Where There Is Love

February 13, 2015February 13, 2015 whoopsiepiggle1 Comment

“I don’t buy cartoons for Valentine’s, you know that,” I said, standing in the kitchen. Hugo snatched up my hands in his and lifted them up as though he were going to kiss my fingers. Instead, he began running in place, giving my hands little squeezes to punctuate his points.

“No, but wait, wait, The Book of Life is both a love story and a musical. And…it’s really, really good, and you loved it too!” he said in the little-kid voice he uses when he wants something from me. “Please, please, please? Oh, and, uh, guess who’s never seen it? Go ahead, guess!”

“Oh, that poor girl,” I said knowing exactly whom he meant, “What has she seen? Anything?”

“Nope, nothing important. Not until me.”

Hugo, who might categorize such things with different criteria, is in his first serious relationship. Soon after he and his young lady became an item last fall, Hugo started steadily showing her all his favorite movies, many of them past Valentine’s gifts, including Across the Universe, Seven Brides for Seven Brothers, and last year’s mold-breaker (because it’s not a musical but, oh, so wonderful), About Time.

I took Hugo’s argument under serious consideration, as I have in the past, but perhaps more so this year. For next year, with any luck, Hugo will not be here; he will be off at college training his already lovely baritone to perform on professional stages. Yes, our Valentine’s tradition of giving the kids a DVD of a (usually classic Hollywood) musical will continue and, as has been the case with his older brother, Claude, I am sure Hugo will return home each year and view the latest love story. But it’s different when they are living mostly away at school and this one, Hugo, particularly needs to go to a college somewhere far enough away that he can’t pop over and do his laundry on the weekends. Or beg me to do it for him.

Time Turns

But it is not only Hugo who will transition this year. Max and I try to find ways to bind our two little children’s experiences with those of the big boys, which isn’t always easy given the nine-year gap between Jules, the third child and Leif, the fourth. That is why we decided, among other reasons, to send Leif to the Waldorf school when he was three (and had finally potty trained), the earliest the school accepts preschoolers. For two years, Leif and Jules have been schoolmates, sharing the same rituals and traditions, including making Valentines for all their classmates and teachers.

Jules was six months old when I first enrolled Claude and Hugo at the Waldorf school in January of 2001 and we began making the 70-mile round trip drive from our home in downtown Cleveland to the school, doing so for three school years before moving to Akron. Rather than drive 140 miles each day by going home and returning, I stayed in Akron most days, often volunteering at the school. With Jules in a baby backpack, I helped prepare and serve the once-a-week hot lunch. When he was older and could walk and follow instructions, toddler Jules was my assistant, passing out napkins and silverware to the “big kids” in the preschool/kindergarten class.

At our Waldorf school the students stay with the same teacher from grades one through eight. Now in the eighth grade, Jules and all his classmates have been together since kindergarten, the only exception being a child who joined them at the beginning of first grade. Next year, as we do not have a Waldorf high school, these kids will enroll in at least five different schools with only one child possibly joining Jules at Firestone High School. Rather than making his Valentines as he has always done, this year Jules bought a box of notecards. He wanted to write something to each of his classmates because Jules has recognized, somewhat suddenly with this sweet holiday, that a large part of his childhood, really his entire life thus far, is formally ending.

Knowing When Love Is Real

There I was, all last fall I telling Hugo, Research schools and apply now. I cajoled him, Just think of all the cool places you could go next year! I explained ad infinitum the benefits, If you start applying now we can have this all done by winter break! And I threatened punishment if he did not apply to some freaking colleges already, with absolutely no results. Then, in late November, his vocal coach told him to apply to the Eastman School of Music. For those of you who don’t know, like me until a few months ago, the Eastman School of Music is on the same level as music schools such as Oberlin, Indiana University, and Juilliard; it’s a “reach” school. Yet once some other, non-related, adult told Hugo to apply to this vaunted college, he was like, “Oh, sure, no problem, I’ll get right on that.” Thanksgiving weekend, while the rest of us were with Grandma and Grandpa in northern Michigan, Hugo stayed home and recorded a DVD with the help of his vocal instructor, filled out the application, wrote the essays and sent it all off to Eastman. A month later, we learned he had passed the pre-screening and was invited to audition. And somehow this also inspired Hugo to go ahead and apply to five more schools over the holiday break. Note to self: This boy always pulls important stuff out of his butt last minute. Your adrenal glands will thank you for not worrying next time he procrastinates.

I drove Hugo to Rochester the night before the audition in the midst of a severe snowstorm. With much of Interstate-90 down to one lane, I stayed behind semi-trucks when I could because, in the rapidly accumulating snow, they laid down a set of tire tracks I could follow. What should have been a four-hour drive took more than six even though we did not stop once until we arrived at our hotel. In the quiet disorder of the unplowed parking lot, the cars looked tumbled about as though tossed like fistfuls of dice. I stepped out of the driver’s seat of our car and when I pushed on my spine and twisted, it sounded like someone opening a tent’s heavy-gauge zipper.

