharma Bums by Kerouac a few years after he had given me On the Road. Even though I knew that Choygam Trungpa Rinpoche had founded the Naropa Institute in Boulder, Colorado where, for a time, Allen Ginsberg and William S. Burroughs had taught. It was like I had a mental blind spot that prevented me from connecting the two. It wasn’t until I heard a radio interview with a man who had been at the Naropa Institute with Ginsberg and he said something like, “the Rinpoche told Ginsberg he was too attached to his beard and needed to shave it off,” that I saw the obvious: I’m practicing the same religion as my dad’s Beats. Maybe it’s a silly coincidence, but it doesn’t feel like it.

Claude Explains the Significance

While home for spring break, Claude worked on a paper about Kerouac’s On the Road. He told me there were two dominant male stereotypes in the 1950s. The first was the abusive and sexually vital king who refuses to settle down and be domesticated by women, characterized by Dean Moriarty. The other is the gruff, but indulgent “good provider” who succumbs to the feminization of his life, marries, moves to the suburbs and probably has a few kids. “So, you know how Sal, who’s basically Kerouac, chooses to go off with his wife in the Cadillac at the end of the book? He’s choosing tradition! Everyone thinks that book is so radical, but it wasn’t!”

Thinking of these two stereotypes, either of which limits a man’s full humanity, the Rinpoche was not unlike the sexually vital king. He died of alcoholism at age 48. Kerouac seemingly succumbed to the good provider role and was living with his mother when he too died of alcoholism at age 47. Fortunately, my father, who is now 67, has not died of alcoholism. When I review his life, I see he tried to be both stereotypes and, perhaps for the best, was good at neither.

I write obliquely about Claude’s father, because he is only a small part of the background of our story. But that is not the case for Claude. Last spring, after being disappointed and frustrated with his father for years, Claude confronted him in our driveway and told him that he, the son, felt like the adult in their relationship. They went back and forth speaking loudly, but not shouting, for a several minutes. Standing nearby and watching closely was Jules, who was supposed to have dinner with their father. Finally, their father exasperatedly asked Claude what it was he wanted from him. “To just show up. I just want you to show up,” he told his father.

What would have happened if his father had realized that by confronting him, Claude was showing his father that he wanted to have a relationship with him? And what if his father had heard the very clear and simple instructions on what Claude needed in order to have that relationship, Just show up! We won’t ever know. Claude told me last fall that he never thinks about his father, that the only time his father enters his mind is on the rare occasions when he sees him. It’s hard not to feel like I fell into a familiar groove when I had children with the boys’ father, a man whose exterior is so very different from my own father’s but who has the same emotional fortitude.

I can’t change their father; heaven knows I tried. I try to raise emotionally connected sons, very consciously so. And in my relationship with Max, I hope they see an example of manhood that explodes the two stereotypes of Vital Sex King or Gruff Provider. It’s not a crapshoot, even if it sometimes feels that way.

Back to School

“You didn’t want him to leave,” said a friend when I told her that I had waited too long to buy Claude’s Megabus ticket back to Ann Arbor. It was the day before he was to return and there were no seats left on the bus. Luckily, the trip from Akron to Ann Arbor is just under three hours.

“We’ll both go,” said Max and even though there were plenty of reasons why one of us should have stayed home (taxes, laundry, several indoor projects that need completed before the weather changes and we are back to yard work), I am glad he insisted. We brought Lyra, but left Leif home with Hugo and Jules. On the way to Ann Arbor, Max and I talked with Claude about his plans. After a year of existential angst trying to decide where his place is and what he wants to do with his life, Claude seems confident about, well, everything.

He’s going to get a liberal arts degree, maybe in English, and if so, I would consider taking Claude to AWP next year (in Seattle) because he’d enjoy any number of panels and certainly hearing world renown authors speak and read. Then again he might major in history or political science. Whatever he majors in, he’ll now take the art courses he wants to take but was not allowed to as a major in the program. Courses on the fundamentals of drawing, painting and sculpting. “You are at one of the best institutions of higher learning in the world,” I told him on the way back to his dorm, “you may never have the chance again to explore the things that are available here. Take whatever courses you want. Go for five years if you have to.”

For Claude, this first child of mine who is now making very adult decisions, my role has changed. No longer do I give him direct supervision, but rather wait for him to come to me when he needs feedback. Important decisions are his to make.  After all the years I spent trying to raise him to be all he could or ever want to be, I now get to watch it all come together. I wouldn’t miss it for the world. Neither would Max. Why would anyone?

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Lyra’s Eyes: The Latest

Seeing Red

“We gotta go,” I mouthed to Hugo, who nodded at me while pounding out rhythm and blues on the school piano, playing back up for a couple of guitarists. It was an odd Valentine’s Day. Jules was in Florida and Max was having dinner with his 90-year-old godfather, whose younger brother had died earlier that week. That left just Hugo and me, along with the babies. Rather than cook, we went to the Waldorf school for a potluck and open mic. Leif, who had uncharacteristically clung to me since we’d arrived an hour earlier, softly chanted I want to go home for several minutes before I reluctantly pulled Hugo off the piano.

Once home, I changed Leif into his pajamas. His torso was warm, too warm. I tilted him back in my arms and felt his forehead. Hot. “You don’t feel good, do you?” I asked him and the eyes looking back at me were glassy.

The next day, Lyra, who turned six month’s old on Valentine’s Day, had her latest check up with Dr. M, her pediatrician. Just shy of twelve pounds, Lyra remains in the less than 4th percentile for typical children, but around the 40th percentile for children with Down syndrome. The biggest “problem” with her size is clothing. Those sized 0-3 months clothes are generally for children weighing 8-12 pounds. Some of her clothes this size, especially those with footies, are getting small, but clothes sized 3-6 months are voluminously large on her. The few things that fit well get washed often.

At Lyra’s appointment, I negotiated the supplementing of iron with Dr. M, which she strongly advocates because anemia can lower a child’s IQ (it has to do with oxygenation of the brain). Unfortunately, iron can also cause constipation, which happened with Lyra as soon as we gave it to her. In order to avoid a potential problem, I feel we have created a real one. Constipation is a commonly associated with Down syndrome and something Lyra did not have until we introduced iron to her system. I have taken her off of the vitamins and pointed out to Dr. M that the cereal we give her (Happy Bellies brand) also contains iron.

“Why don’t you try adding some extra fiber to her cereal to get her going again,” said Dr. M and she wrote down a brand name on the “Babies at Six Months” handout. She then said, “Before you go, do you want me to look in Leif’s ears and throat?” Leif was still hot. Some people are sweet when they don’t feel well (Claude and Jules) whereas others are crabby (Hugo, Leif and, to be frank, me). During our appointment, Leif had thrown himself on the ground several times, tried to run out of the room when the nurse came in, pushed the stool to the wall so he could reach the light switch. Thank heavens Dr. M blocks out extra time for visits with children with DS.

“His ears look fine, his nose is clear and I don’t see anything in his throat,” she told me after I wrestled him down for her. Other than a fever and an attitude, Leif was fine. That was Friday.

Two days later, we were at Akron Children’s Hospital’s Emergency Room. By Sunday evening, Leif’s head had become a ramped up mucus factory that poured its products not only from his nose, but also from both his bloodshot eyes. His eyes were slits in his puffy face and he looked like he’d been stung by a swarm of bees. When we put him to bed, he had slept briefly before waking up, screaming in pain. But most concerning, and why we ultimately made the call to go to the ER, was he had refused to eat or drink for much of the day and his lips were cracked and bloodied from dehydration.

Leif was diagnosed with rapid onset, bilateral, acute conjunctivitis and bilateral, acute otitis media or in lay terms: a bad case of pink eye in both eyes and equally bad ear infections in both ears. They put him on Augmentin and because he’s never been on antibiotics before (and Augmentin is really strong), Leif’s eyes cleared up within 24 hours.

What’s This Got to Do with Lyra?

I wear contacts, I’ve had pink eye. You can’t wear contacts when you have pink eye. For me, that’s no biggie, I just wear glasses for a while. But if Lyra gets pink eye and cannot wear her contacts, she effectively cannot see. Recently, my own eye doctor, who also fits contacts on children who have had lensectomies, showed me what Lyra can see without her lenses. In an open container the size of a shirt box, the doctor keeps glass lenses lined upright in several rows, like poker chips. He handed me one of these diagnostic monocles by the tab in its wire frame and told me look through it with one eye closed. It was like looking through glass block. I could see light and color about as well as before, but shape and distance were impossible to comprehend. Were that my vision, I wouldn’t be able to walk safely down an open hallway.

When Lyra is older, she could wear glasses if she needed to. For her condition, however, it would require lenses that are extremely thick and made of glass, not the lightweight polycarbonate most eyeglass lenses are made of today. Right now, she’s too little for the glasses she’d need and taking a break from her contacts would potentially affect her brain’s vision development. In order to literally grow the part of the brain that processes vision, the brain needs the eyes to see, and see well. As I described in the post “I See You and You See Me,” this is why Lyra had her lensectomies at such a young age (six and seven weeks old).

Lyra’s Eyes

Lyra’s surgeries were dramatic, so it’s no wonder people often ask for updates on her eyes. The good news is that there is not much to report. Her eyes healed from surgery without any complications. She wears extended wear contacts that are aphakic. Aphakia simply means an eye without a (natural) lens. Eyes have lenses that, when working perfectly in pairs, provide 20/20 vision. Thus, aphakic contact lenses (or glasses) are not corrective lenses, but rather replace the surgically removed lenses. Many people, particularly as they get older, don’t have perfect lenses and need either glasses or contact lenses to correct their vision. Less common, and not universally recommended, is refractive surgery in which a corrective lens is surgically implanted over the natural lens to correct nearsightedness.

Lyra’s aphakic contacts do not look like my contacts. It is easy to see them in her eyes—the edges often look like a piece of Saran Wrap that isn’t fully adhering to her eyeball. Also, her pupils are clearly magnified, which makes them look huge, like manga pupils. I asked Lyra’s surgeon about the way her contacts look a week after her second surgery. Something I love about her surgeon is that he clearly gets geeked up when I ask him to explain how what he does works.

“So you wear contacts, right?” he asked and I nodded. “Well, your prescription is probably somewhere between three and six.”

“It’s about a four,” I said.

“Lyra’s is a 20. And that’s why they are shaped this way,” he said as he showed me the lens he was about to place in Lyra’s left eye. On the tip of the surgeon’s forefinger the contact rested as it would in her eye. He held it up so I could see it in profile. My contact lenses when viewed from the side look like the arc of the sun just before it sets on the horizon. Lyra’s look like a UFO because the center of the lens pops up, like the control room where the aliens sit when they fly their saucer ships. That’s where all the magnification is and why her pupils look so big.

Kitty-Eyed

The pupil on Lyra’s right eye is not round but elongated at the top, looking a little like a cat’s eye. A small portion of her iris, just above her pupil, was unintentionally removed in her lensectomy. When I pointed it out to the doctor, he said it happens and her blue eyes made it more noticeable. He didn’t seem concerned, but I was and wanted to know if it would affect her vision.

“No, not at all,” he said. “She’ll just have this one unusual looking eye. You know, the other night I was watching the news on TV and I saw a reporter who had the same thing. Years ago, that reporter would have tried to hide her elongated pupil with a cosmetic contact, but we’ve come a long way. Your daughter will be fine both physically and socially.”

What Sucks

Early on, the surgeon told us he’d keep Lyra in contacts as long as she’d tolerate them, forever even. I thought by “tolerate” he meant something medical, but he didn’t. It became clear to me what he did mean when I spoke with another mom in the waiting room just before Lyra’s contacts were cleaned for the first time. This woman’s daughter, who does not have Ds, was born with a cataract in one eye.

“After my daughter’s surgery,” she told me, “she wore a contact, but I couldn’t get the thing in or out, you know? And it popped out all the time! I mean she would just scream and I couldn’t hold her still, so they gave her the glasses, but she kept pulling them off. Finally they agreed to do the surgery. But now I don’t think she’s seeing in that eye and that’s why we came in.” A pretty child of about three, she wanted to see my baby. Seated with Lyra in my lap, I looked into the girl’s big, brown eyes when she came over to us. Her left eye looked blind.

“That’s because her mother has a hard time getting her to wear a patch on her good eye,” said the surgeon. In the exam room, I told him how upset, no, completely freaked out I was at the idea that after the surgeries our Lyra could still be blind. “Things are ironically easier for your daughter because she had bi-lateral cataracts. She doesn’t have a dominant eye.” As for the difficulty that mom had changing her daughter’s contact lenses, the surgeon told me that because of Lyra’s Ds her eyelids were very different, making it harder to insert and remove the contact lenses. Therefore, he told me, they will be conducting the cleanings in his office for the foreseeable future.

Okay, that was a relief to hear. But then we went through what was to become a nightmarish monthly ritual:

1)    A nurse’s aide comes into the exam room and has me lie Lyra down on my lap with her bottom against my tummy and her head near my knees. After thoroughly washing her hands, she tries to hold Lyra’s eye open with one hand so that she can place a small suction cup (designed to adhere to contact lenses) on Lyra’s contact. As soon as the aide tries this, Lyra clamps her eyes shut and screams like she’s been cut with a scalpel.

A baby's eyes opened with optical specula. This is not Lyra, but it is how she looks when they are used to remove and insert her lenses.

A baby’s eyes opened with optical specula. This is not Lyra, but it is how she looks as she lies in my lap while I hold her down. It’s no wonder she fights.

2)    The aide leaves the room and comes back with a nurse. The nurse pulls an optical speculum out of a drawer and, after two or three attempts, manages to get it properly in Lyra’s eye. This is never a pretty site. With her eyelids forced open, the aide again tries to suction out the contact. It still doesn’t work, so she instead tries to use a long cotton swab to push the lens off of the center of Lyra’s eye. Once, this made the eye bleed. All the while, Lyra is screaming and sweating as I continue to hold her arms to her sides and the nurse firmly holds her head.

3)    After several attempts, the aide again leaves and brings back the surgical fellow, a woman from India, who attended both of Lyra’s surgeries. Using a different speculum, the surgical fellow quickly removes both contacts. As soon as the second lens is out, I pull Lyra up and hold her on my chest to calm her down.

4)    Putting the cleaned contacts back in is almost as difficult as getting them out and only achieved, again, by the surgical fellow.

“I won’t do it next time,” I told Max after the second time I had to be the thug who held Lyra down while they tortured her in the exact same fashion two months in a row. “Her appointment to clean her contacts next month is at 8 a.m. You can take her before you go to work.” When he took her at the end of January, I told Max before he left, “Insist they bring the surgical fellow in first, not last.”

“It wasn’t that bad,” said Max when he called me after the appointment. “The surgical fellow was in surgery, so they sent in the nurse’s aide and she got the first lens out on the second try.” Unbelievable. I certainly want this to be as easy and painless as possible for Lyra, but it seemed unfair that it had been such an ordeal when I had taken her. Perhaps the team had gotten their technique down. Perhaps Lyra has become better accustomed to having her eyes messed with. But I’m afraid she did worse with me because she felt my emotional distress at holding her down against her very strong will.

“Also,” said Max after returning from Lyra’s breezy appointment, “the doctor upped the strength of her lenses and we both agreed that her left eye was crossing in and so we have to start patching her right eye for one hour every day. Oh, and she doesn’t have to get her contacts changed for two months now.”

Lyra looking unusually happy during morning eye patch hour.

Lyra looking unusually happy during a morning eye patch hour.

I don’t know if it is the increased strength of her new lenses or the fact that we are now several months past her surgeries and her brain has had time to catch up to the visual input, but the way Lyra sees has changed recently. Maybe it’s the new lenses working together with the more developed brain. Whatever the underlying causes, it is as though Lyra has awakened. She quickly turns towards the direction of sudden sounds. She recognizes people and rewards them with full-faced smiles.

We find we do best  when we treat patching Lyra’s eye the same way we do exercise: Do it first thing in the morning or it probably won’t happen. And because of the little girl I met in the waiting room at the surgeon’s office, you can be sure we do. Lyra fusses most of the time while the patch is on and after about half an hour, she often shuts her left eye. She isn’t sleeping, but seems to be telling us, “If you don’t take this damn patch off of my good eye, I’m outta here.”

Keeping Her Eyes Clear

Pink eye is extremely contagious. And even though antibiotics might have rendered him non-contagious, the fact that Leif cannot keep his hands off of Lyra makes me anxious. Five days after Leif began taking Augmentin, I took Lyra to her surgeon’s office to make sure she didn’t have conjunctivitis. I had lost all objectivity and her eyes looked symptomatic to me. We saw a different surgeon in the practice and he told me Lyra’s eyes were clear, but gave me his cell phone number with instructions to call if anything changed.

That same afternoon, my eye doctor told me I had a mild case of bacterial conjunctivitis. Mild enough that he would not have prescribed antibiotics except that I live with Lyra. The next morning, the same doctor told Max that he had a pretty bad case of it. That’s three out of six of us currently living in the house. My hands snag our clothes when I fold laundry because they are so dry from how much I wash them these days.

I love winter. I love the snow and the deep freshness of cold air. I love being cozy in a warm house with a fire in the fireplace or pies baking in the oven. But I want this winter to end. I cannot remember a cold and flu season that has come close to affecting us as much as this one has, where all of us have been sick more than once. Leif is still not 100% himself and it’s been two weeks since he first came down with a fever.

The next day the mercury is over 50 degrees Fahrenheit, you can be sure the windows of our house will be wide open. Meanwhile, we wash everything we can and often. Linens, hands, surfaces, faces. Knock on wood, so far it’s working and Lyra remains clear eyed.

 

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This Is Whoopsie Piggle

“You know it feels like I’ve been in Florida for only three days, not a week. But when I think back to when Grandma met me at the airport, that seems like a long time ago,” Jules said to me on the phone.

