Tag Archives: pediatric blood draws

Lyra’s Latest: In Need of the Next Map

Our home has been temporarily rearranged. The water bowl for the dogs and cats is now commonly found on the kitchen counter while the bathroom trash cans currently reside atop the closed lids of the toilets. A paper grocery bag containing paper recycling was handily located in the kitchen. Lately it can be found a few feet away in a lower level vestibule, which is inaccessible to the littlest resident of our home who knows how to climb up, but not down, stairs. She mastered stair ascension when she discovered the bin of bath toys hidden in the empty tub, alongside of which is a single step.

Lyra reorganizesLyra, our curious baby, is on the move and eager to exercise her self-determined mission: find all containers, empty them of their contents and, before spreading said contents far and wide, taste as many of them as possible. Hence, the reorganization of our home, something I have had to do four times before when each of my boys were curious and accomplished crawlers. She may be older than they were at this stage, but she doesn’t look it. Furthermore, her mind works just as theirs did—once a container full of clean diapers or dirty trash, toys or recycling (all equally appealing it seems), has been discovered, the site is frequently revisited.

From my earliest conception of Whoopsie Piggle, I planned to write about our entire family and not just our youngest child, Lyra, and her diagnosis of Down syndrome because her diagnosis neither defines who she is as a person nor who we are as a family. Yes, her diagnosis helps us to understand her needs in order to better meet them, just as the diagnoses of dyslexia helped us to meet the needs of her older brothers, Claude and Jules. In fact, in the past few months it has been harder to write essays isolating the latest in Lyra’s life. On occasion we have bigger issues to address, but most days are entirely mundane and typical of any household with a crawling baby. Lyra is no longer brand new. She exhibits a fully formed personality with many things that make her giggle (her brother Leif, getting tossed in the air, singing to the pretty baby in the mirror, kisses on her neck) and others that make her howl (diaper changes, bedtime, hunger, blood draws, contact lens changes). Lyra is an integrated and integral member of our family. Certainly she has made great developmental strides thus far this year and yet this fact makes her seem all the more typical and her accomplishments less, not more, noteworthy.

A Babyhood of Appointments

The first few years of life for a child with Down syndrome often require regular interventions in order to acquire well-developed gross motor skills (sitting up, crawling, walking, running) and fine motor skills (i.e., purposeful hand skills such as self-feeding), and speech. The common culprit underlying these delays is not necessarily a cognitive issue, but hypotonia, or low muscle tone, which affects almost all babies with Down syndrome. In talking with parents of older children with DS, including adult children, many recall the constant work in the early years of their child’s life. Since she was three months old, Lyra has had regular therapies (speech, physical and occupational). For the last six months, she has gone twice a month to Akron Children’s Hospital for what they call an “infant block” in which all three of her therapies are conducted back-to-back by a team of therapists who discuss and coordinate her care.

When older children and adults receive therapies, as many people do after an injury or medical event, the therapist trains the individual. But when the client is a baby, the therapists train the caregivers more than the client. Yes, Lyra recognizes her therapists and knows her way around the room where they conduct her appointments. But to Lyra therapy must seem like a play date. The occupational therapist blows soap bubbles for Lyra to pop with her forefinger, the speech therapist looks into a mirror with Lyra as together they sing songs and practice sounds, and the physical therapist pulls out toys that engage Lyra so deeply she doesn’t notice she had to climb a small hill or stand up on her own to reach whatever bright, noisy (and oh-so-non-Waldorf) plaything the therapist uses as bait. And then we try to replicate it all at home.

Meanwhile, back at home, Lyra is also visited by her Summit County Developmental Disability Board caseworker and her Cleveland Sight Center caseworker, both of whom observe her progress and also make recommendations, generally taking into account our home environment. For example, instead of buying an expensive Little Tikes climbing wall, as Lyra’s pediatrician had urged, they helped me arrange the tumbling mat we own over some pillows, which Lyra now repeatedly climbs up and over.

Sometimes the folks coming to our home tell us the very same thing I hear at the hospital. Other times, they do not. For example, after Army-crawling for three months, Lyra began crawling on her hands and knees and soon thereafter she started what we call “bear-walking,” or walking on her hands and feet. And even though it has given Lyra a speed and facility at dumping out trash, recycling, toys and whatever else she can find, we have been rooting her on. It’s thrilling to see her motor around and the hospital’s physical therapist agreed. Her caseworkers were less excited. Sure, it’s great that she’s getting stronger and moving. But her back legs were being held too far apart, like an upside down wide V, putting pressure on her hip sockets. Along with hypotonia, people with Down syndrome commonly have ligament laxity and by stressing the exterior of her hip sockets, the caseworkers explained, Lyra can wear down her ligaments thereby opening the door for a host of other issues, including chronic pain.