“Look,” I told Hugo while we were still driving through Pennsylvania, “It’s a long shot, both getting into Eastman and getting the money we’d need. But here’s the thing, it’s your first audition, so you can tell the rest of the schools that you auditioned at Eastman and they’ll know that meant you made it through the pre-screening. And besides, it’s good practice auditioning at a place like that.”

The next morning, the drive to the audition was as dismal as the night before. Snow still fell heavily and we were running late. Two minutes after I pulled onto the freeway outer belt surrounding Rochester, a cop pulled me over. And gave me a ticket. The Eastman School of Music fully occupies one city block in downtown Rochester. I pulled up to the main entrance and Hugo jumped out of the car. The moment he walked into the auditorium, he told me later, the dean of the school began speaking. By the time I had parked the car, walked over and found Hugo, the dean was gone, replaced on stage by a jazz quartet. When they stopped playing, the applicants were separated from their parents.

When did we each first feel it? I can’t say. Maybe immediately. Certainly when we met for coffee an hour after he had left the auditorium with the other students. Eastman is the place for Hugo. Nowhere else have I ever seen this boy—the one who daily pounded on the window of his daycare while sobbing when I dropped him off, who was horribly misfit in his Waldorf class only to feel abandoned when he transferred to our city’s public middle school for the arts and who eagerly wants to be done with high school—completely in his element. And although he was giddy, he remained centered, if not surprisingly relaxed, when his ability to read music was tested and faculty members interviewed him. More excited than nervous, Hugo took me with him to warm up in a small soundproof room with a piano. I rubbed his neck and shoulders and listened to him go through the three pieces he’d prepared. Then we waited in the green room.

“Can I see him perform?” I asked a graduate student after Hugo had been led onstage.

“No, but you can hear him through the crack between those doors,” he told me, pointing to a set of doors that were an exit from the first row of the auditorium. I pressed my ear to the crack only to jump back when the woman who had introduced Hugo pushed the door open on her way back to the green room. And for a brief moment, seconds only, I saw Hugo onstage, smiling and singing as if there was nothing he would rather be doing, which, on any day, there isn’t. How did he do? If he does not get into Eastman, then it was not meant to be for there is nothing he could have done better at any moment that day.

And This Year’s Movie Is…

Each year before purchasing my Valentine movie for the boys, I check for a film I love so much I have (without their knowledge) never let them see the more famous remake. And while I have a few, this film stars one of my all-time favorite actresses, Irene Dunne. She of crackling wit with Cary Grant in the films The Awful Truth and My Favorite Wife, both of which are said to have been largely improvised. Not a comedy, however, the movie I have sought for years, with no luck, as it remained unavailable on video or DVD, is the epic musical, Show Boat.

A success on Broadway, the Kern and Hammerstein musical boldly deals with issues of race, who can legally marry, and single-motherhood and is as timely today as when it was released in 1936. Reviving the role she played on Broadway, Helen Morgan, with her dusky voice, plays the “passing as white,” mixed-race star of the show boat. Morgan’s own life was no less tragic than that of her most memorable role and she died of cirrhosis five years after the film was released. But if that is not enough to invite anyone to watch this early film version of Show Boat, the chance to listen to actor Paul Robeson sing “Ol’ Man River” should be enough. Unfortunately, for a number of reasons, including Paul Robeson being blacklisted for his affiliation with communism, the original Show Boat was entirely unavailable from 1940 until 1983. I have only seen it twice myself at special showings in repertory theaters, the last time being many years ago. But with love comes faith and as I again looked up this film last week on Amazon, I hooted with delight to find it is now available on DVD. I ordered it immediately.

Not only to please Hugo, my next fledgling, I also ordered The Book of Life for even though this Guillermo del Toro production is a cartoon, like last year’s film, it is as much a movie about the love of family, friends, and place as it is about lovers.

Now, please, go find someone to hug. Or watch movies. Or both. Happy Valentine’s Day!

Two Years This Daughter

February 5, 2015December 18, 2015 whoopsiepiggle4 Comments

The first two years with a baby with Down syndrome are a lot of work, but then it all gets easier.

I have repeated that sentence, spoken by the caseworker from our county’s DD Board when Lyra was only a few months old, many times over in my thoughts. Lyra turned two years old in August of last year, and for the past six months, I have considered where Lyra is now, and also how our family has transitioned and developed with this fifth child, our only daughter who has Down syndrome.