Jules with Grandma Ann & Grandpa Clark

Jules with Grandma Ann & Grandpa Clark

“Well, you’ve packed in a ton into one week,” I told him and, thanks to the grandparents, he really had. On the Whoopsie Piggle Facebook page, the family photo shows Jules looking at the camera through binoculars. His Grandma Ann gave him those binoculars at Christmas because, like her, Jules is an avid birder. In our yard, Jules maintains multiple feeders, each designed to attract different species of birds. Last fall, Jules helped to pay for the purchase of a serviceberry bush after angling for one all summer. Do you know how many birds are attracted to the serviceberry bush? Was the rhetorical opener we heard repeatedly and just prior to a litany of species. Jules has worked his way through innumerable bird guidebooks, which he reads like gripping novels. He prefers the drawings of Roger Tory Peterson to those of James Audubon and can tell you the migratory, mating and dietary cycles of more species of birds than you might have known existed. And he does. Tell us, that is. Endlessly.

Ah, the great goodness of good grandparents.

At The Villages, where Max’s mother and her husband, Clark, winter each year, a population of “active seniors” eagerly awaited the arrival of this young birder. The residents delighted in showing Jules birds he had never before seen and were impressed by his knowledge, both wide and deep, of the avian class, among other things (last summer, Jules’ other grandfather nicknamed him “Encyclopedia”). After six days in Florida, Jules told me he had seen 83 species of birds, 80% for the first time. He saw them around The Villages, on a day trip to the Gulf Coast and also on a two-day trip to the Atlantic Coast and Merritt Island.

Grandma & Grandpa Christensen with George, ca. 1978. It seems to be the only photo I took of them.

Grandma & Grandpa Christensen with George, ca. 1978. It seems to be the only photo I took of them.

Thinking about it after I hung up the phone, it reminded me of my time with my grandparents who retired to Arizona in 1973. Like Jules, I had been a child from Ohio flown to a state that was exotically different. My grandparents also packed up and traveled the state with me, though they brought along a fifteen-foot Aristocrat trailer. Over the period of three summers, we traveled through Cochise County in the southeastern corner of the state all the way north to the Grand Canyon and Lake Powell. Like Jules, when visiting my grandparents, the dramatic landscape and its creatures transfixed me. I took many photos of mountains and lizards and saguaro cacti, but woefully few photos of my grandparents. I have none of the three of us together. The next time Jules called, I told him to get photos with his grandparents, even if he had to ask a waiter.

For Jules, a week alone with his grandparents is a week in which he does not have to be one of five children. He is the sole focus of two adults and their community who, by all accounts, are having as much fun with him as he is being there. At home, Jules is a mini-me. After nearly a decade of being the youngest child in the family, he transitioned easily into role of big brother. When I tell people that Jules makes my life easier, it is no exaggeration. All three of the older boys are wonderful with three-year-old Leif and baby Lyra, I could not imagine they’d be any more loving and helpful were they three older daughters. Jules, however, is uniquely able to play like a child with Leif because Jules still is a child. Yet, at twelve, he has a foot in adolescence. Which shows when he helps with Leif and Lyra; regularly doing things like getting them food and drink, changing their diapers, bathing and dressing them, putting them to bed and plucking them from their cribs when they wake up. He does so without prodding, often taking Lyra from my arms whether I need him to or not.

In my girlhood visits to Arizona, I too soaked up the attention of my grandparents and their friends. However, for practical purposes, I was an only child. I did not see my father between the ages of five and fifteen and my only siblings are the two daughters he had in his second marriage. One of the most positive components of my mother’s parenting was her neglect, which, thankfully, was also her default setting. Her attentions were rarely positive and commonly violent, so neglect was preferable. For many years, she left for work as a bar maid within an hour after I came home from school. My stepfather, who sold farm machinery in multi-state territories, was rarely home on weekdays. Most afternoons, I ate my dinner and did my homework in front of the kitchen TV, washed the dishes, watched more TV, took a bath and read in bed until I fell asleep.

In Arizona, my grandparents planned their days around me. Oh, sure, we still went to their events, such as botanical society meetings or church outings, but even when there wasn’t much for me to do but sit and wait, I didn’t mind because I felt included, just as Jules did in Florida. This hit home when Jules told me Grandma and Grandpa taught me a new card game, I don’t know what it’s called, but we’ve been playing at night. I remember sitting at a card table my grandparents’ living room playing a game that required four decks of cards. Their wirehaired terrier, George, would hang out under the table, ready for someone’s hand to drop and scratch his ears. Night after night, once the dinner dishes were washed, my grandparents had no other desire than to spend time playing cards with me. These little things, in no small measure, buffered me through the years with my mother.

Who Are These People?

My grandparents in Arizona were my father’s parents. Even though my mother aggressively forbade any communication with my father for over a decade, her parenting default setting made summers with his parents possible. For the price of a plane ticket, she was childfree for three months. And I had three months to sample childhood.

My boys don’t have a relationship with any of their biological grandparents. With my mother, it’s a generational mirror. My adult relationship with her has consisted of long gaps of estrangement punctuated by brief periods of reconciliation in which I would cautiously hope she had changed only to find out all to clearly that she had not. I came to the conclusion a few years ago that there is absolutely no healthy reason for me to ever communicate with my mother again. My boys, who have their own stories to tell from their few interactions with her, have no desire to see her either. This week on Slate, I read an article validating our choices

The boys never hear from their father’s father, a widower who lives in Mexico.

None of the grandparents in our family are blood relatives except for Max’s mom. And she is not related to the three older boys. At Thanksgiving, I posted about spending yet another warm holiday with the boys’ grandparents, i.e., my stepmother and her husband, who is not my father. After divorcing my father, Liane married Bob a couple of months after Claude was born. Together, they have been the primary grandparents of my boys’ lives and now are significant to Leif and Lyra, too.

I wasn’t thinking of what kind of father Max would be when I fell in love with him. But knowing him as I did, for we had been friends for years before we became a couple, I would not have been surprised to learn that he would be devoted to his children. That he is equally as devoted to my three sons defies typical expectation. In terms of Darwinian fitness, i.e., survival of one’s own packet of genetics as the species continues, a child from another man is competition for the resources of his own children. But Max is not a base animal. He’s not even a base human. He loves and tends to Claude, Hugo and Jules just as he does Leif and Lyra.

As the old Ronco ads used to say, But wait! There’s more! Max also brought my boys a set of grandparents who are so good at it, I suspect they’ve been preparing for it all life long. And not just for the fun stuff. Last summer, when Claude had to go to orientation at the University of Michigan, he took a bus from Charlevoix, Michigan, where he was living with Grandma Liane and Grandpa Bob while working for the city streets department, to Battle Creek, where Ann and Clark live nine months of the year. Max’s mom was out of town, visiting relatives in Colorado. So it was my partner’s mother’s husband, known around here as Grandpa Clark, who spent the evening with Claude and then drove him first thing the next morning to Ann Arbor.

This Is Whoopsie Piggle

We’ve piggled ourselves up a family and it is good. Sure, there are times when I wish Max and I had met and fallen in love in our late 20s, that we had been together through our 30s and not had to wait until our 40s to create this family. But the longer we are together and the more normalized this family becomes, the less I pine for the decade when we weren’t raising these kids together. The way the boys love Max is as open as the way he loves them. Claude calls Max to discuss assignments he’s working on and when he comes home, the two of them go out for dinner together at least once.

“Hey, I hear you’re my mom’s boyfriend,” said 11-year-old Hugo in September of 2008, “Can I have twenty bucks?” Max told him no, but was not offended, and we still laugh about it today. Soon thereafter, Hugo turned to Max for help with his homework, advice on how to handle social issues at school and just to talk. Before Max, I was unaware of the void in the boys’ lives, one I had not been able to fill. Yes, I could show them how to be adults, but they also wanted to be parented by a man.

A few months after we had informed the boys that we were dating, Max joined us at a school event. When we left, Jules decided to ride with Max. As Claude and I watched from my car, Jules first got in the back seat of Max’s car. Then he popped back out. With his arms and legs moving in all directions, Jules looked like a gangly scarecrow as he scrambled into the front seat. “Jules likes Max,” said Claude. “We all do. He’s…well, he’s just so humble.”

There are some who believe that before they are born, children choose their parents. I have a hard time reconciling that idea with the parents I have. I do not believe biology trumps love. Being related is not reason enough to have a relationship with someone who is cruel or neglectful. Whoopsie Piggle is about a group people who actively love each other—all the time, not just when it’s convenient. Or in the booty-shaking words of Sister Sledge, “We are family.”

Claude, Leif, Max, Lyra, Holly, Jules and Hugo. All piggled up for a photo.

Claude, Leif, Max, Lyra, Holly, Jules and Hugo. All piggled up for a photo.

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Love Stories, Sexuality and Secrets

“You know what movie we should get for Valentine’s this year?” Hugo recently asked. Many years ago, I began a tradition of buying a movie musical on DVD for the boys, many of them from Hollywood’s Golden Age, each year for Valentine’s Day. While I try to keep a low media household, I have always been a fan of family movie night. I suspect my original reason for buying musicals was to expose the boys to something family friendly other than Disney and, perhaps more importantly, enjoyable to me. I used the excuse that most musicals are love stories and, therefore, apropos for Valentine’s.

IMG_1363The first Valentine’s musical I gave them was Seven Brides for Seven Brothers, which to this is day one of our all time favorite movies. There are love scenes and fight scenes and plenty of lush singing by Howard Keel and the cast. Back then, films were cast with Hollywood unknowns, pulled from the theaters of New York, and the professional dancers in Seven Brides for Seven Brothers are delightfully athletic and graceful. (I wish Hollywood musicals today would do the same, particularly with professional singers, something I believe would have greatly improved last year’s Les Miserables).

Romantic Comedy Not Just for Chicks

This past weekend, Parade Magazine published a piece by syndicated columnist Connie Schultz on what women want for Valentine’s. Schultz describes a friend who wants to watch a chick flick with her husband so long as she can duct tape shut his mouth to prevent his running (and presumably condescending) commentary. TIMG_1365hat just won’t be a problem my boys’ partners will ever have. For example, when Claude was eleven and Hugo eight, they insisted upon watching, in one sitting, both disks of the Colin Firth and Jennifer Ehle version of Pride and Prejudice. Originally broadcast as a TV mini-series, the movie is over five hours long. And they didn’t just watch it with me—they devoured it. That same year, all three of my older boys watched the French film, Amelie, so many times I found them viewing it without the subtitles (if you take nothing else from this post, watch Amelie and you too will fall in love). I wonder if I can take credit for cultivating their love of romantic comedies or if they were born predisposed to love them?

On a winter’s day when school had been cancelled because of snow, I piled onto the couch with then fourteen-year-old Claude, eleven-year-old Hugo and seven-year-old Jules to watch When Harry Met Sally for the first time. The younger two would hop off of the couch and cover their ears and eyes when the scenes became mushy. We now watch that film every 6-12 months. Having seen it so often, I focus on the late Nora Ephron’s writing, which made art out of the Unknowninner lives of women. (Sure Woody Allen does the same for men, but he’s a guy and the both the outer and inner lives of men have long been considered art while the lives of women have been typically viewed as, well, mundane.) Also, I now find Meg Ryan’s acting amateurish compared to Billy Crystal’s. I cringe at the scene in which she is sobbing because her ex-boyfriend is getting married. I just don’t feel her pain or believe her tears. Yet that scrappy Billy Crystal, with a chest like a 12-year-old boy, is convincing, time and again, as the leading man. Every time we watch it, we root for that guy to get the girl.

Are They Gay?           

First of all, I have succeeded (as opposed to erred) on the side of being wide open. The boys might tell you too wide open. I’m like the dad Liam Neeson plays in another DVD we own, Love Actually. When his young son tells him he’s in love, Neeson’s character responds, “Well, who is the lucky girl…or boy?”

“I swear you want me to be gay!” Hugo regularly jokes with me when I’ve made another either/or comment.

“No, my dear, I don’t want you to be gay any more than I want you to be straight. I just want you to be happy in your own skin,” I tell him.

What I think is going on is that, in certain circles, it is easier today for men to enjoy any number of things that in the past would have been considered exclusively female. Typically, it is easier for a subordinate population to adopt characteristics of a dominant population but not the other way around. For example, in western culture women wearing pants (i.e., the clothes of men) became normalized in the mid-twentieth century, but men wearing dresses did not. Today, and again in certain circles, men can openly express interest in everything from fashion and art to personal care (read: fancy treatment of hair and skin) without worrying what others will think. I believe this is  because fewer people today, especially younger people, consider sexual orientation as something to judge any more than the color of one’s eyes or hair. We all benefit from this long overdue advance in attitudes and civil rights.

Years ago, when Claude was perhaps in kindergarten, I read The Courage to Raise Good Men by Olga Silverstein. She describes how boys in our culture have long been expected to deny their softer emotions only to wind up as adults who struggle in relationships precisely because they are emotionally disconnected. Rather than worrying about feminizing my sons, I have shared with them things I enjoy and also followed them when their passions developed in areas new to me, such as sports. I find sports dull and never understood the freakishly intense emotion it brings out in some fans. Who are those people? I used to think. Then I attended Claude’s first basketball game and discovered one of those freakishly intense people lives inside of me. Every time he played, I cheered for Claude and his teammates (and even the kids on the opposing teams) until I was hoarse.

First, Framework and Tools. Then, Step Aside.

Max remarks on the openness with which my boys discuss things with me that he would never have shared with his mother or his father. Yes, things like their bodies and sex. But also money and bills. Politics and religion. In my mother’s house, money was only discussed as something she never had enough of and I was forbidden from looking at the bills. Politics and religion were also expressed as an exclusive and obvious choice—those who didn’t believe what my mother believed were described as fools.

I have chosen to go the other direction. I talk with my children as people and, when appropriate, am transparent with them regarding adult matters. When they were each about thirteen, I sat down with Claude and later Hugo and showed them my bank accounts, pointing out the few deposits and the many expenses. We are a team with finances, working together to achieve both our mutual and individual goals. I’m confident all of them will successfully manage their own fiscal lives.

The boys know my politics. I have taken them to Democratic events all their lives, from hearing presidents speak to canvassing neighborhoods. When Bill Clinton was running for re-election, I was eight and half months pregnant with Hugo and carried two-year-old Claude on my shoulders at a rally on OSU’s campus. The staff moved us to the front of the crowd. I suspect we made for good optics. All my children have worked on elections and gone to the voting booth with me. On Claude’s eighteenth birthday, before I took him to lunch, we went to the Summit County Board of Elections so he could register to vote. I hope they remain Democrats; I’d be lying if I said otherwise. But more importantly, I want them to consciously consider the role of government in their lives and be active in the democratic process. Yes, even if they vote differently than I.

As for religion, recently Claude and Hugo both have expressed that they see the Buddhism they’ve been raised with more as an ideology than a religion. I do not disagree. The form of Buddhism we practice mirrors key aspects of twentieth century western philosophy, particularly that of existentialism. That said, can meditation be a pathway for a more open mind and heart? Yes, of course it can. Are Buddhist teachings religious? Yes, of course they are. Does it matter if my boys and I don’t believe everything we learn through our studies in Buddhism? No, for I hold suspect the unquestioning believer of any religion. I have given my children an awareness of their spiritual lives. What each of them, or anyone, believes is each soul’s purview and never mine to dictate.

Secrets and Lesser Parenting

When I have the time to reflect, I see the long view as a mother, including the diminishment of my importance in the lives of my boys, as they become men. But in heated moments, I’m not so mature.

One evening in late December, Max and I sat at the kitchen table talking with the boys as they cleared the dishes after dinner. Lyra was in my lap when Claude stopped and, standing next to me, began texting on his cell phone. Suddenly, he was off in another conversation, separate from the one occurring in the physical space his body occupied. For several minutes he giggled, typed, paused while reading, giggled and typed again.

“Who are you texting?” I asked him.

“A friend,” he answered without looking up from his phone.

“Well, yeah, but who is it?”

“Just a friend,” he said more emphatically, his eyes still locked onto the small screen of the iPhone I had given him at Thanksgiving.

Okay, I don’t know how other parents feel, but when my kids don’t answer me directly, I become something like a hardened detective. If I can’t get a straight answer, it must be because the child believes I won’t like the answer. But in this case it didn’t make sense because there isn’t anyone Claude shouldn’t text.

“What is your friend’s name?” I asked Claude more pointedly.

“You know,” he said with surprising intensity, “I’m an adult and I don’t have to tell you who I am texting if I don’t want to!”

At another time I might have been able to calmly say, “Well, let’s talk about that.” But at that particular moment, it stung. Perhaps it stung because I had just spent all my savings paying for Claude’s first semester of college when his fees included an Apple laptop and expensive software. Perhaps it stung because just a couple weeks earlier Claude had called me repeatedly and with no small amount of confusion as he tried to figure out how to proceed with a young woman who had been giving him mixed messages and now I was being yelled at for a pretty unintrusive question. But mostly I believe it stung because I felt displaced. I felt the first twinges of no longer being the most important woman in my child’s life. Even though I know this is a inevitable and good thing; they all need to launch out into their own lives.

“If you are such an adult then why is it you are on my phone plan and not one of your own?” I asked and behaving badly, as many a scorned woman will do, I followed with a string of similar questions. I even felt like returning his Christmas presents, though fortunately I had the sense not to say so. Taking the baby with me, I went upstairs and sulked on my bed as I nursed her to sleep.

Later, after talking with Max, Claude came up and stretched out on the foot of the parental bed, which feels like the boat for family emotions. It is on that bed that our teenagers often lie with us and tell us their dreams and their fears. They have asked us what to do and sometimes even what to think. That night, Claude told me he needed to figure his love life out on his own. I agreed. That is, afterall, the goal of all my parenting: for them to become successfully independent adults, with fully formed minds, spirits and bodies. That doesn’t mean letting them go is easy.