The solution? Hip Helpers. We used these many months ago, when Lyra was learning to sit up on her own, but they were all but moth-balled since Lyra took off Army-crawling in January. Like a pair of tight spandex shorts, Lyra’s daycare provider and I both refer to them as Lyra’s “Spanx,” the modern day equivalent of a girdle. Hugo calls them Lyra’s “mermaid thingies” as they keep her thighs together like a big fish tail. Under her dresses and skirts, Lyra’s Hip Helpers look like baby shorts, stylish even. With them on, however, she cannot zip around as easily. For now, that is. The goal is to retrain Lyra’s legs to move correctly, and not splayed out, as she ambulates, something she is highly motivated to do (so many trash/toy/recycling bins, so little time).

For two weeks, Lyra wore her Hip Helpers all day, every day. Then we had our next Infant Block appointment at the hospital where the physical therapist pointed out that Lyra locked her knees more when wearing the Hip Helpers. Also important, the hospital therapist questioned making Lyra struggle with a skill she had just acquired (bear crawling). And so, we agreed upon the middle path (or the Buddhist take on pretty much everything)–not too much, not too little and, as of this week, our busy monkey spends about half her days in her Hip Helpers.

Speaking with a Star

I just saw an adult with DS at the movie theater and I wanted to run up and hug him. It was like a celebrity sighting LOL. Is that just me?

~A post on a Facebook group for mothers with babies born in 2012 and 2013 and diagnosed with Down syndrome.

Comedian Rob Snow and his wife, Ellen, who live in Northeast Ohio, founded the non-profit organization, Stand Up For Downs. In his routine titled, “We Need a Sign,” Snow describes a walk he took shortly after his son Henry was born with Down syndrome. When Snow saw a family of children running and playing in their yard, including a girl with Down syndrome, he was momentarily riveted as he watched the girl doing and being everything any other child her age would do or be. When the children ran off, Snow noticed a woman, presumably the girl’s mother, looking at him with irritation, if not outright anger. She thought he was a rude gawker. The moment was awkward and Snow quickly walked away without explaining that he had a newborn son with Down syndrome. We need a sign to let one another know, “Yeah, me too, my child has Down syndrome.”

I laughed throughout most of Snow’s routine at a new parent event sponsored by our local support group when Lyra was only a couple of months old. But as he described staring at the girl and not finding a way to talk with her mother, color rose up my neck and my ears became hot with embarrassment. When Lyra was perhaps a week or two old, we had taken her and the boys to Five Guys Burgers for lunch. Asleep in her car seat, Jules sat with Lyra at a table while the rest of us got in line. Behind us, but separated by another group of people, was a family that reverse-mirrored our own—instead of four boys and a baby girl, they had several daughters and little son, who appeared to be about Leif’s age, which was two-and-a-half at the time. Leif and the little boy pushed the red cordon, hung between posts to form an orderly queue at the restaurant, with their hands to make it swing back and forth. The two little boys were twin-like–they stood at the same height, had equally white-blonde hair, and deep blue eyes. But the other little boy’s eyes had the characteristic shape associated with Down syndrome. Staring does not describe my behavior. I scrutinized the child, who had on a red zip-up hoodie from the Gap and blue jeans, an outfit nearly identical to Leif’s, and only tore my eyes away to shyly smile at the child’s father, a big man with a beard who smiled in return. I wanted desperately to tell him and his wife that my new baby had been diagnosed with Down syndrome but I was uncharacteristically struck speechless.

In the first few months after Lyra was born and we learned she has Down syndrome, I regularly wondered how having an extra chromosome would effect Lyra. Would she talk? Would I be able to understand her? Would she develop like other children or would she be a perpetual infant? I did not know and nobody could tell us. Sighting an older child, even one who was only two or three years old, when Lyra’s life had just begun, loosened my mind’s grip on my worst fears by showing me: This too is possible, a child more alike than different.

Last weekend, we were seated in the waiting room of the lab at Akron Children’s Hospital where we take Lyra quarterly to have her blood drawn for a thyroid level check. A woman and teenaged girl with Down syndrome walked in and I (rudely) listened to the mother give her daughter’s date of birth to the receptionist. The girl had recently turned fourteen, which makes her only a couple of months older than our son Jules. With Lyra in my lap, the mother and daughter began talking to us before they sat down.