Who knows if what I have done has been good or a bunch of hogwash? And how much influence do parents have really? How much should they be allowed? I think of poet Philip Larkin’s dismal take on parenting (Larkin – This Be The Verse) and hope I have done my children no harm. Having a second set of younger siblings has made the boys nostalgic for their own childhoods even before they’ve fully left them. So either I’ve done okay, or we have a strong case of the Stockholm syndrome developing here at Whoopsie Piggle.

Chitty Chitty Bang Bang, that’s what you should get us for Valentine’s Day,” said Hugo. “I loved that movie so much when I was little and I know Leif will too.” 

IMG_1366

POSTSCRIPT:

The afternoon I posted this piece, Hugo read it when he came home from school because I’d told him he had been quoted. Sitting in front of a laptop he said outloud to his brother who was a whole state away, “Oh, my God, Claude, I can’t believe you said that, what were you thinking?” referring to Claude telling me that as an adult he did not have to reveal who it was he was texting. Then looking at me across the room after reading further Hugo said, “Yeah, no, Mama, there is no other time Claude could have said that and you’d have been cool.”

“Well, sure, maybe in the morning when I’m not so tired,” I said.

“You mean, Ms-Don’t-Talk-to-Me-Until-I’ve-Had-My-First-Cup-of-Coffee? No, I don’t think so,” Hugo said as he laughed.

Nobody knows anyone so well as children know their parents.

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Lyra’s Latest: Finding a Pediatrician or The Continuum of Jewish Women

Newborn Lyra

Newborn Lyra

The day after Lyra was born, I called my obstetrician, who had willingly provided prenatal care and medical back up for my home birth. And I explained that while otherwise healthy, Lyra appeared to have Down syndrome. Within minutes, I received a call from the pediatric practice she uses for her own children telling us to come in immediately. Lyra was seen before she was even 24 hours old. The doctor who examined our newborn daughter gave us the necessary referral to the Genetics Center at Akron Children’s Hospital where we went the following day to confirm that Lyra has Down syndrome.

True Confession: My children do not go to a pediatrician

Okay, so maybe it’s not such a biggie, as in confessional biggie, that my children go to the same family practice as I do. But let me add that I have never scheduled “well baby visits” for my children. My kids are, for the most part, fabulously healthy. I take them to the doctor, or in our case the nurse practitioner, when they are sick or need a physical for sports. How my children are growing compared to other American children was never something I was interested in enough to spend time in an office and pay good money to find out.

Frankly, the point of these so-called well baby visits is primarily to keep the American Academy of Pediatrics (AAP) vaccination schedule, which I do not follow. Vaccinations have been a controversial issue since before Claude was born nearly 20 years ago. Like many things (such as hospital vs. home birth, educational approaches, how the food we eat is grown or raised), I have questioned the status quo on vaccination, but I also avoid zealotry. Proponents and opponents of vaccination are both ardent in their opinions. I am not opposed to vaccines, yet neither do I follow the recommendations of the AAP. I wait until my children are a year old to begin vaccinating them (except for Hib); I don’t give them all the vaccinations that are recommended (most children are not at risk of contracting hepatitis, for example), and I do not have them administered all at once. I am not advocating my approach for other families, but rather this is the compromise I have come to for my family after much research and many conversations with a wide array of health care providers.

Max and I soon understood, however, that with Lyra we would have to adjust our approach. This included finding a pediatrician with whom we felt we could develop a relationship as we encounter health care concerns with our daughter that we’ve never had with our other children. The pediatric practice my obstetrician sent us to seemed appropriate for a number of reasons. First, since they are affiliated with Akron Children’s Hospital, it presumably would be easier to coordinate Lyra’s care and records with other ACH docs, such as her ophthalmologist. Second, one of the pediatricians in the practice has a nephew with Ds, something I had learned through the Upside of Downs support group. Finally, it seemed appropriate precisely because it is the practice to which my OB takes her own children, as she is the physician whom I have trusted through two “advanced maternal age” home births.

But then, after our first visit, I had to call this pediatric practice without the assistance of my OB. On three separate occasions when I called, the phone rang once and then I was put on hold without any human interaction. For up to 15 minutes, I listened to techno hold-music that was regularly interrupted by the recording of a woman’s voice that went something like this:

Letters to keep heat on in the home are only signed during the months the state accepts the letters and will only be signed if there is a medically compromised child in the home.

After hearing this condescending message up to 30 times per call to the office, I felt like it was my heat that was going to be turned off and that I really ought to argue with someone about it.

The last time I called that pediatric office was to ask for a prescription to have Lyra’s hearing tested. When a live human being finally answered, she told me I would need to leave a message on the nurses’ line and someone would call me back within 24 hours. I left the message but never, ever received a return call. No matter how qualified their physicians might be, a practice with a phone system that bars access is not a workable option.

The Continuum of Jewish Women

One of the beauties of middle age is some narrative arcs reveal themselves. And so it is that at nearly every significant, if not extremely stressful, juncture in my adult life, Jewish women have helped me out. I can’t say why that is, though I no longer believe it to be coincidental because it now seems predictable. Here are three examples from a much longer list:

1)    University. When I wrote my undergraduate thesis in religious studies at Ohio State University, my departmental advisor was a committed devotee of the then-rampant theory of Deconstruction. He felt I worked like an old-fashioned historian, one who looks for facts and truths. While I understood irreducible truths are hard, if not impossible, to find in human interactions and events, I was never able to discern how he wanted me to approach my project. I met with him regularly and left every time feeling frustrated and rather dumb. In the end I went with what I knew how to do (hypothesis, research, results), and my advisor was unwilling to approve my thesis. On my thesis committee was a history of art professor with whom I had taken four classes and who later became the dean of the graduate school at OSU. While strongly disagreeing with my advisor, she told him she would work with me to craft my thesis to his satisfaction. And she did, even though her own scholarly research and writing, along with teaching, made her one of the busiest professionals I have ever known. Ten weeks later, my thesis was unanimously approved, even though the substance of the work remained the same.

2)    Children. After several frustrating years of trying to understand why my oldest son, Claude, wasn’t learning in school, a triumvirate of Jewish women helped turn things around. An Orthodox psychologist first diagnosed his dyslexia and then she helped me to navigate his remediation. For several months, Claude worked every Sunday morning with an Orthodox occupational therapist at her home in an Orthodox neighborhood in Cleveland (during his appointments I went to the neighborhood bakery and bought seeded corn bread). For several years, I took Claude twice a week to the home of a tutor I found through the American Dyslexic Association, who, yes, is also Jewish. After Claude finished tutoring, Jules too was diagnosed with dyslexia and back we went. With little break in between, I’ve been going to this woman’s house for a decade. Without these three women, I don’t know how I would have facilitated my boys’ mastery of reading (mastery may sound like hyperbole, but Claude scored 34 in reading on his ACT, which is nearly perfect).

3)    Divorce. There is an aphorism in the legal profession that clients choose attorneys who have similar personalities to their own. Jerks pick jerks, efficient types pick efficient types, et cetera. I like this adage because my divorce attorney is a class act who worked with me for just shy of four long years (including post-decree enforcement). Highly regarded by her colleagues and the courts, she and her associates are hard negotiators who worked to end things quickly without sacrificing either what my boys and I needed or an ounce of their own professionalism. That the process took so long is due largely to the fact that the defendant went through a series of four attorneys and with each succession, we had to start all over again. Divorce sucks. A protracted divorce with someone driven by animosity is a nightmarish ordeal. I can’t imagine how I would have gotten through it with any other attorney.

Back to finding a pediatrician

Through the Upside of Downs organization I have met a number of families from Medina whose pediatrician has an eight-year-old daughter with Ds. People in Akron don’t often go to Medina, 15 miles west, for things like doctors, even though they commonly drive 40+ miles to physicians in Cleveland. I decided to meet Dr. M and after the first call, I knew we had found our practice. The person who promptly answered the phone also scheduled our appointment, asking me, “Dr. M loves patients with Down syndrome and she schedules longer visits with them, is that okay?” When Lyra and I went to that first appointment, Dr. M spent over an hour and a half with us. At the next appointment, only a couple of weeks later so we could monitor Lyra’s weight, Max came too. Again, Dr. M spent another hour and a half with us and she told Max, as she had previously with me, “I’m a New York Jew and I’m just gonna tell you what I think.” Well, of course she is.

And what does Dr. M think?

She thinks we can have a respectful dialogue about vaccines and she backs up her recommendations with data. Just as importantly, she doesn’t try to make me feel like a bad mother for not following the standard of care on this issue.

She thinks that the more intelligent the parents, the more likely a child with Ds will have a higher IQ, but the kids with Ds who have higher IQs also have greater rates of ADD. “I know what you’re gonna ask,” Dr. M said when I was going to ask what was the highest IQ we could expect, “but first you tell me the highest level of education you and her father have.” It was only after I answered that she told me the correlation between parental intelligence and that of children with Ds.

She believes in pushing early reading because it comes easily to many kids with Ds and not only does it give them another way to communicate, it makes them feel good about themselves. Note: Many kids with Ds read by age three. They are visual learners with strong short-term memories.

She believes in physical and speech therapies and wrote prescriptions for me on our second visit. Crawling strengthens the brains of all kids, making it particularly important for kids with Ds to learn. But kids with Ds often don’t crawl without intervention (they scoot or roll to get where they want to go). Speech therapy involves anything related to the mouth and we have not had much success in getting Lyra to take a bottle.

Basically, Dr. M believes in getting in there with all available resources and pushing these kids to be the best they can be. In so many ways, it is little different than what I learned to do with Claude and Jules to overcome their dyslexia. It doesn’t mean abandoning all else and focusing our entire lives on Lyra, but rather incorporating into our daily lives what will help her develop and succeed to her highest potential. For years, driving to school with Claude and Jules has been the time to practice sight words. Whenever I sit with Lyra in my lap, I move her around in ways that help strengthen her back and core muscles. Not the entire time, but a little here and a little there.

At our last visit, Dr. M went over the results of the echocardiogram Lyra had in late November. “So they think there’s a shadow here,” said Dr. M as she drew on the exam table paper a box divided into four sections and then told me to imagine it was a heart. Pointing to where the shadow was on Lyra’s echocardiogram, she said, “This is the patent foramen ovale and it is found in all fetuses because they are not using their lungs and, therefore, the heart circumvents the lungs in utero. After the baby is born, this hole closes up in the first weeks of life. Typically. But in 20% of adult autopsies on the general population, this hole is still there. So, we’ll check again in a few months. Other than finding nothing, this is the best result you could get on her echo.”

Yes, that’s how she talks and it comes out rapid-fire fast. I love it. Hit me with more than I already know and if I don’t understand, I’ll ask. If Lyra really does have a patent foramen ovale hole, it will likely close on its own. If it doesn’t, that doesn’t necessarily mean she’ll need it surgically closed. But if she should, it is not open-heart surgery, which is hard on a patient. Instead, foramen ovale holes are surgically closed by going through a vein in the artery.

“So let me get this straight,” said Dr. M at the end of our last visit, “her heart is good, her hearing is perfect, her growth is average. Other than the cataracts in her eyes, it looks like this kiddo has no other major health concerns, right?”

“Yep, none that I am aware of,” I said.

“You are really, really lucky, you know that?”

Lyra today. Her feet love each other and she is most happy without socks

Lyra today. Her feet love each other and she’s most happy when rubbing them together sock-free.

Yes, yes I do. We are very grateful that our daughter does not have any of the many serious medical conditions that often accompany those diagnosed with Down syndrome. Max and I frequently say so to each other. But we still have a child with a genetic disorder and we are lucky because of the enormous support we have in our community as we meet the needs of our youngest child. Not only the professionals, like Dr. M., not only the other families we’ve met through the Upside of Downs, but people who are part of our wider community and have been since before Lyra’s birth. Friends from the Waldorf school, friends from our professional lives, friends who are just friends—so many of whom have step forward with a kind word, a meal, prayers, offers to transport other children, teach us all sign language. Our day care provider, who performs reiki and went to speech therapy with us, so loves Lyra that I don’t ever worry about leaving her.

I have at various times in my life felt isolated, even when among others. This is not one of those times. If, as I wrote in my last post, Lyra galvanizes us as a family, she also resonates outside our family, revealing to us just how we are connected to and held by our larger community. For this, we are indeed really, really lucky.

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Lyra’s Latest: Wee Teeny Peanut

Weighing the difference: the cat is bigger than the 5-month-old baby.

Weighing the difference: the cat is bigger than the 5-month-old baby.

In the roughly three months in which I’ve been writing this blog, the WordPress.com stats reveal far and away that the most popular posts are those about Lyra. While Whoopsie Piggle will never be exclusively about our daughter, I have decided to include periodic updates on her, titled, “Lyra’s Latest,” and, like today’s post, will have a secondary title regarding the specific update. I came to this decision while writing about the past few months of Lyra’s life, which made for an unreasonably long post—even for me. This week I plan to post a handful of “Lyra’s Latest,” cut and refashioned from that intial tome of a post.

* * *

Here is a near verbatim conversation I have several times a week:

Friendly Stranger: Oh, what a sweet baby, that’s a new one! How old is she?

Me: Five months.

Friendly Stranger: Really? Oh, my, is she small. Was she a preemie?

Me: No.

Friendly Stranger: How much did she weigh at birth?

Me: Seven pounds, ten ounces. She has Down syndrome and they tend to be smaller.

Friendly Stranger: Really? Oh, bless her heart, she’s so beautiful.

I think so too, but Lyra is not beautiful in the conventional sense. For one thing, she’s still pretty bald, as were all my babies for the first six to twelve months of life. And some of these well-meaning strangers tell me Lyra doesn’t look like she has Down syndrome, which in my opinion isn’t true. Her eyes have small openings and turn slightly upward in the outer corners as do those of most people with an extra 21st chromosome.

A dear friend, whom I’ve known since I was fifteen, has a niece with Down syndrome. She called me a few days after I had written about Lyra’s diagnosis on Facebook. But first, she called her sister to ask advice on what to say or, perhaps more importantly, what not to say. I have had the occasional person apologize when I told them Lyra has Ds. Just last week someone asked me if I was devastated when I learned. No, I wasn’t but neither am I offended by these questions and comments. I put them into the same category I put the things people say to someone who is undergoing a difficult time in life, be it the loss of a job, the loss of a loved one, or a divorce—it’s better to say the wrong thing than to say nothing at all.

On the other hand, many people tell me how all those they’ve known with Ds are incredibly loving. While I cannot speak to another person’s experience, I hesitate to categorize any group of people so broadly. It reminds me of the “noble savage” theory taught in anthropology classes. It is easy to dismiss the humanity of a group of people, such as indigenous populations, if they are described as entirely savage (generally prior to being conquered) or more advanced spiritually (generally post-conquest). Kids with Ds have behavior issues just as kids without Ds do. A mother told me that her daughter with Ds would use her hypotonia to make her body entirely limp when she didn’t want to do something. Ever hear of “dead weight?” It’s used to describe how heavy someone is to carry when they are unconscious and what a child with Ds is like when they make themselves go limp. Imagine that as a tactic in the arsenal of a toddler’s tantrum. In public. For now, Lyra is too young to have tantrums and so small it wouldn’t matter if she did.

When someone apologizes because I’ve told them my daughter has Ds, I take it as an acknowledgement of the work I have ahead of me that I had not anticipated when I was pregnant. Like my mother-in-law once said to me, “No matter how sweet they say people who have Ds are, it is not something you asked for.” No, it wasn’t. But there are many things that a child can be born with that are not so easily diagnosed as Ds. Most autistic children do not begin presenting their symptoms until they are toddlers. And children with mental illness often appear perfectly healthy until adolescence or even later. The emotional journeys of parents who have children with autism or mental illness is as challenging, if not harder in many instances, than having a child with Down syndrome. The test for Ds is not subjective, it is clear and many families, like us, know their child’s diagnosis almost immediately after birth, if not before. Because I have two sons with learning disabilities, I have a sense of the anguish of parents who know something is not quite right with their child, but for years cannot figure out what the diagnosis is and, therefore, how to provide the appropriate support.

Little Lyra and big Boggart, January 27, 2012

Little Lyra and big Boggart, January 27, 2012

As for her size, at her five-month check up with her pediatrician, Lyra was one ounce shy of weighing eleven pounds. That puts her in the fourth percentile on the growth chart for typical children. But there is another growth chart, one for children with Ds. On that chart, Lyra is in the 40th percentile for weight, 50th for height and 60th for head circumference. In other words, pretty average. My boys, on the other hand, were all big babies; Hugo weighed ten pounds at birth and Jules was just two ounces smaller. None seemed to lose any birth weight and people often assumed my newborns were at least three months old. Before Lyra, I’d never used newborn-sized clothing for any of my babies. At five months plus, Lyra still wears some newborn items and nothing bigger than size 0-3 months. It’s like having a baby doll. In fact, more than once have I been asked, “Is that a real baby or a doll?” Seriously.

Most of the time, I don’t notice Lyra’s size. She’s just our baby. It is when I see other babies that I realize how diminutive she is. At the home daycare where Leif and Lyra go each week, there is a family with whom we share some uncanny similarities. The mom has the same first name as me, though she spells hers “Hollie.” Last year, she and her husband were, like us, expecting their fifth child in August. Baby Jack is two weeks older than Lyra but when I see them together, they look months apart. For one thing, Jack is a third as big as Lyra, weighing more than 15 pounds. He has huge eyes and is developing beautifully. Next to him, Lyra looks like the newborn people mistake her for.

And really isn’t that how it is with much of life? By comparison with others, we gain perspective on our own lives. What we do with that perspective is up to us—whether we open ourselves to envy or just observe an apparent difference, understanding that other differences, as well as similarities, exist. Throughout my childhood and into my 20s, I envied the lives of other people—from friends and family to complete strangers. I used to wish I’d been given up for adoption at birth or given to my grandparents to raise, so that I could have had a different life. But as time has passed and I’ve watched our lives unfold, I see everything before led to where I am now, with the family that is far more than I had ever imagined. Sometimes that means far more chaos and complexity than I’d imagined, but for the most part it means more love and contentment. And our wee teeny peanut, like some mighty-mini superheroine, galvanizes the seven of us as a family.

Definition of GALVANIZE

transitive verb

1

a : to subject to the action of an electric current especially for the purpose of stimulating physiologically <galvanize a muscle>

b : to stimulate or excite as if by an electric shock <an issue that would galvanize public opinion>

2

: to coat (iron or steel) with zinc; especially : to immerse in molten zinc to produce a coating of zinc-iron alloy

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Motherwriter

Writing is not my hobby. When I am not writing, my brain writhes.

In the fall of 2008, I enrolled in a course at the University of Akron titled “Southern Women Writers.” After first reading Florence King’s Southern Ladies and Gentlemen, a humorously accurate guide to the characters, both real and literary, of the American South, we studied a different writer each week. The first was Civil War diarist, Mary Chestnut, and from there we journeyed through the decades and read some authors I’d long admired, such as Flannery O’Connor and others I was shocked to have not previously read, such as Katherine Anne Porter, who in my opinion deserves greater attention in the canon of American literature. Well before the course ended, I had become resolutely jealous of the language resources any Southerner, from the Atlantic Coast to Texas, can rely upon without sounding hokey. A Yankee cannot plausibly employ colorful phrases like He doesn’t know me from Adam’s off ox. But a southerner can.

Beyond language, there was a more personally significant take away from the class. Several weeks and authors into the semester, I noticed a commonality among all the women we had read: None were mothers. In fact, by semester’s end only a handful of the writers assigned were also mothers and those women lived and wrote exclusively after 1950. I asked the professor why this was, as if I didn’t already know, and he explained the difficulty women have had in either choosing to have a career or choosing to have children.

In 1929, Virginia Woolf published A Room of Her Own, an extended essay about women both as writers as well as characters in fiction. In it, Woolf writes: “a woman must have money and a room of her own if she is to write fiction.” I find her essay, which also expounds the importance of formal education for women, to be as relevant today as it was 84 years ago. After years of sharing my writing space with others—be it as a shared office, a dressing room, and finally a baby’s nursery—I finally have a room of my own in which I write. I hope to one day save enough money to have the wall behind my desk built out with floor to ceiling bookshelves. But for now, I focus on my computer monitor and try my best to just keep writing, ignoring the towers of boxes stacked where the bookshelves will one day be. My mantra, given to me by my MFA thesis advisor, is Ass+Chair. Though crude, it is an effective reminder that being a writer means you have to write.

Enter five children

Previewing this post with my assistantWell, so they came one at a time, but their effect was immediate. When I write, I need a quiet house and prefer no interruptions. The best way to achieve this condition is to get everyone out of the house. Alone in a room of my own is what I need. Babies rarely sleep when you need to write or when the writing juices are flowing. Luckily, I have a partner who sends our two pre-schoolers to daycare three days a week. However, Lyra only stays for three to four hours because she refuses to take a bottle and by noon she comes home and nurses mightily. Some afternoons, she falls asleep and lets me write a little bit longer but, like I said, these gifts of time are rare and certainly not predictible.

During Winter Break, not only were the big boys home, our daycare provider reminded us how much we need her by taking off for a week and a day. Writing was catch as catch can. A regular stream of offspring sluiced up to my desk and asked me questions that could either wait or be sorted out without my input. Towards the end of break, when one of the Great Interrupters wanted to know if he could scramble eggs for everyone, I yelled at him, “Is the house on fire? Are you bleeding? Is someone else in the house knocked unconscious? Then don’t come in this room!” It might seem ironic because I was writing about random acts of kindness that day, but I do not confuse kindness with martyrdom. When I finally posted that last week of Winter Break, I felt tremendous relief to have finished but I was also late in picking up Lyra. In my rush, I hit the post button before filling in the title block. It was sent to everyone and posted on Facebook sans title.

Re-entry to normalcy, or at least scheduled time for the kids to be away and me to plunk my rear end in my desk chair, has been like working with an untamed animal. Just when I think I can grab it, it bolts away. On Tuesday, instead of writing, I drove Claude back to school. On Wednesday, nothing went as expected and Lyra was only at daycare for an hour. I treat writing like a job and let things like laundry and dishes go during my scheduled writing time. But the first week after break I also used some of that time and applied for other jobs, the kind with paychecks.

Money and a Room

I have the room and, limited though it is, structured time to write. But the money is another problem to solve. Flannery O’Connor was supported by her family. Katherine Anne Porter often depended upon the largesse of friends to house and feed her. Virgina Woolf herself came from a wealthy family and her husband, Leonard, supported her writing career.

I tell my children that how rich or poor you feel is all a matter of choice. I also tell them that if there is something they want to do, we just need to think of a creative solution, don’t let the funding be an obstacle. Hard work helps too and all three of the big boys work for the money they need to fulfill their own desires. Claude and Hugo are employed in the typical sense—Claude works as a monitor in an art studio at his university while Hugo washes dogs at a dog salon. Because he is only 12 and cannot yet be hired, Jules has a trickier time making money. Last fall, I suggested he put together a business proposal and present it to Max and me. Jules now cares for the household pets, providing what goes into, and cleaning up what comes out of, the two dogs and four cats. He is also responsible for one dinner a week, generally on Fridays. Rapidly becoming an excellent cook, Jules is working his way through The Best Recipe cookbook. This past Friday, he made hoisin chicken kebobs with broccoli and shitake mushrooms. There were no leftovers. On Sundays, Jules presents us with his invoice for the week past.

But it’s not as easy as I tell the boys. I graduated with my MFA in the middle of the worst economy of my lifetime. While I was in graduate school, I made ends meet by substitute teaching and taking out significant student loans, loans I have not even begun to pay back. The year after I graduated, I continued to substitute teach at the Waldorf school and also worked in the school’s office up until Lyra was born. We all thought that long before Lyra was born, I would find fulltime employment—I’m well educated, experienced and have applied to more jobs than I care to innumerate. Listening to stories on NPR of how despondent job seekers have become in this economy hits home. Time and again I have applied for positions for which I am ideally qualified and yet I do not even make the first cut. I have applied repeatedly for work I have done in the past, jobs that at the time I thought of as just stepping stones in a longer career. Friends who are employed tell me their employers receive so many responses when hiring that one résumé blurs into another and another and another.

My big boys and I are lucky because Max will not let us starve. But neither can he, nor should he, fund my children’s every needs. That is up to me alone and, frankly, it is important that my children see me—a woman—capably managing adult life, including supporting their ambitions when it makes sense. To purchase the computer Claude was required to have at school this past fall, I obtained a credit card with zero percent interest for 15 months even though I hate credit card debt. I lacked that kind of support in my own upbringing and while I still managed to put myself through college, I floundered on my own. I see Claude, a freshman in college, as not only a better student than I was, he is asking better questions of himself. He regularly talks with Max and me about what he wants to do in life and how he should get there.

Back to Art

Throughout history (and presumably before) the majority of artistic work by women has been consumable items—food that is eaten, rugs that are walked on, clothes that are worn, blankets that are slept under, and so on. On the other hand, the artistic work of men resides in museums and libraries. Think things have gotten any better? Each year, who gets published and who wins the important writing awards reminds us that this gender imbalance in the writing professions is hardly a thing of the past. For an article on recent statistics, click here: The Count.

Many men manage to have both families and jobs with paychecks and successful artistic careers. And, perhaps most consistently, those men who manage it all have something few women do: A Wife. The inaugural edition of Ms. magazine included the essay, “I Want a Wife,” by Judy Brady:

(http://bcs.bedfordstmartins.com/everythingsanargument4e/content/cat_020/Brady_I_Want_a_Wife.pdf).

Many considered this essay, in which the lives of wives are shown to be little different than indentured servitude, to be a manifesto for Second-wave feminism. As women entered the workforce in the 1970s and beyond, this depiction of wife=servant (or slave) was considered a thing of the past, but this essay reads like the script for the marriage I left in 2007. I think that, not unlike racism, which has become perniciously subtler in the post-civil rights era, so too have women of my generation struggled with implied expectations. The published male authors I know who are also dads may have wives who work, but overwhelmingly their wives are the ones getting the kids to to everything from playdates to the dentist. In all professional families, women are still putting in 40 hours a week to family care while men put in 21. Last October, Barnard College president, Debora Spar, wrote in Newsweek:  “See who in any houshold schedules the kids’ dental appointments. My own husband, lovely though he is, seems not to be aware that our children even have teeth.”

I was six years old when the first issue of Ms. was published and by all means should feel I am the direct beneficiary of Second-wave feminism. But I didn’t make the leap so well. I long assumed it was because I was not encouraged to think about a career in which I could support myself and perhaps my children. My parents never discussed educational or career plans with me. I now see how the choices I made as I launched into early adulthood fit into a larger context, which has been described in the past decade by a few writers including Judith Warner in her book Perfect Madness. Women of my generation, Gen X, were caught at the pivotal point of social change in women’s roles. As such, we were told we could be more than is humanly possible, i.e., we could have it all: better careers than our fathers while also being better mothers than our own by raising children attachment-style. And all the while we would stay thin and young looking and able to converse on any au courant topic. We would be Super-Professionals and Super-Moms looking Super-Sexy and, to round it out, live in Super-Stylish Homes. And it wasn’t just that we could have it all, to have less was a certain sign of failure as a modern woman.

Who Defines Success?

So here I am today with five kids who are turning out just fine and a résumé that barely grazes upon my actual skills because it’s so hither and thither. For a time, a friend and I had a job search support group of two. She also began looking for work when the economy went south and we would share information on job listings we thought might be good for each other. Eventually my friend was hired as an administrative assistant at a local university, but she continues to let me know of any appropriate positions she hears about. She’s been working now for over a year and listening to her I am reminded that jobs come with politics and personalities as well as paychecks.

A few months back she asked me what my ideal job would be. Easy. To get paid to write. “Yeah, well, all right, dearie. But seriously, what kind of job do you want?” Because we were on the phone she could not see me blush at her chiding me for wanting to make money as a writer. I had been honest when she had asked of my “ideal” rather than “likely” employment.

I know mothers who manage to publish and work jobs that provide paychecks. However, either their children are older or they have significant help from their families—as in retired parents who, when needed, act as de facto nannies. I also have a friend whose book should be published and, in my opinion, optioned for film. But she has two children under the age of five and works two jobs to help support her family. That doesn’t leave much time or energy for the business end of publishing and I cannot help but wonder if her situation would be different were she a man.

True Confession: I live a comfortable life. But as a woman, I feel required to justify my need to write and my desire to publish.

I must write. I must raise my children. And I must earn money. The first two dovetail for as much as they interfere with my time at my desk, my children provide for me both a life and material that are endlessly rich. Virigina Woolf didn’t have to earn her money nor raise children, yet her assessment of what women need to write resonates into this century because our society does not yet value equally women’s writing with that of men. Successfully writing is an even trickier task as a mother, and though certainly not impossible, the emotional, if not financial, support of family is essential, at least for me.

Postscript of Sorts

This particular post has taken me more than a week to write due to the aforementioned actors and activities. Along the way something changed: two days ago I was officially hired for a job I can do at home that is related to writing—proofreading. While it will not provide the security and benefits of a full-time position, it does give me the flexibility to continue writing and take Lyra to her appointments.

Next act: balancing while juggling!

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Beginning Today

A laminated sign that hangs on our cereal cupboard knob.

A laminated sign that hangs on our cereal cupboard knob.

Each morning the Plain Dealer is delivered to our doorstep. On school days, Hugo gets up at 5:30 am, starts the coffee, feeds the dogs and retrieves the paper. Because of his intense performance and rehearsal schedule, mornings are when Hugo does most of his homework. But first, Hugo reads the comics. Jules usually calls second and because Max is hurrying off to work, I let him read them before I do. Some days I don’t get to them until the end of the day and when that happens, I verify whether my horoscope panned out accordingly or not.

But now, on the dark mornings of winter break, the boys have been sleeping in and I read the comics while they still dream in their chilly bedroom over the garage.

On Monday, the comics dwelt overwhelmingly with New Year’s Eve and specifically with resolutions for the New Year. I had moved on to the other sections of the paper when the boys joined me one by one at the table with their coffee and cereal. “Have any of you thought of anything you want to do differently in the New Year?” I asked them. Nobody responded coherently and taking advantage of the relative silence, I went on. “We’ve had a wonderful year if you think about it: Claude has just finished his first semester of college, Hugo is doing well in Madrigals, band and school, Jules has just grown up in so many ways. We had Lyra this year, Max is in a good place at work, I’m writing regularly.” It would be fair to say that Leif has been tyrannical as a two-year-old, but kindly nobody did.

I also mentioned the dark events in the past month—the shootings in Newtown and upstate New York as well as the horrific rape and murder of a young woman on a bus in India. Violence and suffering are at the elbow of merrier holiday cheer this year. None of the victims could have predicted these events and taken preventative measures. Which means there is nothing to rule out similar events happening in our own lives. Thinking of the loved ones of victims of events known and unknown subdues my joy at what a good year 2012 has been for my family.

Less notably so too has the cold and flu season subdued our holidays. Often, I don’t catch the colds that the boys bring home and share with one another like a pocketful of tricks. I eat well, take my vitamins and wash my hands frequently. When I do fall to their viruses, I’m often last. I fell to the latest sinus virus two days after Christmas and, as Hugo says, it’s a hell of a cold. After talking with the boys about their resolutions, I took more medicine and by nine in the morning was back in bed. Lying there, I caught up on email with my phone.

When I go to bed, particularly in the daytime, I imagine a sonar implant going off in each of the children’s brains because within five minutes they start appearing in the bedroom I share with Max. The first to arrive on Monday morning was Hugo, still in his robe. “Go and get Claude and Jules, Max too, and tell them to come up to the bed,” I told him. Each Sunday, NPR sends me an email of the previous week’s most emailed stories, it’s a great feature and I highly recommend signing up for it. Once everyone had flopped onto our queen-sized bed, I read to them one of the top stories.  It was about a study of 9- to 11-year-old children who intentionally performed daily acts of kindness. These kids were found to be happier and more accepting of their peers than the control group. Furthermore, the piece mentions similar findings in studies on adults. (Random Acts Of Kindness Can Make Kids More Popular : Shots – Health News : NPR)

“You know,” said Max, “I heard on the news yesterday about someone giving a Starbucks barista $20 to pay for the people behind him in line. One of those people also gave money and for most of the day everyone’s drinks were paid for by someone else.” I had heard that report too but then Max went on to tell me something none of us knew, which is that he regularly buys coffee for the person behind him at Starbucks. Max has a long commute to work and many mornings he stops halfway for a cup of coffee. “It makes a lot of people uncomfortable and I have to tell them ‘No strings, just let me get your coffee for you,’ but last week there was a man who came up and said to me, ‘You probably don’t remember me, but once when I was having a bad day, you bought my coffee for me and it made a real difference.’”

So instead of generic New Year’s resolutions, I asked everyone to think about doing random acts of kindness for a day or two and then talking about them at dinner. On New Year’s Day, Hugo shoveled the back parking area without being asked. Jules made bacon and pancakes for everyone for breakfast. Claude shoveled the sidewalk by the street, which is difficult because the pavement is uneven and the snow, much of which was plowed off of the street, is crustier. Max fixed a small wooden bowl my grandfather had made and my grandma had given me, which had cracked and sat in stacked layers on my dresser for nearly two years. But I who had initiated this kind act challenge, found it difficult to find an act of kindness to perform. I think the word “intentional” has me hung up. It seems like cheating if in an impromptu situation I am nice as opposed to planning a kind act. By day’s end, I felt as if I’d been generally nice but had failed to produce a planned act of kindness.

Human history is woefully stuffed with tales of aggression. Last month’s headlines were horrific, but little different than any month previous when considering all countries and not just our own. And the past is unchangeable. I like the political mantra Think Globally, Act Locally. I recycle, buy locally when possible, consider how the food I put in my mouth was raised and prepared. I always vote, I volunteer for campaigns and I give money to local candidates. I wonder if, along with environmental and political issues, random acts of kindness fulfill the grassroots goal of local action affecting global outcomes? I think most often I am a local optimist and a global cynic. Is Think Globally, Act Locally just a placebo to feel better about an individual lack of empowerment to change the world’s problems? Occasionally one person, like Dr. Paul Farmer who is the subject of Tracy Kidder’s book Mountains Beyond Mountains, is able to change a segment of the world for the better, but few of us have the ability or desire to be a Paul Farmer. The best we can do is facilitate the Paul Farmers we know while ethically comporting our own lives. (Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, a Man Who Would Cure the World: Tracy Kidder: 9780812973013: Amazon.com: Books.)

Back to the Role of Parent

I stated in my first post that I do not want this to be a just another mommy blog, that discussed in these posts will, yes, be my family, but also questions on life and politics. But so often, if not always, all points swing back to family.