“She loves babies,” said the mother.

“Yes, I do!” said the daughter.

When the phlebotomist called for Lyra, Max took her back while I stayed and talked with the two women, and a pattern I’ve now seen many times emerged: the daughter spoke and then the mother repeated and/or clarified what her daughter said.

Me: I love your nail polish.

Girl: My mom did my toes, but I did my hands.

Mom: I did her feet, but she did her fingers, well, most of them I see. She’s so             independent; she tells me all the time, I’ll do it myself!

Me: What grade are you in?

Girl: Seventh grade. I love school, I’m a cheerleader.

Mom: She’s in the seventh grade; it’s a great school. They have a cheerleading squad called the “Sparkles.”

Girl: Yes, I’m a cheerleader.

Mom: She’s like a rock star at her school, seriously.

We stopped talking when Max brought out a sobbing Lyra with both elbows wrapped in Day-Glo pink cling tape, used these days instead of Band-aids to hold a gauze compress at the site of the blood draw. They had not been able to get a sample of Lyra’s blood and Max described a scene I’ve witnessed all too often in which the phlebotomist sticks Lyra’s arm with the needle but cannot find the vein and begins grinding the needle around in her arm in an attempt to locate the vein. We were told to bring her back on another day for another round of this torture.

As I begin comfort-nursing Lyra, the girl I had been talking with was called back for her blood draw and in what seems like less than a minute, she’s back out, tear-free.

“Wow, that was fast!” I told her.

“Yeah, I’m a big girl,” she said and Max slapped her a high-five.

Right Before Our Eyes—What We Did Not Know

“20/270, that eye is legally blind and 20/180, that eye is what they call ‘legally visually impaired’ but any school district would categorize her as legally blind,” said Lyra’s vision specialist.

“That’s with her contact lenses in?”

“Oh, yes. Without the contacts—well, she has no lenses inside her eyes, as you know, and without the contacts, it would be much worse.”

“But how can this be? Every time we see the ophthalmologist, he tells us her eyes look great and that he couldn’t be more pleased. And she sees us, the things she plays with. I mean, she certainly moves from one side of the kitchen to the other to get to the bag of paper recycling. Is it just that she remembers that it’s there?”

“Well, certainly her memory is helping play a role in how she uses her vision. This is a very non-medical explanation, but imagine what you see at 270 feet, she would need to be only 20 feet away to see the same thing. And I like to tell my parents that it is like a big funnel. Right now, Lyra is looking at the big world around her, but as she begins to focus on holding a crayon, writing, reading—really narrowing her field of vision for specific tasks, her visual limitations will become more apparent.”

I paused and thought of something I had long noticed: when Lyra is in my arms, her eyes are wide open, big and blue and often staring into my own. But when she is more than a couple feet away, she squints. I have a hard time capturing her in photos without her squinting, but usually when I am taking her picture, I am more than a couple of feet away. Just as when I try to read the clock in the morning without first putting on my glasses, Lyra squints in an effort to see more clearly.

“So what I want from you now,” I said, my voice becoming husky as I grabbed a tissue to mop the tears suddenly springing out from behind my glasses, “is for you to look into your crystal ball. Like, does this mean she’ll walk with a cane?”

“Well, first of all, I think her left eye is already better than when this last test was taken. And we have until she is about age five or six for her eyes to improve. Now when she starts walking, she’ll probably have glasses as well as her contacts because she’ll need the glasses to give her the ability to see in the distance, like a bifocal.”

“Okay.”

“But it’s good she’s crawling for so long because she is learning where all the bumps are in your floors.”

“Wow, so I guess we can never move from this house.”

“Nope,” said the vision specialist and smiling playfully she added, “Nor can you ever move the furniture.”

“So what about when she’s out? She will need a cane then?” The notion of Lyra walking with a cane suddenly became emblematic of everything I feared about her being blind: With just a glance, anyone would recognize her two disabilities for which she may be unfairly assessed as not capable of any number of things she deserves, including employment, housing, and civility.

“Well, I can’t say for sure, but I don’t think so. However, we will teach her techniques, such as sliding the outside of her hand, with her fingers cupped so they don’t get caught behind things like fire extinguishers, alongside the wall of a room she’s unfamiliar with so she’ll not run into things.”

“Ahh,” I say as it all starts to click.