Family Is Practice

My children have been raised as Shambhala Buddhists and so far continue to view their spiritual development within that paradigm. They all know how to meditate, which is in some ways the equivalent of prayer in other faiths, and ideally done daily. While I don’t monitor them, I’m fairly confident that nobody in this house can claim daily meditation practice. What I do hear is from all of us is a desire to meditate more. It’s hard. Finding  15 quiet minutes in a house where seven people live, two of whom are babies, is nearly impossible when the sun is up. Yet those same meditation interrupters are the best teachers. Being a good parent means regularly putting the needs of your children ahead of your own desires. You desire sleep, but you stay up with a sick child. You desire listening to the radio in the car, but you listen to a Kindermusik CD for the umpteenth time. You want to react to your teen’s anger with equal anger but you don’t, or if you do, you later apologize with sincerity like you’ve not shown in an apology to anyone else. And for these and so many more examples, a fellow Shambhala Buddist once printed up T-shirts with the phrase “Family Is Practice.” One needn’t be Buddhist to understand this.

I would like to say that I am actively raising empathetic children who are growing into compassionate adults who will approach life with mindfulness. As their mother, I question my objectivity to analyze my sons’ qualities. What I do see is three teens (okay, Jules is still 12 ½) who enjoy their younger siblings. They are patient with Leif when he throws tantrums, they play with him in ways that border the worlds of adults and children and which Leif loves, and they pay attention to when he needs something, including a diaper change. All of them hold Lyra like she’s the best bundle of goodness they’ve ever come upon, which she is, but they’ve figured this out on their own. And that means they are considering someone other than themselves. Who knows if they’ll take that out into the world of their adult lives? I don’t, but I hope they do.

No Easy Pieces

I told Max before my last post that again I hadn’t written anything light and funny. “You’re Scandanavian, you can’t help that you keep going back to you inner Kierkegaard.” I don’t know if it’s my heritage or my personality, but I do brood. I’ve been working on this post for several days, contemplating the richness of my personal life and the contentment I see, at this moment, in all my children and my partner. All of this contextualized in the dark events reported last month.

True Confession: I love Facebook. I have issues from time to time with the policies of the company, but as a tool for communication, I embrace the technology. Before Facebook, family and friends rarely saw photos of my kids, as I’m just not efficiently organized enough for printing and mailing hard copies. With Facebook, I have stayed in communication with people who have moved away or I don’t see regularly. I have rediscovered old friends and become better acquainted with people I barely knew from my childhood. I don’t friend everyone and rarely unfriend someone.

When I checked Facebook this morning I found the following post written by someone with whom I went to junior high school:

I have come to the conclusion the only reason there are so many stupid people is that it’s against the law to shoot them!

Besides being profoundly tone deaf to the news, I imagine the person who posted this does not actually wish to shoot, and by implication kill, anyone. I imagine that this person had a frustrating day. Perhaps the traffic was bad getting home from work. Perhaps the cashier at the grocery store was rude. And, yes, perhaps someone did something stupid. I’ve been frustrated on days when things don’t happen as I want them to. Sometimes I can look past it, but other times it can put me in a foul mood. I may yell at the kids to clean the kitchen when asking them would have gotten the same, if not better, results. I withdraw in my own home, wishing to be left alone, which I will categorically tell anyone who tries to talk to me.

I don’t assume this person meant shoot people with limited IQs, such as my daughter. I don’t assume this person meant shoot people who aren’t college educated, such as my parents. I don’t assume this person meant shoot people with high IQs who have learning disabilities, such as two of my sons. I assume this person’s definition of “stupid” in this context was “anyone who prevents me from having what I want when I want it.” We’ve all been there. I imagine the people being called stupid were also not the family or friends of the person who posted. Random acts of kindness are easier given to those we know and love. It is harder for those we don’t know and harder still for those whom we don’t like for whatever reason. If there is transformative power in being kind, I suspect it is even greater when being kind to a stranger or an enemy.

This person’s post provides the perfect illustration of a commonly quoted Buddhist slogan:

Desire is the foundation of aggression.

It also causes me to think of my own language. At times, I speak with words that would convey a violence I don’t intend. For example, I recently said I wanted to pinch Leif’s head off when he was in the throes of a full-blown tantrum. And

My Random Act

I haven’t committed one that is intentional. Perhaps I will stop before speaking and think of what my words mean before I say them. Today is a new day full of promise and opportunity for me to do so. I hope anyone who reads this will consider doing the same. According to the aforementioned study, it may make you happier. I can’t tell you it will change the world, but the effects can ripple beyond you and your day, just as they did for the person whom Max bought a cup of coffee. Maybe acting locally while thinking globally is a placebo. But for most of us, it’s what we have to work with. Just try it.

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We Are All in Newtown

It is mid-December 2012 and in the background of daily life are the impending holidays and the end of the Mayan calendar on December 21, which some people suggest predicts the end of time. Last week, I thought I would write this week about the holidays, celebrating Christmas in all its pagan glory when my children have been raised exclusively as Buddhists. Last week, I finished my weekly Whoopsiepiggle post on Thursday and planned to edit it one more time before posting it the next day. But last Friday, before I had posted, a friend told me of the shooting in Newtown, Connecticut. I didn’t post on Friday. I wondered whether or not to post on Saturday. Would posting, by resuming my weekly routine, help process such an emotionally eviscerating event? Or would holding off on posting show respect for the dead much like a moment of silence? I posted on Saturday and I’m still not sure if that was the better choice.

Mayan calendar or not, it may feel like the end of time has come for the families of the 20 first-graders murdered in their school. The friend who told me of the shooting takes my sixth-grader, Jules, to school each morning with her own first-grade son. After she called, I wanted to back up time to earlier that morning when we were chatting in my driveway while Jules climbed into her Jeep. The air was crisp but not frigid, the matte finish of frost coated the lawn and the sky pinked the horizon. At just past 8 o’clock, it was the beginning of the last hour of life for twenty little children and the adults who tried to protect them.

People die everyday. Approximately 150,000 of them worldwide. In 2000, it was estimated that roughly 1,500 people are murdered each day on our planet. Sometimes these events hit us because the person who dies is someone we know, someone we love dearly and when they pass, it can feel as if something inside us dies too. Other times, strangers die in ways that captivate our sensibilities and make us pause in our otherwise self-absorbed lives. The destruction of the Twin Towers on 9/11/01, the South Asian tsunami in 2004, last year’s tsunami in Japan. We gasp when other humans, particularly those who live most like us, suddenly stop living with little or no warning. If it could happen to them, it could happen to us is the feeling deep inside. Perhaps even relief that it happened to someone else and not to us.

This past year brought an onslaught of mass killings in the U.S. Humans killing other humans whom they didn’t even know for no apparent reason other than insanity. Last February, after a boy in the nearby town of Ravenna, Ohio randomly shot and killed three students, we practiced a lockdown drill at the school where I worked and Jules attends. The community at the private, Waldorf school feels like that of a healthy church community in the way we come together to help out the school and one another. The dogma is the Waldorf pedagogy we have all chosen for our children. I have long had a list of things I would buy the school were I to win the lottery—things like energy efficient doors and windows. After the Ravenna shooting I became acutely aware, as I sat at a desk from which I could see the main doors to the building, that our school was not adequately prepared for an intruder with an assault weapon. My wish list for the school is now very different. Then again, the fact that Sandy Hook elementary was far more prepared was of little consequence when the assailant just shot his way into the building.

A week after the Ravenna shooting, we learned of an Episcopalian school’s headmistress being murdered in her office by a recently fired teacher. They had let him in because they knew him and never suspected his guitar case contained a gun. Working at the K-8 school my son attends is the only job I have ever had where I felt a deep concern for my physical safety. Not because there was anyone I was afraid of but because it is clear that nobody at any of the school shootings this past year thought they were in any danger of inexplicable violence.

What’s Different?

With each mass killing this past year, not only at schools but also a movie theater in Colorado and a Sikh temple in Wisconsin, I observed something as grim as the murders themselves: We as a nation have become desensitized to mass murders committed with alarming efficiency. Until last Friday, I never expected uproar for gun control because I knew, as apparently did the politicians, that it was pointless. I have long had the sinking feeling that we will just live with these crimes in this country, that it is one of the negatives in the cost benefit analysis of living in the richest country in the world. People talk about Canada having a preferred approach to a number of social and criminal issues but I do not know a single American who has moved to Canada in response to American policies.

I wrote in Whoopsiepiggle last week that having children changed me, made me a better person. I was not a bad person before and, if anything, my kids have taught me to be kinder to myself. Losing a child under any circumstance would also change me. Perhaps more deeply than having them in the first place. To lose a child to unspeakable violence, to wonder what your baby’s terrifying last minutes of life were like, and to know that as the parent you were utterly incapable of protecting your child, these things shatter my heart as a distant observer.

That’s the difference.

According to a recent study, mothers who lose a child, even a child out of the home, have a 133% greater chance of dying themselves in the subsequent two years. This horrific event has made many turn inward, go deeper than we did in any of the multiple mass killings of the past year. This time there is much discussion of gun control, access to mental healthcare, and the fact that middle class white men have perpetrated the overwhelming majority of these massacres. These discussions are happening because this crime, even given our gun death saturated news cycles, was too much for us.

I don’t doubt that many people have turned to their faith to help them process this event. There’s nothing to make sense of, the killing of 20 innocent children and their adult educators is insane. My faith does not ascribe spiritual causation to events whether they are good or bad. But I have learned through my practice to observe our behavior when things are very difficult. Particularly at times of grief can our hearts become softer, more open, vulnerable and compassionate. It is a tenderness we would do well to cultivate, to carry into our interactions for as long as possible.

In the days following 9/11, the French paper, Le Monde ran the headline, “We Are All Americans.” As a nation and perhaps beyond our borders I see many people grieving as if we are all family with the people of Newtown, Connecticut. A friend posted on her Facebook wall yesterday: “I have to stop watching television. All I’ve been doing is crying.” Another person responded that she too had been crying and her TV was off.

Why?

An longtime friend who now lives in California stayed with us over the weekend. Also Buddhist, she and I briefly discussed that in this or any situation the question of why is irrelevant. Whatever has happened has happened, so now what?

But the soul cries why. Why were these children born if only to be taken? Why did the killer pick that day, that school, that classroom, those children? Why had the killer not been treated, hospitalized, or jailed? If I were a parent of one of the murdered children, I imagine I’d ask myself why I hadn’t kept the child home that day.

Questions of why only lead to despair because in the end, we have no control over what happened. The dead are gone, many now buried. And nothing will bring them back. We will all die and soon, in relative terms. For most of us, 99.9% of the world’s population will not notice our passing. And soon thereafter, within a few decades, we will be forgotten in the vast darkness of time.

What will we do with the very limited time we have? We will cry for those little children as surely as we cry for their families whose pain breaks us open and for the moment brings us together with people we will never know. We will try to sustain the compassion we feel for one another in the shadow of this tragedy because right now, in this holiday season when shopping seems so hollow, when the fiscal cliff now seems inconsequential, our perceptions of “us and them” are momentarily suspended while we grieve for the dead in Newtown, Connecticut.

And maybe, before we re-swaddle our conscious minds with our busy lives, we will finally address the complex issues of these now common massacres. Twenty children were heinously sacrificed. It need not have been in vain.

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What We Keep

Max and I have a new fantasy for disposing of our extra furniture and belongings: buy a small house in Charlevoix, Michigan and haul it up there. We’ve picked out the house, it’s right next door to my step-mom and her husband and where we occasionally stay we visit. It’s small enough to be easily maintained and the kids can roll right over to Grandma’s in the mornings when we are there.

In our minds, we have already moved in. We know where the extra dressers will go, the three double beds we don’t need, the antique shelves, the 1950s dinette, the extra dishes, cookware and linens. Don’t forget the decorative objects, original paintings, coffee table books. All fit perfectly in our little pied-à-terre.

Never mind that the cottage is not for sale. Nor that we couldn’t afford it if it were. Nor that we already own three homes. And what about the fact that not only does the house we live in have a three car attached garage, there is an outbuilding that is the equivalent of a four car garage? All full, yet only the mini-van gets parked inside.

“We live like hoarders!” I plaintively whined to Max this past weekend as I listed the rooms stacked with boxes. We’ve been in the house just over a year and, as the demands of our daily lives overtook the formerly pressing need to unpack, we became oblivious to the boxes. So much so that now we blithefully trot the goatpaths between the walls-o’-cardboard. Yikes! We really are hoarders!

For every improvement, there is an attendant cost.

That sounds like a quote from someone historical, but it’s just me (I wish I could say, an equal and opposite cost, because it sounds catchier. But that’s generally not the case). I first struck on this notion when I was an undergrad and at the time was pondering computer software. Computers were beginning to make automatic corrections and, as someone who began writing in the days of electric typewriters, I wondered if grammar and spelling would degrade in younger generations. Looking at the writing of my teenaged sons, I think it has. Hugo especially has pervasive capitalization errors because he relies on auto correct to clean it up for him. Sometimes it does and sometimes it does not.

The word “cost” sounds negative and sometimes it is.

Take for example, buying a house. You might improve your financial situation by paying for a mortgage, in sense paying yourself, rather than giving your money to a landlord. However, as the homeowner, you now must do the yard work and maintenance on the house. Maybe you love yard work and maintenance, so that’s great for you. But all homeowners have had those times when things unexpectedly break and you, not your landlord since you don’t have one, have to replace them.

When I divorced, I got the house. The same month I took sole possession the water heater broke. A few weeks later the dehumidifier died. Followed in short order by the refrigerator, the washer, the dryer, the oven and the garage door opener. I became well acquainted with Alan, a sales clerk in the appliance section at Home Depot.

I believed then as I do now that I had greater security for my children and myself by owning my home. But without Home Depot’s wonderful 12 months-same-as-cash programs, I would not have been able to replace everything that broke in a timely fashion. Even with interest free financing, my money was pinched making those payments.

In other cases, improvements may only seem like they have an attendant cost but as those cute t-shirts say, it’s all good.

In the first few months after I had Claude, my first child, it was impossible to get anywhere on time. Born in January, I’d feed and burp him, change his diaper and dress him in his little snowsuit. I’d put on my coat and as I picked him up to walk out the door, he’d poop. I’d take off my coat, his snowsuit, his pants and diaper, clean his butt and then rewind. Or he’d spit a belly’s worth of milk down his front, causing another adventure in tiny clothing. It was then that I realized I had lived a completely self-absorb existence pre-baby.

Six weeks before Claude’s third birthday, I had my second baby. I was better at getting a baby out the door and would often have wee Hugo bundled into his car seat before suiting Claude up for the cold. Still, anything that involved getting in and out of the car overwhelmed me. There is no dashing into a store when you have two small children. The stroller has to come out, the baby goes in the stroller and then the toddler comes out. Hopefully you don’t leave the diaper bag behind, because you most certainly will need it if you do. In those days when I would see a woman pushing a stroller with one baby in it and no other children around, I would think she doesn’t know how easy she has it.

Now I have five, count them, five children! The Episcopalian Church across the street from our home has a community dinner each Wednesday evening. We are not members of the church, but have many friends who are. One in particular has made it a point to invite us to come each week and who could resist? I don’t have to plan a dinner, the boys don’t have to do the dishes and we get to visit with friends. Best of all, the food is delicious!

“You know,” I said to Hugo and Jules as we walked over to the church last week, “there are five of us here right now, but it doesn’t feel like so many people.” I was holding Lyra and Hugo had Leif’s hand. Max had gone to visit his elderly uncle that evening.

“What are you talking about?” asked Hugo.

“Well, if you had told me when I was a young woman that one day I would have five children, I would have imagined some crazy scene, like kids running around all over the place. But I’m walking with four of you right now and it’s not crazy—it’s just us, you know what I mean?”

“Yeah, well, we’re each other’s company, we’re your peeps,” said Hugo.

Granted, I don’t have five little kids, which would be far more chaotic than having a young man (Hugo) and an adolescent (Jules) help me with the two peanuts. As my mother’s only child, growing up was very different for me than it is for my own children. I spent most evenings by myself while my mother worked in bars and my stepfather traveled for his job. I cannot imagine having only one child. Or as Lena Olin’s character says about small families in the film The Polish Wedding, “You wouldn’t bake just two cookies, would you?”

I greatly appreciate the fact that the human population is growing at a rate many find alarming and I fail big time on the reduce, reuse, recycle mantra in terms of putting so many humans on the planet. But I am a better person for having become a mother. Perhaps only one or two would have done the trick. But I had five. And I have learned from my five kids both that I am not the center of the universe but it is paramount that I take good care of myself in order to take good care of them. Children have humbled me and taught me how to hold my seat as the boss. They keep me grounded by reminding me who I am while pushing me to be my very best and to reach, reach, reach. Sound familiar? That’s because it’s also how I raise them—it’s a symbiotic gig. My kids bust my butt better and more often than anyone else. And they believe in me more than most do or will. Claude and Hugo regularly tell me to publish my book. That they believe in my writing makes me want to be a better writer. Every day.

Sometimes it’s a no-brainer that what you lose is better off lost.

Leaving a soul-sapping marriage is always an improvement, no matter how difficult it is to do so.

For years, I complained about what I did not like about my marriage. Then one day I did something different: I declared what I needed. I needed a partner who showed up, both physically and emotionally, for the boys and me. I needed sovereignty and for my partner to be a real partner. To support my ambitions just as I supported his; to invest in our children just as I had done; to build a life that on most days meant being together was better, easier even, than being single. And I was no longer willing to accept IOUs for changes in our relationship. That bank had gone belly up.

I got what I wanted, but not where I thought I’d find it. My demands were too high for my ex-husband, which is neither his fault nor mine. We found the meaning of “irreconcilable differences,” the cause often cited in newsworthy divorces. Our divorce was not newsworthy, but rather followed a predictable pattern to the bitter end, routinely confirming just how irreconcilable our differences really were.

I got what I wanted when, a year later, I fell in love with my friend, Max. He hit everything on my list. I fell in love with him a second time when many months later, he stepped into the lives of my boys and filled a void. Not by buying them things or trying to impress them. But simply by showing up. Even when it is inconvenient, even for situations that simply aren’t fun.