All We Can Handle

I’ve long known that Lyra’s ophthalmologist does not like to talk about Lyra’s vision, or about what procedures, or outcomes to anticipate. I know this because he’s told me as much. I chalk it up to needing to wait and see how Lyra develops. If she does great with contact lenses, stick with contacts and avoid more surgery. At her strabismus surgeries last summer, her ophthalmologist told us that as she got older he would be able to put her in different, less bulbous, contact lenses. Her vision was corrected for the world of a baby, roughly up to two feet away, but he said that he’d change her correction as she got older and began walking.

Because of these conversations, we believed all along that Lyra was seeing, well normally, like most any other baby. Instead she’s legally blind. I only worried about it when another mother wrote to me, a woman I do not know but who recently was put in touch with me by a mutual friend. This woman’s son, who is a few months younger than Lyra, was also born with bilateral cataracts and now sees at 20/60 and 20/90 and she was worried about what his future would be like. I wrote and told this mother what we are doing for Lyra but never heard from her again and I wonder if it isn’t because Lyra’s vision is substantially worse than her son’s vision. Her letter inspired me to call Lyra’s vision specialist and ask her to sit down and tell me what a vision acuity score of 20/180 and 20/270 mean for Lyra long term.

I imagine had the ophthalmologist told me in detail at Lyra’s first surgeries, more than a year and a half ago, what we would be facing when she was older, it would have overwhelmed me or, at the least, been so much information on top of the information we needed in the immediate moment, that I would have forgotten much of what he said. To be honest, perhaps he did tell us much of what we now need to consider and it did slip into the cracks of my overloaded brain.

Climbing mountains, no matter how high, happens one step at a time.

Normal Is As Normal Does

Lyra will turn two in August. She talks, uses sign language, plays with her brothers and her daycare friends, sings songs, makes animal sounds on her own and when asked, crawls, “sorts” laundry, pats my back just as I pat hers, just as all my babies often patted my back when held up to my shoulder because that is what I do to them. Lyra’s daycare provider could not love Lyra more if she were her biological niece. Everyday of her life, everywhere she goes, Lyra is encouraged to move her body in ways that will protect her health long-term, and avoid issues such as displaced hips and pronated feet.

We did not anticipate how musical Lyra would be when we gave her a name related to the word “lyrical.” Perhaps the name was providentially chosen for nothing pleases Lyra more than singing. Much of her speech has developed through song, she is calmed by song when sad and I even use it as part of my arsenal to distract her when need be. Placing her in front of the mirror on my dresser, Lyra and I sing together while pulling her hair back into a ponytail, something she otherwise resists.

For several weeks, Lyra’s team, including everyone in the family, her therapists and her daycare provider have talked about how it’s coming together beautifully for Lyra and all the progress she has made and continues to make. At Akron Children’s Hospital, the therapists tell me, each and every visit, what a thrill it is for them to see what new things Lyra has learned since her previous visit.

Learning Lyra is legally blind was not devastating, but to use a cliché, I felt the wind drop from the sails of all that wonderful momentum in Lyra’s development. This too? Isn’t Down syndrome enough? But that is me feeling sorry mostly for me and not Lyra who, after all, only knows what she knows. For her, life is full of loving people and good times. She’s as happy as a baby should be and not moping about because she has to work harder to crawl and can’t see as well as anyone else she knows. Again, for now at least, she isn’t aware of any differences. Who knows how she’ll feel one day when she does realize how her life is different? My personal experience now having met so many people of all ages with Down syndrome, as well as the scientific research, gives me every reason to believe Lyra will be happy with who she is.

So we breathe in, breathe out and pick up the phone. First call: The ophthalmologist to learn what we can do to improve Lyra’s vision before she turns five years old. Second call: The vision specialist to learn what compensatory techniques Lyra can begin learning now.

And, as with all things, our journey continues. One step at a time.

Snapshots

Life Changes in a Moment

Each time a child is born, a family reconfigures itself. A couple become parents, an only child becomes a sibling. In families with several children, the baby is no longer the baby. We knew and expected this familiar shift last summer as we awaited the birth of our first daughter.

Then our girl arrived with her unexpected extra chromosome. Several essays about family were already mulling around in my brain when, a few weeks before Lyra was born, a friend suggested I start a blog. Since her birth and diagnoses (Ds + cataracts), there has been nothing else, for now, I can write about except this family. This includes politics & religion, which are, in my mind, intrinsic to family. Our beliefs are the windows from which we view the world and our places in it. And how others see us.

The beauty of a blog is that the author is in charge. I decide not only the topics (this family we’ve piggled together), but also the form. I find it somewhat impossible to write short, chirpy posts. I write essays. Perhaps I am limiting my readership by requiring more time and, frankly, work from readers but I am nonetheless committed to essays. Again, it seems I am incapable of anything else at the moment.

If essays require the reader to work, they require from the writer, at least this writer, hours of time, writing and re-writing, walking away and thinking only to write and re-write yet again. And more than anything, they require hours of uninterrupted silence.

Summertime, Summertime

I have written  two recent essays about how full up our house is now that everyone is home from school. And too, we have an added friend and her two dogs staying with us. Even when they aren’t forming a steady line of traffic into my office to ask what they promise are important questions (Can I eat last night’s leftovers for lunch? Do you know how much money is in my bank account? Can we go to the bird store when you’re done writing? Do you have any masking tape in your desk?), the cacophonous background noise dings and dents my attention like spitballs shot from modified Bic pens.

WPCardI am currently working on two essays of greater complexity. I’m beginning to think I will not finish them until September when four of our eight residents have returned to school, one in another state. So instead, I have worked on things I can do with regular interruption: Improving the look of Whoopsie Piggle–adding side bar features, including a link to all the “Lyra’s Latest” posts. Opening a gmail account for Whoopsie Piggle. Creating and purchasing Whoopsie Piggle business cards to take with me to the National Down Syndrome Congress conference. And at my request, Whoopsie Piggle has been linked to a site for Down syndrome blogs.

The Business of Writing

Which is to say, I’m using summer for the business of writing. You ask, “The business of writing?” Yes, the other side of being a writer is working to get you stuff out there. Getting published in one form or another. I’ve often wondered if some of the world’s best writing isn’t moldering in desk drawers because creativity and business savvy don’t always reside in one brain.  And perhaps therein lies the rub of blogging: anyone can do it because, in fact, it is self-publishing. In the old days (i.e. anything before 2000), self-publishing was synonymous with vanity publishing. People would spend small fortunes to have their book–be it memoir, novel, short story or poetry collection–printed and bound. Copies would be distributed to friends and when the author died, his or her family would have to decide what to do with the dozens, if not hundreds, of copies remaining in boxes in the basement.

Writing time so hard to come by, such a valuable commodity, I’m hard pressed to do anything but write, rather than work on submissions, whenever I can.

And so it is when other writers ask what I am doing these days, I find a distinct age break in their responses. When I tell writers over forty that I’m writing a blog, they struggle to keep their faces composed while saying something like, “Oh, really?” before quickly changing the subject. Writers under forty, however, light up with surprise at someone of my advanced age (47) working in this immediate, techno-format before saying, “That’s so cool! What’s the name of your blog? I’ll check it out,” as they type “Whoopsie Piggle” somewhere on their little smartphones.

True Confession: Part of why I’ve dedicated myself to writing in this format is because it’s all I have time for right now. As I’ve mentioned in prior essays, women writers in the canon are rarely mothers. It’s no coincidence. Getting published in anything credible takes not only talent, but time. Research is required to find where to submit, query letters must be written and sent, logs kept of submissions and so on. One can argue that it is easier to be a woman writer today. Perhaps. But I went off and had five kids and feel compelled to raise them all attachment style.

A Week of Whoopsie Piggle

July 4, 2013

A valient, yet unsuccessful, rescue attempt
A valient, yet unsuccessful, rescue attempt

Max and I get up at six a.m. because we both have work to do. I have over a hundred pages to proof and he has legal documents to write. When finished, we shower and pack. By 11 a.m., we are on the road to my stepmom’s in Charlevoix, Michigan. Three hours later, we stop in Ann Arbor, Michigan for coffee and to switch drivers. So Leif can shake a leg and run around while I nurse Lyra, I suggest we drink our Starbucks at an outside table. In one hand, Leif holds his favorite Thomas the Tank Engine. In the other hand is the race car, Lightning McQueen, of Pixar fame. Before I can even sit at a table, Leif bends over a metal rain grate in the grass and drops Lightening McQueen down a hole that is six feet deep. Nearly two hours later, after several valiant rescue attempts with a ball of duct tape wrapped around the end of a measuring tape, we convince Leif that his little red car is going on an adventure. Without Leif.