A New Life in a New House

Max had just built a three-story addition onto his home in a northeastern suburb of Cleveland when we converted from friends to lovers. It had been the home of Max’s father, who had died almost ten years earlier. Many of his father’s things—furniture, art, collectibles, papers—were still there.  Before returning to Ohio and his father’s house, Max had lived for more than a decade in other states and had packed a household of his own into the 1930s bungalow. While the older parts of the house were as full as a funky antique shop, the rooms in the new addition were invitingly open. A new life accepted the invitation.

My house is in Akron where, in 2003, my children and I solidly rooted after years of moving. When my ex-husband moved away, he took with him many family heirlooms he’d inherited including three dining room tables and two hutches. Beautiful as they were, it was a relief to see them go for they made me feel like the curator in a museum. If the house felt a little empty, or refreshingly open, it quickly refilled with furniture like water pouring into a capsized boat. One friend gave me a couch; another gave me dressers. Max himself brought over a leather wing-backed chair, a cabinet and tables. Soon my 1909 four square was as full as it had ever been.

For three years, we happily lived in two homes. When we had our first baby together, Max decidedly began staying most weeknights at my house and on the weekends we pretended his house was our pied-à-terre. His two cats grew terribly fat and lonely.

I don’t recall when we started looking for another house. We certainly didn’t rush and had we not had the world’s most patient realtor (www.barbsnyder.com), we might never have bought a third home. Time and again, a house would look appealing online and appalling in person. We soon realized that as much as modern floor plans have to offer, we prefer old construction. Solid doors, brass handles, curves in the plaster, quirks in the design, windows wherever possible. We’d go months without looking at any houses.

And then, like at the end of Miracle on 34th Street when child actress Natalie Wood sees the house she’s been dreaming of and makes her mother and (soon to be) stepfather stop and go inside with her where they find Santa’s cane in the corner of a room, we knew immediately when we had found our home. All other houses we had dashed through, knowing instantly that they were not what we wanted. In the house that was to become ours, we went from floor to floor, room to room, squeezing hands, whispering, “Look at this.” Because he was the most resistant to moving, we had taken Jules with us whenever we looked at houses, including that day. “Please buy this house!” he told us. That evening, Max made an offer. It was quickly accepted.

It took us six months to fully move in. First, we emptied and rented Max’s house. Then we did the same with mine. Things we had long housed were discarded. For Max, that meant many of his father’s things. What had once been hard became easy, as we built our future instead of holding onto another’s past.

But like archaeology, it has happened in layers. Since moving in, we have had garage sales, taken a truckload of things to Habitat for Humanity, sent boxes of art to Max’s sisters in Colorado, sold things in an auction, given more to the American Cancer Society’s local Discovery Shop. And the back garage is filled with furniture that doesn’t fit in the new house. Built in 1940, it calls for a mid-century aesthetic and we both came from Arts and Crafts homes. Our Arts and Crafts pieces of furniture look incongruous in the new home. We have loved them, but they don’t belong here.

I only have one piece I’ve yet to let go of (yes, other than books of mine waiting for shelves to be built, the rest really is Max’s stuff). An antique child’s armoir-dresser built of dark wood in Mission style. It was in my room until I was in high school. Years ago, my mother called and said she was going to sell it unless I wanted to pick it up. Hugo used it for several years, but doesn’t fit in any of our current rooms. Corralled in the back garage with the other outcasts, a man spied it at our last garage sale and insisted on buying it. He kept coming back to the house to offer me more money until I cried. I just wasn’t ready to let it go. Not yet. Soon. Maybe.

p.s. Max reminds me, and wants me to inform you, that we have more rooms without goatpaths (kitchen, dining room, living room and four bedrooms) than with (our two offices and the basement). 

p.p.s. The basement is really big.

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Learning About Lyra

“Is there a vagina?” I immediately asked the midwife.

After a summer of crop-killing drought, it rain fell the day my last child was born. For the first time in two months, we turned off the air conditioning and opened our windows and a soft breeze cleared out the re-circulated air. Sitting on my side of the bed, I looked out the screen door to our veranda while I waited for each contraction, watching the soft rain, breathing in the fragrant storm. When I began to push, just a couple of hours after hard labor had begun, the storm seemed to move with me. Still falling in straight lines, the rain grew heavy and splattered noisily on the heat-hardened ground. Fifteen minutes later the baby emerged, the rain stopped and, as unbelievable as it sounds, the clouds parted just enough for a shaft of sunlight to settle onto the soaked lawn.

My fifth child is my first daughter. Or so the doctors had told me during a level II ultrasound eighteen weeks into my pregnancy. But reading an ultrasound is a subjective art and there are no guarantees of the analysis. We knew this.

Lyra on her fifth day

Lyra on her fifth day

Because I was 46, I underwent many prenatal tests while expecting my last child. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when, in my last trimester, I had a fetal echocardiogram, the cardiologist said everything looked beautiful and beautiful is better than good. Having decided we would not terminate a pregnancy if the fetus had Down syndrome, my partner and I passed on an amniocentesis. More importantly, I felt certain I would lose the baby if I had an amnio. Like me, my grandma, who mothered me unlike anyone else, had four boys. Her only daughter died at birth because of the Rh blood factor. Grandma had negative blood and, like her first child, her baby girl’s blood was positive. At the birth of her first child, a boy, Grandma’s blood created antibodies against his positive blood type, which remained in her body and, later, killed her daughter. I, too, have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy for this. After each of my babies’ births, I was given a RhoGam shot that prevented my body from building antibodies to positive blood.

Grandma kept trying for a daughter, even when my grandfather did not agree, but she only had boys. When I learned my fifth child was female, I believed an amniocentesis would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt very strongly about this connection. I still do.

Bluish and slippery when the midwife handed her to me, the baby screamed long and loudly. Her eyes remained closed as I began nursing her. Her skin pinked up, her umbilical cord was cut and our girl, whom we named Lyra, was perfect. When she finally opened her eyes, I mentioned that they looked “Downsy.” Then I saw the bulk of skin on the back of her neck, and then the ghostly pallor of her pupils. I mentioned these things to the midwife, who had listened to Lyra’s heart the moment she was born, and she told us she’d fully examine the baby in a bit, to just hold her for a while. In the middle of our bed, Lyra’s father and one of her brothers huddled with me around our new child. The midwife knew. So did my friend who was there to photograph the birth.

My daughter has Down syndrome. And, when she was born, she was blind. The murky white of her pupils, the color of breast milk in a glass bottle, was due to bi-lateral cataracts. Leaving me to revisit what I thought I desired in a daughter, what it is to have Down syndrome and, ultimately, what it means to be fully human.

The first weeks of Lyra’s life whirled past us as we dashed to one appointment after another, first verifying her Down syndrome (DS), that she had no life threatening conditions (as can often be the case with babies with DS), and, most urgently, taking care of the cataracts in her eyes. Once her eyes were surgically cleared, we had an impending presidential election to absorb so much of our attention—along with daily life in a family of seven.

We made ourselves busy. Too busy to really take in what it means to have a child with Down syndrome. Too busy to spend time with uncomfortable questions as they slither up from the cracks of my mind. On the day Lyra was born, the midwife wisely counseled us to stay off of the computer for a while, to just spend time with our daughter. But just as important was to find support and accurate information as to what a diagnosis of Down syndrome means today in the United States.

I wish I had worried less about who my daughter would become and enjoyed the baby she was. ~ a mother, quoted in Babies with Down Syndrome

The test for Down syndrome is a yes-no test. Your child either has an extra 21st chromosome or she doesn’t and the results are back in as early as 48 hours. Lyra was born at home on a Tuesday. On Friday, we received the call confirming her diagnosis. But no test can tell you the severity of your child’s Down syndrome. You just have to wait and see.

There are, however, varieties of Down syndrome, including something called Mosaic Down syndrome in which not all of the cells contain the extra 21st chromosome. To learn what type of DS a child has requires a karyotype test, for which it takes many weeks to receive the results. Even though about 95% of children with DS have Nondisjunction Trisomy 21karyotypeTrisomy 21, or an extra chromosome in all of their cells, for nearly three months, I held on to the odds that Lyra was one of the 5% with Mosaic DS. She has few markers, I reasoned with myself, she’s developing beautifully and while there are no guarantees that a child with Mosaic DS will have milder symptoms, fewer medical problems or an easier life, I wanted it to be so.  I wanted it because maybe, just maybe, Lyra would have fewer struggles. And, yes, be more typical.

Which is just magical thinking.

Magical Thinking 

In a healthy mind, magical thinking can help us cope with something very difficult. In 2005, Joan Didion published her memoir, The Year of Magical Thinking, about her life in the months after her husband died suddenly of a heart attack. In essence the first three stages of grief on the Kübler-Ross model—denial, anger, and bargaining—all represent an element of magical thinking. The last two of the five stages, depression and acceptance, strike me as the points at which reality sets in.

Oldest & Youngest: Claude and Lyra

Oldest & Youngest: Claude and Lyra

Did we grieve because Lyra has Down syndrome? I know I did. But not all the time. Max immediately saw her as perfect and has continued to do so. The constant refrain from all of her brothers was and is, She’s so dang cute! Mostly, I enjoyed her for the baby she was, sweet and easy to hold, but I cannot help but wonder, as a child and adult, who she will become. At three months old, she only weighed 9lbs. 12 oz., which is less than two of my boys weighed at birth. She didn’t hold her head up as well as they did at three months due to hypotonia, or low muscle tone, which is a common characteristic of Down syndrome. But she remained in the range of normal development, even when compared to a typically developing baby her entire first year.

I have heard many people with Down syndrome children speak of uncanny coincidences, odd and, yes, magical things that occur with and around their children. Martha Beck wrote an entire book on it, Expecting Adam. When word got out that Lyra has DS, many friends recommended the book and one gave me a copy. Beck and her husband were in PhD programs at Harvard when they discovered they were pregnant with their son Adam, who has Down syndrome. Odd things happen throughout the pregnancy that Beck ultimately decides are very spiritual in nature, perhaps the work of angels or other spiritual beings.

On a warm day in late October when I had just finished reading Expecting Adam, I was overwhelmed with my day’s schedule, our clutter-filled house, the children needing to be reminded of things like, shut the door when you come in. Where are my angels? I have a child with Down syndrome too! I thought petulantly. That evening, I took two-month-old Lyra and went to a Down syndrome support group meeting, leaving my two-year-old son, Leif at home with his older brothers. As soon as I pulled into the parking lot where the meeting was held, my son Hugo called me.

“I don’t know what happened,” he said, fear in his voice.

“What?” I asked.

“Well, I was in the living room and Jules was in the kitchen,” he said.

“Yeah, so?” I asked.

“Leif had been in the basement, at least I thought he was in the basement, watching a movie,” Hugo continued.

“Okay, what is it?” I asked holding my cell phone ever tighter in my right hand.

“Well, I don’t know exactly what happened,” said Hugo and I wanted him shake him.

“What the hell happened?” I yelled.

“You don’t have to yell!” Hugo snapped back. “Leif must have gone out back through the porch and, uh, somehow the gate wasn’t locked because, well, this lady came to the door with Leif. She said he was on the street.”

We live on the busiest street in a small city. There are four lanes of traffic in front of our house. Across the street is a large church that has a playground where we often take Leif. A few days later, I learned the entire story. Leif had started to cross the street with no regard to traffic. A woman driving down the street saw a man, who was walking on the sidewalk, stop and pull Leif back onto the sidewalk. And then the man continued on his way. When the woman in her car saw that Leif didn’t belong to the man who’d pulled him to safety, she parked her car, got out, and went up to our little boy. She asked him where he lived and brought him home. Later, the woman told a friend the story. The friend knows us and called me.

I read the paper every day. Bad things happen all the time. Two strangers likely saved my son’s life. Was it the work of angels? Fate? Or mere coincidence? I can’t say. But I hung up the phone and thought of my earlier complaint. “I’m sorry, I take it all back! We’re good! Thank you!” I said outloud.

Max and I both believed we could have a child with special needs if we were audacious enough to try for a second baby together. At least, we occasionally mentioned it to each other in the year after we had Leif, who was born without any diagnoses when we were 44 years old. I wondered if trying again was hubristic, was I daring the gods, did I think I was somehow superior to the odds of having a baby with an extra chromosome, which were high? No, I did not. In fact, I quietly believed the odds were more than high. I believed they were certain.

Clearly many would see this as an unacceptable outcome because more than half the women in the U.S. who learn they are carrying a fetus with Down syndrome elect to terminate the pregnancy. Others, like Martha Beck, may see having a child with Ds as a gift, a reward for parents who might feel chosen by a higher power. To me, it’s neither.

As with all my children before I conceived them, I felt that there was a child out there, the last one, waiting to come to our family, and that it was my girl. Max would also on occasion say things like, “It would be nice for Leif to have a sibling close to his age; he’ll be so young when Jules goes off to college.”

And so, when Leif was just two months shy of his second birthday, we bought an ovulation kit and Lyra was conceived the first month we used it. On Thanksgiving Day.

But What Can We Expect?

On Lyra’s second day of life, we had a long discussion with a genetic therapist. She took her time with us as we began to learn that the expectations for children with Down syndrome are radically different than they were when we were growing up. For example, consider this fact: When I graduated from high school in 1983, the life expectancy for someone with DS was 25. Now it is 60 and increasing.

Today, children with Down syndrome benefit from early interventions including speech, physical and occupational therapies. There are highly organized support groups nationwide including, in Northeast Ohio, The Upside of Downs, a group who has been tremendously helpful to us from the moment we first contacted them. There are also national organizations including the National Down Syndrome Congress whose video, “More Alike than Different,” explodes old notions of what adults with DS are like and what they can do. As does the documentary movie, Monica and David, about a married couple, who both have DS.

The success stories are encouraging and truly heart warming—I easily become weepy watching them. But like buying a new car and suddenly seeing everywhere the same car, in the same color, it now seems that I see children and adults with Down syndrome all the time, not just at functions for families in the DS community, but as I am out in daily life. And clearly not all of them function as highly as the young people in the aforementioned videos.

The truth is none of us know what our journey will be with any of our children, whether or not they have Down syndrome. I have two sons with severe dyslexia who have required significant interventions. I have one son who turns to gold anything he sets his mind to—academics, sports, music, visual art. And it is that son who regularly commandeers immense amounts of my parenting time, attention and certainly energy. I could not have predicted any of these journeys with my oldest three sons when they were babies in my arms. I love none of them any more or any less for who they have become. Rather, much of the joy in having a large family is getting to watch both how similar and how different each child is from the others.

With Lyra we are immediately aware that we have a unique journey. There is a helpful analogy often told in the Down’s community about giving birth to a baby with Down syndrome. It’s as though you were preparing for a trip to Italy—you found your dates, purchased the items you thought you needed. Perhaps you’ve been to Italy before and are looking forward to returning. Or maybe it is your first time, but friends of yours who have been to Italy before tell you what to expect, how to plan for your trip. The big day comes, you board a plane and make the long, tiring flight to Italy. But when you disembark, you find yourself in Holland.

My view of Lyra while hiking with her in the baby carrier on my chest. December 6, 2012

My view of Lyra while hiking with her in the baby carrier on my chest. December 6, 2012

We arrived in Holland with Lyra, because we quickly knew she had Down syndrome. And like customs officials at international airports, in the first year of her life, we met with an onslaught of medical officials as we worked to make sense of where we were.  Even after more than a year of familiarizing ourselves with our situation, we don’t yet know on which roads our journey with Lyra will take us or what cities we will end up in. Only as she grows, and we learn how having that extra chromosome specifically affects Lyra, will we be given our unique map to follow in this territory that in one short year was no longer felt foreign.

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Lists and Real Life

“Knife fight or sex are the only two acceptable answers, remember?” asked Max. I had just told him when people asked me about the stitches on my face, I was going to say I’d been in a car accident. But that excuse isn’t on the list.

I have various lists I keep in my head. Not like David Lettermen who counts down his lists following Mark Twain’s method of going from the odd to the outlandish (read the list of what people will bet on in Twain’s short story, “The Jumping Frog of Calaveras County” and you’ll see what I mean). My first list, started in my childhood, was promises for when I became an adult. Sadly, I didn’t write that list down and have forgotten much of it save for three items:

  1. Buy good Halloween candy. I think this is something of a universal promise of children to their adult selves yet amazingly many adults forget what it was like to get those generic nougat candies wrapped in orange and black wax paper. Sadly, we don’t get trick or treaters at our new home, not a one. Last year, the first year we were here, our teenagers who had stayed home to hand out the candy were the delighted beneficiaries of my candy largesse.
  2. Do all you can to help your kids’ acne go away. Again, a no brainer if, like me, you were ever a teen with acne. My ex-husband didn’t ever have acne, which is perhaps why he told the court that I was inappropriately spending money on non-essential medicine when I took Claude to the dermatologist when he was fifteen.  Claude’s skin had erupted like a painful field of spring dandelions and he could not shave his face. It seems the judge had acne as a teen too because he found Claude’s expenses to be entirely reasonable.
  3. Buy high quality, soft toilet paper. My mother, who was a cocktail waitress, stole the commercial POM brand toilet paper from the bars she worked in. You could use POM teepee to scrub floors it’s so rough. Charmin or Cottonelle are the only brands allowed in my house. (Yes, it makes us fall short yet again on the reduce, reuse, recycle mantra because these brands don’t use post-consumer contents, but this is a promise I am keeping)

“Knife fight or sex” fall under the list of Rules for Life, as the only responses to questions regarding physical injury in order to avoid going into the mundane details of what really happened. Saying the stitches on my face were caused by sex would only encourage further questioning. A knife fight, however, holds some water for the three incisions on the right side of my face found just under my eyebrow, below my nostril and on my cheek. The dark blue sutures add to the effect. Little Leif asked if he could kiss my boo-boos when he first saw them, but when he leaned in and looked closer, he changed his mind and just kissed my mouth instead. Fair enough.