July 5, 2013

Ulrick'sMax wakes up at six a.m. in our 1950s style cabin, quietly dresses and drives to town for coffee, crackers and whitefish paté (a Michigan treat for the adults), cereal and milk (a morning standard for the kids). Jules, who had been with his grandparents for the previous two weeks, shares a bed with Leif. As everyone dresses and eats, I search through all our bags for Lyra’s Synthroid, which she must take on an empty stomach at the same time every day. I cannot find it. We drop Jules and Leif at the grandparents’ house and spend the better part of three hours finding a pharmacy with the correct dosage and getting her prescription filled. When we rejoin the boys on Michigan Beach, Leif is asleep on a towel. I lie next to him and promptly doze while Max and Jules build earthworks in the sand.

July 6, 2013

IMG_1943 IMG_1944 IMG_1945I struggle after one of my annoying insomniac episodes. Two a.m. and * bing * I’m awake for three hours. As a result, I’m not the most pleasant person in the morning. Brittle, in fact. Max is patient and loads us all up in the car. We drive 50 miles north and cross the Mackinac Bridge (pronounced mack-in-awe), one of the world’s largest suspension bridges, which connects Michigan’s two peninsulas. North of the bridge is the Upper Peninsula, or UP. We find lunch before heading to a Lake Michigan beach that is banked by twenty-foot sand dunes. We play where the Brevoort River, its water the color of iced tea from tannic acid, empties into Lake Michigan, the lake’s water strikingly warmer than it is in Charlevoix. When we get back to the grandparents’ by 4 o’clock, we find that most frustrating of all family dynamics: miscommunication. Grandma had wanted to go with us. I thought she and Max had discussed it. He assumed she couldn’t travel that far. She didn’t want us to turn around after she realized we’d left, so she didn’t say anything until we returned. Sigh, sometimes even the simple things aren’t easy.

July 7, 2013

20 mph on I-75 all the way down Michigan. 13.5 hours of travel. With small children.

July 8, 2013

Post-trip errands. The usual—grocery store, bank, gas. And then I take Lyra for a thyroid blood draw. She’s clicking mentally these days, which is beyond great. Except when she looks me in the eyes as I hold her squirming body down for one nurse and then another as each of them root with a needle in her tiny arm, trying to find a vein to give them the blood they need to fill the order.

How can you let them do this? Lyra’s eyes look at me as though she’s just learned I’ve told her a lie that changes everything she understands.

“It’ll be okay, shhh-shhh,” I tell her.

You are supposed to protect me, this is not okay, they are hurting me, why aren’t you making them stop? She demands of me with her eyes.

July 9, 2013

After morning daycare, I drive Lyra to Medina where she not only does her bi-weekly physical therapy, but also has an occupational therapy evaluation. She does great and immediately picks up a toy with her left hand and transitions it to her right one. Still, she needs a little help with the getting things to her mouth and the pincer grip. More appointments are scheduled.

July 10, 2013

At 8 a.m., Lyra and I meet with her endocrinologist, who tells me her thyroid numbers are finally at therapeutic levels. And in one month I will get to hold her down for another blood draw before she has her next eye surgery.

That afternoon, Jules and Nancy watch a movie while I am working in my office. A storm erupts as though driven in by the four horsemen of the apocalypse. “Mama! Water is pouring in the basement!” Jules runs in to tell me. Only one of our basement windows, which are all glass blocked, has a small opening for ventilation. The drain in the window well of that window has backed up. While Nancy and Jules hold trashcans and storage bins under the window to catch the flowing water, I run outside. For over an hour, I heave five gallon buckets of water out of the window well. When the water is below the opening in the middle of the glass blocked window, Jules comes out and helps me. Five gallons weighs 40 pounds, Jules weighs 90. Yet he carried and dumped bucket after bucket for more than half an hour.

Providential: We were home and caught it as it happened. Equally miraculous was that none of us were struck by lightening as it exploded all around us for nearly two hours.

Oddest of all was our little emergency took place in the front of our house while traffic backed up on our busy street. Later, we discussed how it felt like we were part of some surreal staged drama.

Carry On

Two days after the flood, we welcomed a stranger to our home. Zac will be renting a room in my house, the house the boys and I lived in before we moved in with Max. Zac’s lease begins August first, but his classes started July 15. Last week, I volunteered to house him in our basement in the interim.  Well, scratch that. He’s staying on a mattress on the floor of our cramped enclosed porch.

Yes, that makes nine people in our house. Four of us, however, are leaving for Denver and the previously mentioned annual conference of the National Down Syndrome Congress. I am driving with Jules, Leif and Lyra. When Max flies out to join us, I imagine the house will feel empty sheltering only four adults.

A two-day drive each way, Colorado is our next adventure. It need not be exciting.

I’ll try and keep you posted.