The knife-wielding assailant was a plastic surgeon and the scene was a full-blown surgical suite at a nearby hospital this past Monday. It seemed overkill to me and I said so. I was told that insurance providers require it nowadays (and if you want to know the real reason why American health care is more expensive, with costs rising faster, than in any other first world country, look no further than insurance companies, but I digress). If I had known I was going to be required to wear a hospital gown, I might have shaved my legs for the occasion (I stopped some weeks ago when we went from skirt to pants weather).

Overkill indeed. I had removed from my face what the paperwork described as “lesions.” Years ago, I called these same spots beauty marks as I felt they were not unattractive, think of the character Peppy Miller being given a signature beauty mark above her lip in the film The Artist, which helped make her a star. But with time, and especially pregnancy, my beauty marks grew. And grew. Morphing into witches’ moles, I could have cackled, “Candy, my pretty?” at Halloween had any little beggars come to our door. When pregnant with Lyra, these grotesque growths also became suspiciously itchy. And so, after consulting with my doctor, I decided to trade in lesions for scars.

You find out how good your insurance is when you file a claim. The same it seems is true with Rules for Life. I wish just one person would play along with me. Instead, many friends and acquaintances have looked at me with a mix of horror and sincere concern and ask What happened? Or, Are you okay? And when I say, as I have many times this week, Knife fight! They say, come on, really, Were you in a car accident? (What did I tell you, Max?)

I like the idea of being mysterious, but I have lived a relatively filter free life. It’s not something I chose but rather, like Turret’s syndrome, what was in my mind used to flow unencumbered down the path to my mouth and out a wide delta of public speech. An insanely acrimonious divorce helped me cultivate a modicum of privacy and I no longer tell anyone everything. But when friends are clearly worried by my gruesome appearance, I cannot toss it off with humor. I cave and tell them I had bits taken off.

You may ask, Why not hide the evidence under Band Aids?  Sure, there’d be some questions, but perhaps not as many. First of all, the surgeon said not to, but I’m hardly a model patient and have bucked medical recommendations aplenty. I’ll tell you the real reason: because I know what I like and how I like to look. And I’m mighty comfortable in my skin and don’t need to hide my cosmetic imperfections. That is now. Consider this quote:

Those “precious middle years—those beautiful years when a man finally understands what he is about to lose and is eager to make the most of it.”

I read this line in the novel Suite Française while waiting in pre-op for my “surgery.” Published in French in 2004 and translated to English in 2006, it was written in the early 1940s by Irène Némirosvsky and left with her daughter when the Germans sent the author to Auschwitz in 1942, where she died soon thereafter at age 39. Only in the 1990s did her daughter realize it was a novel and not a collection of handwritten notes. The history of this manuscript and its author is as compelling as the novel itself, which is about the German occupation of France during World War II. For more see: Irène Némirovsky – Wikipedia, the free encyclopedia

Most days, being middle aged feels like a gift. Yes, I feel osteoarthritis in my right knee when the weather turns cold and dry as it has this past month. Yes, there is only so much good lotions can do for aging skin. But I also see that I’ve likely lived more years than I have years left to live and perhaps therein lies liberation. I’ve already had eight more years on this planet than Irène Némirosvsky, how have I made the most of it? I ask myself this almost everyday. The quotidian—I have loved my children and by all accounts raised them well—is that enough for me? It is important, but the fact that I beg the question reveals the answer. No, it is not. So far mothering my children has been the most important work of my life and perhaps it always will be. But it is not enough.

Not everyone who is lucky enough to live a long life becomes introspective, philosophical or spiritual (I know several choice examples of those who haven’t and I’m sure you do too), but many do. A good part of that comes with letting go. I will never look as good as I did when I was nineteen. But at nineteen I didn’t like the way I looked and now, at nearly 47, I do. At nineteen, you would never have found me in public with stitches all over my face—not if I could help it. But at 46, I not only carry on, I rather enjoy the way the grocery store cashiers struggle with the impulse to stare at my wounds. (A wee obnoxious, I know)

Still to this day women are steeped in a societal stew that encourages us to be the objects of desire. I know I was. But such an object has no real desire of its own and truly many women still struggle to know what it is they want. I know I have. Many women “d’un certain âge,” as the French put it, become lost when they can no longer trade in on their looks. And who can blame them? Consider the film Searching for Debra Winger, which directly addresses the fact that few Hollywood actresses, regardless of talent, continue to get good roles after the age of 40. (Searching for Debra Winger – Movie Trailer – YouTube)

At the top of the Rules of Life is: Don’t let someone else give you your rules to live by. That’s not as easy as it sounds and it certainly wasn’t always the case. It took me over 40 years to shrug off the rules for womanly living complicit with keeping me from following my life’s desires. Even though I studied French feminism in college, even though I had a subscription to Ms. Magazine early on, even though in my 20s I intellectually knew the very points I am making right now in this post. At 41, I realized what I was going to lose and woke up to make the most of it. The choices I made as a result were scary at the time. But I saw that death without living was far scarier and a very real possiblity. It happens all the time.

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(Over the River and through the Woods to Grandmother’s House We Go) x 2.

Reduce, Reuse, Recycle.

We blew the first rule of green living. We try to live simply, but with seven people in this family,  it’s not so simple. Our new Toyota Sienna, purchased when the cost of fixing the old Sienna was greater than its value by a couple thousand dollars, can theoretically transport eight passengers, all seat-belted.

Figure two adults in the front seats. As my two oldest sons are now 6’2” and 6’ tall, four of us fit the physical description of “adult.”

The two captain’s seats in the second row are each dedicated to a car seat—one for two-year-old Leif and the other for this year’s newest member, Lyra. The middle seat in the second row, which is almost as narrow as a coach seat on a commercial airlines, had to be removed in order to access the back row of seats.

The back row, with the least amount of leg room possible as the middle seats have to be pushed all the way back to accommodate the toddler and infant car seats, might work if we had children under ten years of age, but note the heights mentioned above. Also, in this family, our height is all leg. Hugo and I have 32” inseams, Claude’s is 34”.

Lily & Hoover, ready to roll

In the very back, where the families in the Sienna ads store their luggage, we have a folded down stroller, which we very much will use, and two Shelties. Those are dogs that look like little collies and luckily like lying together in close quarters.

Where to put the turkey? The small suitcases of clothing? The diapers? The boys’ backpacks? My laptop? So much for simple living.

We departed  in two vehicles on two different days.

I left yesterday in the Sienna with Jules and the babies, the dogs, the turkey and all that these beings needed. Max is leaving shortly in his Camry with Hugo and will grab Claude in Ann Arbor on his way up north to Grandma’s house in Charlevoix. Until the kids drive on their own to Grandma’s, I don’t see how we will be able to do it any differently.

We are a modern family.

Grandma is my stepmom. Grandpa is her husband but not my dad. My dad and stepmom, who married when I was three, divorced in the early 90s after Dad had moved to Arizona in 1990. My stepmom never joined him in Arizona and he never returned to Michigan. Fulfilling the cliché that is life, Dad met another woman with children of her own and eventually seemed to forget about us. My stepmom never did and she has been the primary grandparent of my boys’ lives until I met Max through whom they have gained a second set of grandparents. Even before Max and I began producing blonde babies of our own, Max’s mom claimed my three boys as full members, with all privileges, of her grand-brood.

Every time I’ve had a baby, my stepmom was soon there to take care of us for as long as she could stay. As soon as they were old enough, my boys began spending many weeks each summer with Grandma and Grandpa in northern Michigan,  their house just a block from sandy Michigan Beach on Lake Michigan. And we come up every other Thanksgiving for Grandma’s holiday dinner. Her herbed rolls, made from scratch and cooked in loads of butter, are worth every gram of fat. I’ve never mastered her herb rolls and I’ve told Jules, who began baking breads this fall, to pay close attention tomorrow.

For years I have supplied the turkey, fresh-killed on the farm for which I host a co-op, which makes me sound like one of those über-mom-bloggers, but the way I host it is pretty lazy. All I do is reveal to the people in the co-op the code to my garage where I keep a refrigerator for the weekly deliveries. The members take turns (in alphabetical order) driving each Saturday to pick up the orders and bring them to the fridge in my garage. As a result, my food is delivered to my home every week.

This year’s turkey was executed and sealed in a plastic bag on Monday and delivered to my garage fridge that evening. I popped him in the Playmate cooler before we left yesterday and later today I will brine the bird in the same cooler. Playmates are the perfect size for brining a turkey and with a fresh-killed bird brining is, in my opinion, necessary.

When you buy your meat straight from the farmer who raised it, you inevitably learn a thing or two that you won’t pick up with your frozen Butterball. For example, meat must age in order to be edibly tender. We’ve all heard of aged beef, right? What that means is not some secret preparation, like the Kobe beef cattle who get massaged in life. Aging means a little decomposition. My fresh Tom hasn’t aged, but the brining will meet the requirements by helping break down his tougher connective tissues. Meanwhile, because he’s never been frozen, he’s not full of water. Nor chemicals or drugs because he’s also organic.

Grandma & Lyra

Which I guess gets to my point—know what is real and what really is. Your meat was an animal with a body who enjoyed being alive but I enjoy eating meat more than letting some animals continue to enjoy life. I don’t eat animals from factory farms when I can help it. Factory farm animals didn’t enjoy life as much as my organic turkey, though I’m sure they didn’t want to die for someone’s meal. I am thankful for our food, the people who grew it and the creatures who died so we could eat them. If it sounds ecumenical, it should.

That your blood relatives are genetically related is real. But real family are the people who show up, regardless of what you call them—mom, friend, brother, neighbor. Some of us are lucky to find family in our relatives. Some of us have to look beyond genetics to find our families. And my boys and I know the difference. We are all eager to get over the river and through the woods to my stepmom’s, and their very real grandma’s, house whenever we can.

When we arrived at 11:30 last night, there was a pot of split pea & ham soup waiting for us on the stove and bread baking in the oven.

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Getting to Goals

One reason why I started this blog was to give myself deadlines. I didn’t plot out goals when I began, but I see now that posting once a week, at minimum, is my goal. I got that memo last week when I did not post and felt like my boss should write me up.

Who’s my boss? You might ask. She’s a severe taskmaster named Helga. She lives inside my head and is always ready with a pen and a long pad of legal paper, the yellow kind, to list my mistakes in grand detail. Her hair is wound up tightly in a French twist and her glasses perch in the middle of her nose so that she can look over them and glare at me, which she does often. Come to think of it, Helga looks quite a bit like me—only thinner and perpetually wearing suits (usually slate-grey wool flannel, pencil skirt ending just below the knees, silk blouse with elongated collar points).

We have a love-hate relationship, Helga and me. Not easily amused, she makes me write and miserable when I don’t.

Ah, but last week. My dedicated writing days are Tuesdays, Wednesdays and Thursdays–the days when two-year-old Leif goes to daycare. But, I tell Helga, last week was not any old week. There was the election and anxiety kept me up much of Monday night. A week later, I cannot recapture that heart-thudding anxiety, which was so real and is now literally unimaginable, though factually I know it was there. Big events will do that—wedding preparations, a set of final exams, even Christmas—all truck in anxiety in advance of their arrival. Born, I imagine, out of the desire to control something that is never controllable. I know others were feeling the same early last week, because so many (of all political persuasions) were posting it on Facebook.

Feeling groovy after finishing a four hour shift of GOTV on Election Day.

Tuesday was, of course, Election Day. Akron Public Schools are closed when we have elections because many of the schools are polling locations. Currently, Hugo is my only child in an APS school and I signed him up to work Get Out The Vote (GOTV) with me. His only complaint was that we had to be at the Democratic Headquarters at nine a.m. Four years ago, when he was eleven, Hugo walked to the Obama headquarters on his own volition, while I was at work, and asked what he could do to help. They had him roll posters for as long as he was willing.

Last week, we went together to a union hall for packets of addresses and directions to the neighborhood we were to work. If you haven’t done it before, you might think GOTV would be stressful, going to the doors of complete strangers. On Election Day, the goal is not to convince people to vote for the Democratic candidates but rather to make sure previously identified Democrats have voted and, if not, encourage them to do so as soon as possible. Generally, these voters are happy to see you, but Hugo was naturally nervous and went with me to the first few houses before we split up and took opposite sides of the streets we were working.

Working GOTV often reminds me of an issue that is important to me—the reality versus the mythology of poverty. See this Truthout.org piece on what these myths are and how perniciously they impact society: Lies of Plutocracy: Exploding Five Myths that Dehumanize the Poor. By chance, this year the neighborhoods I walked for the Democrats were poor, working class neighborhoods including one near the Akron Zoo, which I drive through often. When driving, I see the boarded up houses and the few that are in derelict condition.

But when going to the doors of the homes in this neighborhood, I saw what I do not when driving by at 35-45 miles an hour. Modest homes kept as tidy, if not tidier, than mine. Lawns edged around the sidewalks, weed-free gardens, porches swept clean.  Children well cared for and friendly. Ubiquitous evidence that poor people are overwhelmingly NOT lazy, no more so (perhaps even less so) than any other demographic. Many people gave me guarded looks when answering their doors—just as I do when strangers knock on my door, but once I identified myself as working for the Obama campaign, many adults were happy to talk with me about the election. Lyra was a great assist as I carried her on my chest in her Ergo baby carrier, older women often telling me to “keep that baby warm, now!”

Citizen Lyra helps with the 2012 GOTV

True confession: I enjoy working in predominantly African-American neighborhoods where I would not typically have reason to venture. It’s no secret that black Americans frequently do not feel welcome in predominantly white neighborhoods. The tragedy of Treyvon Martin earlier this year gives grim evidence as to why. So why should I feel entitled to waltz through a black neighborhood? Well, I don’t. Not because I am afraid I will be shot, I’m not, but as a white woman, I do not want anyone in a black neighborhood to think I’ve condescended to ask for his or her vote. And were the candidate for whom I was urging them to hustle to the polls for white, it just might smack of condescension. But he isn’t. The candidate, our president, is black and my children will not recall a time when a black president was unimaginable. But it is my opinion that Barack Obama is, irrespective of his color, one of the best presidents of my lifetime.

Shortly after Obama won his first presidential election, the satirical online magazine, The Onion, posted this piece: Nation’s Blacks Creeped Out By All The People Smiling At Them | The Onion – America’s Finest News Source. I suppose I’m one of those people, I felt so good after we elected (and re-elected, perhaps just as remarkably) Barack Obama. Yes, there is so much work to be done with regards to race relations and poverty in this country—and don’t think the two aren’t connected, they are. See point number three in the above TruthOut.org piece. Seemingly the hardest part is how to even have a discussion in this country about race, particularly across racial lines. Having a black man win the presidency and then win re-election does not mean we do not have significant work to do with regards to issues of race and poverty, we do. But we are, at least in leadership, in this one instance, moving in the right direction. And it momentarily puts a white middle class mama like me on common ground with some working-class black Americans. It is a place of hope for change, real change, because we all want the economy to improve and good jobs to become more plentiful. But to move past the intransigence of “Us versus Them”–whether the paradigm is class, color, religion, sexual orientation–is tectonic change. And a worthy goal. Perhaps the most worthy goal in life.

And so Hugo and I worked our packets, going to each and every door on our lists. That night, we stayed up to watch the results come in and, as we did four years ago, when Ohio was called for President Obama, we trudged out back and shot off three Roman Candles, before filing to bed. We were spent. Wednesday, my head ached and I was tired like a sick person. I did not drink the night of the election, but I felt hungover nonetheless. It’s over; finally this long election is over. May the work of our government, the essential work, now begin. May our leaders work with sincerity and not cynicism, for all citizens, not just those they agree with, and may they guide the nation out of war and economic recession. And perhaps in so doing, guide themselves away from polemic politicking.

On Thursday of last week, we took our little Lyra to the Down’s Clinic at Akron Children’s Hospital for an evaluation by their medical team. But that is a topic for another post, which I know Helga believes should reasonably post this week. If I can be sure of anything in this world it’s that she’ll keep after me until it does.

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Addendum to Voting Like I Parent

Many of you have asked if I’ve talked to my neighbors who are, to my surprise, voting for Romney-Ryan. Briefly, yes. And then I followed up with an email asking them to read the New Yorker’s endorsement of Obama (The New Yorker’s Endorsement of Barack Obama : The New Yorker). Because it’s a magazine, and not a newspaper, the New Yorker can and does go into greater depth and detail about why Obama should be re-elected and why Romney does not deserve the presidency.

Also, the Newsweek piece by Andrew Sullivan that I cited can be found here: Andrew Sullivan on the Promise of Obama’s Second Term – Newsweek and The Daily Beast.

Finally, I forgot to add that in addition to keeping good (great) grades, Hugo obtained a job at a dog groomers just before school began. He never has a day where he has not a single obligation, be it choir, band, or work. And he seems the better for it. He has so far paid $400 of the $750 he needs to go to NYC in March with the choir. He has also had to learn to navigate with his boss a performance schedule that at times conflicts with his work schedule. We parents do our children a great favor when we neglect to save them. They are better off saving themselves. Or, as I tell them, I will always push you, but I’ve got your backs.

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Voting Like I Parent

I abruptly stopped sleeping last night at three a.m. and stayed awake for over two hours, until Max’s phone alarm signaled what I already knew—5:30, time to get up. Only then was I able to doze lightly, which I did for an hour, the comforting sounds of my boys starting their day drifted in with the smell of the coffee Hugo had brewed.

Until I was in my late 20s, I slept deeply through the night, every night. My days in college and graduate school at Ohio State University were long–each day I walked miles to and around campus and worked most nights. I had a boyfriend who marveled, was jealous even, at how easily I dropped into solid sleep for eight to ten hours.

This ended, irrevocably it seems, when at 28 I gave birth to my first child. Not only did I wake to nurse him, I roused if he coughed, cried or just wiggled. Before he moved into his own room, I had another baby and then another. All four of my boys moved into their own rooms long ago and baby Lyra has slept through the night since birth (she’s a jackpot of a baby). Yet I often find myself awake at night, most commonly at three o’clock or, as I call it, my Fretting Hour. I fret about issues both personal and global, mostly stuff I have little or no control over and that seem all the more important because in the middle of the night my rational mind can be hard to locate.

However, since mid-August when Lyra was born, I have had little trouble sleeping through the night. I’ve been physically whooped due to the birth, the many visits to doctors’ offices and Akron Children’s Hospital. And then there are the other four children who still need attention, food, driven to school. It’s all good.

What kept me up last night started on Saturday when we were trick or treating in our neighborhood. “I didn’t know they were Republicans,” said my son Jules, dressed as a mad scientist, as we walked past the house of friends. When I assured him that they weren’t, he pointed to the Romney-Ryan sign by no means hiding in our friends’ front yard. I must have had visual denial to have missed it. These friends, like me, voted for Obama in 2008 and abhorred the Bush presidency and what it seemingly stood for—a prioritization of political party interests over those of the nation, like they’re playing some crazy football game in Washington D.C. These friends also believe in the full array of civil rights for our GLBT citizens and that women should receive equal pay for their work and have full access to health care. And I thought that they believed in a safety net for those citizens who need it.

Though Obama and his administration have worked towards long term goals for our nation and not politically expedient goals for his re-election–goals like averting economic disaster and rebuilding the economy, ending the war in Iraq, ensuring the rights of all citizens, rebuilding our relationships with our allies and, yes, bringing affordable healthcare to all Americans–these friends of mine want to fire Obama. I have been walking around gobsmacked because I now see that the race must really be as tight as the media says it is and perhaps Obama will lose.

I have long been a Democrat, but I didn’t start out that way and who knows? If the Republicans at all resembled the party that they were in the mid-twentieth century, when states rights, personal and fiscal responsibility were the hallmarks of their platform, I may yet have continued to vote for their candidates. Like Barry Goldwater, who had little to no tolerance for religious extremists, Christian fundamentalists who twist and turn history to convince themselves that our founding fathers would have us become a theocracy and expect the Republican party to swear allegiance to their agenda. Or Bob Dole, who became a staunch supporter of Food Stamp Act in 1964 and the Americans with Disabilities Act in 1990. The key difference between the pre- and post-Gingrich era Republicans seems to be an understanding of poverty. Older, if you will, Rockefeller Republicans who lived through the Great Depression and World War II did not view poverty as a character flaw but something that can happen to anyone. Now working class Americans are, according to Romney, a group who consider themselves victims and have become dependent upon the government and whom Romney does not take into consideration. He’s written them, including my children and me, off.

How did the Republicans win the hearts and minds of people who directly suffer from the consequences of their trickle down policies? How is it that my friends can reasonably blame the Bush Administration for getting the economy in such an abysmal state and then turn around and want to fire Obama for not fixing it fast enough and, furthermore, want to hand the reins of government back to the Republicans who will return us to the policies that got us in this mess to begin with?

I don’t have the answer to that question because I cannot imagine voting for a party that has become so ideologically extreme and capricious with power when they have it. I don’t reward my children for behaving irresponsibly, so why would I do so with my vote?

Consider my second son, Hugo, to whom everything comes easily and who has required by far more of my parenting time, energy and creative approaches than all of my other children put together. From the time he was toddler until quite recently, he has resisted being held accountable for his actions. Even if he had done something on accident, say bumped into another child causing him or her to fall, Hugo could not stand to apologize and would get in more trouble for his reaction to being busted than for the initial infraction. But I’ve continued to hang in there with him, show him that his behavior has consequences while trying to cultivate in him empathy for others. Sometimes I’m less graceful at this than others. Just ask Hugo and he’ll happily tell you how I once chased him through the house and up into his top bunk bed only to tell him if he ever went to jail I wouldn’t bail him out. He’s now fifteen and last spring I found myself constantly having to ride him to do his homework, household chores and manage his money. He wanted me simply to give him money when he needed it, clean up after him, drive him where he wanted to go and, ironically, monitor his schoolwork.

We had gotten into a cycle that was, for me at least, chronically frustrating. I would tell him repeatedly to do his homework and housework, he’d repeatedly agree to do it, but then wouldn’t. Instead he’d make excuses as to why he didn’t do what he said he would and continue to ask for money and rides. When this cycle of him telling me what I wanted to hear but never delivering on it became clear to me, I pulled the plug. I stopped monitoring his homework and I made him pay in cash to have his room vacuumed and dusted. I also stopped giving him money and rides. If he wanted to be treated like a roommate, so be it.

Hugo relaxing between school and marching band practice.

But as his mother, it’s my job to push him and I did so by putting his passion on the chopping block. Hugo plays in multiple bands and sing in multiple choirs at his high school, but it’s not what he does, a musician is who he is. I never have to tell him to practice music but rather often need him to put down the guitar in order to do other things (like homework and chores). Beginning this fall, I warned him that if his grades slip below a 3.7 I will pull him from one of his bands. I don’t check online to see if his homework has been turned in, I don’t ask about his grades. It’s his responsibility to organize himself, he’s old enough. The result? Hugo is exercising more self-discipline and I’m not haranguing him. He has all As on his first grade card of the year. And he’s frankly more pleasant to be around. This only works because Hugo knows, from experience, that I am not bluffing. I don’t play poker with my children when I tell them what consequences they can expect for their behavior, both good and bad. I always follow through (and truly it can at times be harder on me than on them to do so when I have to follow through on consequences for the bad).

The Republicans love power, they love being in power. To be fair, so do the Democrats, but so far the Dems still seem to generally remember that the best interests of the country, not just the party, are why they are in government. As Andrew Sullivan pointed out in the September 22nd issue of Newsweek, a second term for Barack Obama may just shake the GOP enough to move them away from the extreme right cliff they’ve found themselves on and back towards the center where good government and the majority of Americans can be found.

By this time next week, we will know if more of the electorate agree with me or if, like my friends, they believe the unsubstantiated promises of the GOP. In hopes of a better night’s sleep tonight, I went first thing this morning to my county’s Board of Elections and voted for a second term for Barack Obama and will follow up by volunteering for the campaign in the days ahead. I hope you will all join me.

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I See You and You See Me

“Your daughter sees like a newborn,” said her eye surgeon, “even though she’s two months old.”

Two months old? Isn’t that the same as newborn or at least, newly born? Well, yes, in terms of adjusting to another child in the household. But in terms of brain development, two months old is, well, getting up there.

Lyra was born on August 14 with many markers of Down syndrome (DS) and cataracts in both eyes. Because I am 46, I underwent many prenatal tests, except an amniocentesis, while expecting Lyra. The extensive blood work and high-level ultrasounds did not reveal any abnormalities and when I had a fetal echocardiogram, the cardiologist said everything looked beautiful and, “beautiful is better than good.” Having decided we would not terminate a pregnancy if the baby had DS, Max and I passed on an amnio.

Superstitiously or intuitively, I was certain I would lose the baby if I had an amnio. My Grandma Dorothy, who was a mother to me, had four boys and I have four boys. Her only daughter, her second child, died at birth because of the Rh blood factor. Grandma had negative blood and her baby girl’s was positive. I too have negative blood and my daughter’s is positive, but since the 1970s there has been a remedy. After each of my babies’ births, I was given a RhoGam shot, which prevented my body from building antibodies to positive blood.

Grandma kept trying for a daughter, even when my grandfather did not agree, but she only had boys. I, too, kept trying for daughter (albeit with full support from my partner), and when I learned my fifth child was female, I felt an amnio would cause me to lose my baby just as the Rh factor took Grandma’s daughter. It isn’t logical, I understand, but I felt emotionally very strong about this connection. I still do.

Lyra was born on a Tuesday. On Wednesday, we were squeezed into an appointment at a pediatricians’ office affiliated with Akron Children’s Hospital (ACH). They referred us to ACH’s pediatric geneticist whom we saw on Thursday and before we left, a vial of Lyra’s blood was drawn for genetic testing. On Friday, the blood results confirmed Lyra’s Down syndrome. The following Monday we saw our first pediatric ophthalmologist, who sent us to a second surgeon, who immediately scheduled Lyra for surgeries at the tender ages of six weeks and seven weeks.

Why so young? Because a newborn’s brain is bubbling with growth and without any visual input, Lyra’s brain would not have developed all the necessary components to process what it is to have sight. The same can be true of hearing and the other senses. Neurologist and author Oliver Saks has written accounts of adults regaining hearing only to be miserably confused and want to return to the deaf world their brains’ knew and understood. In the Val Kilmer film, At First Sight, a blind man has an operation to regain his vision. In a poignant scene, he cannot make sense of glass and ends up breaking a window.

And that’s how Lyra came to have eye surgery at the tender age of six and seven weeks. Each eye had to be dilated for a week post-surgery to minimize scarring after which she began wearing contact lenses. She’s too young for surgical implants–her eyes are still rapidly growing. Her contact lenses are similar to mine and will be cleaned monthly and replaced every three months. The correction, however, is not at all similar—I don’t see very well without my glasses or contacts as my prescription is about a -4. Lyra’s prescription is a +20.

Lyra after her right eye had the lensectomy. That eye is clear while the left has the visible cataract she was born with.

Oddly, I did not think of Lyra as blind until the first cataract was removed. But she was. When she was a month old and coming out of the newborn sleepiness, we noticed her eyes were starting to wander around, each rambling about in its socket. Her brain was becoming the brain of a blind person.

Only one in 10,000 kids with Down syndrome are born with cataracts, though most kids with cataracts have DS. Of all the possible and serious medical problems attendant to DS (heart problems of varying degrees of severity occur in forty to sixty percent of people with DS), we are grateful cataracts is all Lyra has to deal with. We felt that way immediately and said so to the ophthalomologist the first time we met him. Just as soon as he put her second contact in her left eye, her eyes began tracking in sync, her brain quickly discovering how to process all the visual stimulation she is now receiving.

After receiving both contact lenses, Lyra gobbles up all the visual stimulation she can get.

She has now been wearing both her lenses for one week and it is as if she has been awakened. She searches for our faces when she hears our voices, looks at our eyes and smiles. I loved my blind girl fiercely, but this smile of recognition by my now seeing daughter is incomparable to any other I’ve known. No lover has melted my heart with a single gaze the way this recently born peanut has.  Many years ago, when my big boys were wee, I learned a children’s song in which the verse goes, “I see you and you see me, la-la-la-la-la-la-la.” When I sing it to Lyra, as I often do lately, it is not a sweet, meaningless ditty. It says everything about the first two months of our life with Lyra and hers with us.

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Is Anybody Out There?

My family gets a daily newspaper delivered to our home every morning and, as we all stumble down and pour our coffee (everyone down to Jules, who’s 12, have a morning cuppa), we call out who gets the comics first, second and so on. The kids read most of the strips I don’t (or don’t often), such as Garfield. I read ones that they don’t, such as Doonesbury. I get it. When I was in college in the late 80s-early 90s, I had friends who read Doonesbury regularly, but I couldn’t keep track of all the characters and didn’t know their histories and it didn’t seem worth trying. That is until George W. Bush was president and was depicted as a floating and frayed Roman helmet.  I still don’t know the storylines of most of the characters prior to the Bush II administration, but I have continued to read Doonesbury daily.

And as I start this blog, my first that is not a class assignment or private loop to connect with other writers, but a put it out there public blog, many of Gary Trudeau’s latest strips concern a previously successful writer, Rick, who now finds himself blogging for free on Huffpo. His wife is a successful political operative, his ne’er-do-well son has a runaway bestselling (wholly fictitious) memoir, while Rick struggles to even gain access to interviewees. So blogging is like hitting bottom for writers, or traditional writerly types.

Which raises a question: Does anyone else in their 40s feel caught between the new and old? I wrote my high school, and many of my undergraduate, papers on an electric typewriter. We had to look things up on the card catalog in the library (remember how they smelled? Closed up trays of paper, exuding the possibility of anything you wanted to know), haul books home and search for the facts to back up our assertations. But computers and the internet came while we were still young enough to grab on and switch gears. Today my own children have to do something called “dialecticals” whenever they have a reading assignment in high school. Very busy work, in which students must cite usually 30 passages in the book and explain why they are important to the piece, which is designed to minimize oh-so-easy online cribbing. Are paperbound Cliff Notes even still published? I can no longer write with pen and paper for any length of time, but I agonize at the thought of publishing becoming an entirely (or mostly) electronic media. I once crafted an entire (Flintstone-esque) living room suite of furniture using all my boxes of books I had yet unpacked after moving. I had a couch that could seat four, a coffee table and a recliner. I should have taken a picture, which would have been with a camera containing film (sigh).

But back to blogging: Unlike the fictitious Rick, I don’t have a successful writing career in my past. I’ve written successful academic papers, grant applications, newlsetters and so on, but I haven’t received paychecks strictly for my writing. I’m starting at the bottom. Many of my big plans have shifted over the nearly 19 years I’ve been a mother. Most recently, Max and I decided to have one more baby so that two-year-old Leif would have a sibling to grow with at home after all his older brothers had gone off. We assumed that before this last baby was born I’d have fulltime employment with benefits–career employment. We assumed incorrectly.

So here I am trying to write with small children at my breasts and knees (at least my breasts aren’t at my knees, not yet). I’m not an overachiever, try as I might to be one, so blogging feels about right. And since I started Whoopsie Piggle, all of a week ago, I find I’m thinking once again like a writer.

My 18-year-old son is coming home from college this weekend and I plan to have him help me with the technical aspects of this new endeavor. Unlike the blogger in Doonesbury, my boy won’t make me feel out of touch. Of course, my boy hasn’t published a runaway bestseller either. Not yet.

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Sunday Morning Start (Monday Evening Finish)

Blogs, hmm, who does that?

I have found the few mom blogs I’ve viewed are often intimidating or annoying–who has the time to cook fresh meals from scratch (locally grown, organic ingredients), hand wash cloth diapers and start a charity for children and their families? Hippie Martha Stewarts. Right, except there is that fantasy lurking in the depths of my soul too. Clean, yet quirky home. Artistically talented, yet always polite children. Very accessible mom who also has a successful career. Whoa, so what I don’t like about these blogs is probably what I want but haven’t managed to manifest. I stopped looking almost instantly.

Besides, who wants to be boxed into a mom-blog? Ah, Doris Day in Please Don’t Eat the Daisies is told by her husband, David Niven, that she is so much more than a housewife. “All housewives are,” she tells him. That was in 1960. Does anyone call themself a housewife today? I doubt it, but the bill of goods my generation was sold was have it all–career, children and great style. And make your parenting attachment style. And your career creative and lucrative and your style flippin’ creative as hell. Yeah, well, it seems the sales force was setting us up for failure or at least abiding frustration.

Here’s my reality:

I’m a 46-year-old mom of four boys, ages 18 to two years old, and one daughter who is six weeks old. Truly, had the two-year-old been a girl, I’d have stopped there. But I just knew this one would be a girl (yeah, so what if I’ve been wrong before?) and when our daughter was born last month the first question I asked the midwife was, “Is there a vagina?” She told me to just look myself. Yep, the ultrasound had not lied, girl, girl, girl! Yippee! I held our girl and we looked at her. Bluish, alienesque newborn, as they all are when they first pop out, we quickly noticed some other things. “Her eyes look Downsy,” I told the midwife. She calmly told me she’d do a newborn exam in a few minutes. The skin on the back of her neck was voluminous, when she turned her head she looked like she had a handle of flesh back there. And her pupils were ghostly white.

Our girl was born with Down syndrome and bi-lateral cataracts. She has been the primary focus of life this past month and a half, but not our only focus.

My oldest son, the first three children are from a previous marriage, went off to the University of Michigan ten days after his sister was born. The second boy is in the throes of marching band season and puppy love with a young woman who lives in Montreal (we are in O-HI-O), the third boy is working through hard issues with his father while the two-year-old is just that, replete with tantrums and an explosion of language and ideas.

Claude, Hugo, Jules, Leif and Lyra. Until I was in my late 20s, I swore I’d never have kids. I was my mother’s only child and neither of my parents impressed me with their parenting. Frankly, I was afraid of becoming a mother. But the urge kicked in when I was in my late 20s (hormones perhaps, mixed with a crazy love) and now here I am, the mother of a family considered large by most American standards.

I’ve been looking for fulltime work for five years. I received my MFA in creative writing at the end of 2010 in the worst economy I’ve ever lived through (and unless you are 90+ or from Brazil, it’s the worst economy you’ve lived through too). Last year, I worked at the local Waldorf school, where my kids  attend(ed) but the cost of two babies in daycare is $300 more a month than I was making. So I’m telling myself I’m on Maternity Leave (italics make it more official). I’m figuring out what’s next as things feel like a new segment of life is unfolding. One child launching, one arriving with a genetic disorder. I love having a job, feeling useful, collecting my pay. But if I’m on Maternity Leave I can ease up on the job hunt and start this blog, clean some closets, maybe even read some books. All while learning what Lyra’s needs will be long term.

It was a month before Lyra was born when a friend suggested I write a blog. It was all I could do to not impolitely dismiss her idea out of hand. But the idea geminated and I was given encouragement by my partner, Max (who is Leif and Lyra’s father). Claude started a blog as part of his homework for one of his college classes using WordPress and said it was easy to set up. And other than getting past all the ways I can give WordPress money, it was.

So here goes (yeah, the first post is mom-blog-ish).

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