Yet I have struggled in my attempts to write about this pivotal place where we find ourselves after long anticipation. Two months ago, I wrote “Two Years This Family” intending to immediately follow that essay with “Two Years This Daughter.” And I tried, writing two lengthy drafts that I promptly shelved. Instead, I found more enjoyment writing other pieces, which are also about Lyra, the reality of Down syndrome today and how our society, by in large, remains misguided in its understanding and treatment of people with Down syndrome. Those essays, like all my writing, did not come easily, but were the products of days spent at my desk, writing and re-writing until my brain, as it does after a long day of writing, would buzz like a nest of agitated hornets. That’s when I know to step away from my computer, consider a shower and head out for a long hike. A missing sentence or section or elusive phrasing will sift up, time and again, when I am deep in the woods, breathing hard as I hike up the hills of a two-mile trail in the metropark near our house, not concentrating, but lightly holding the piece of writing, as though it were floating like a cartoonist’s thought bubble, just above my head. It was good, hard work, resulting in essays that I submitted for publication rather than post on Whoopsie Piggle.

The problem with my previous attempts to write about Lyra at the age of two is the essays were boring to write and, thus, boring to read. It is my job, as a writer, to make the material engaging. But describing therapy sessions that began, in the case of speech, when Lyra was a few months old became a dry litany in my hands: we did this, and then this, and some more of this with a little added that, until here we are today, still doing some of the same, but not all the same and trying out some other things as well. Let’s skip the process for now and get to the results:

Lyra walks and
She talks and
She feeds herself and
She plays with toys, but more often disappears in the house and takes everything out of any cupboard, dresser drawer or laundry basket she finds within her reach that has been left unsecured. “I see it has been raining baby clothes,” Max says after Lyra has shoved, yet again, several of her shirts or Leif’s pants through the railings of the balustrade on the second floor of our home. Clean clothes purloined from the dressers in the adjacent bedrooms only to be flung onto carpeting coated in cat hair. Thanks, kids.

Yes, Lyra’s acquisition of early childhood milestones came later than for most typical children. But not all that much later and now, at two and a half, Lyra is pretty much like any two-year-old.

The difference lies less with our daughter than with us, which is what Lyra’s caseworker meant by “a lot of work.” Before Lyra, I had never broken down the mechanics of a baby learning to hold up her head, sit up, crawl or walk (gross motor skills). Neither had I considered that my babies picked things up by first using their fingers as rakes and later developing a precision pincer grip with their forefingers and thumbs (fine motor skills). Nor had I worked to train a baby’s tongue to move into the mouth and not rest on his lips (important for speech). I know how to drive a car even though I don’t know the first thing about the mechanics of automobiles. Similarly, I have long understood how to raise small children but my focus was on behavior and education, not how their little bodies went from infant blobs to motoring and motor-mouthed toddlers. They took care of that part of development themselves.

This begs the question, for me at least, how would Lyra have developed without interventions? I have no doubt that she would have learned to sit up, crawl and walk, but perhaps later. More importantly, I believe many of the interventions have helped Lyra learn how to move and use her body correctly, minimizing any overcompensation for her low muscle tone, or hypotonia, a hallmark complication of Down syndrome. And as a socially extroverted child, there is no question Lyra would be talking even if she had not had any speech therapy. However, she would be harder to understand. That is because we have spent over two years helping strengthen Lyra’s tongue and train it to stay, for the most part, in her mouth. The importance of tongue placement for speech was explained to us by Talk Tools founder and speech therapist, Sara Rosenfeld-Johnson, at the 2013 National Down Syndrome Congress convention. She told the audience to sit back in their chairs and lift up both legs so that they were parallel to the floor. She then asked us to move our legs, in tandem, from side to side, around in circles, up and down. After that, she asked us to scoot forward on our seats and try to do the same thing with our legs. What was simple when sitting back was nearly impossible when sitting on the edge of our seats. The same is true with tongues and speech. When positioned on the lips, a tongue is far harder to control and speech less precise than when a tongue is positioned inside the mouth.

There are many subtopics and nuances to Lyra’s interventions, such as the significance of music in Lyra’s learning or long-term breast feeding, that are important, sure, but those are perhaps best described in separate essays.

I wish I had worried less about the person my child would become and just enjoyed the baby she was.

I also regularly think of this quote, which I included in the essay, “Learning About Lyra,” more than two years ago. When I first read those words, just weeks after Lyra’s birth, in a book about children with Down syndrome, I knew I should do just that—stop worrying. And I also knew I could not. I had never had a child with Down syndrome. Before Lyra, I knew only one other child with Down syndrome, the daughter of an acquaintance, whom I met once, when she was a baby. After Lyra’s birth, I began to meet other families in the area through our local support group, The Upside of Downs. But equally as helpful has been a closed Facebook group for mothers of children with Down syndrome who were born the same year as Lyra. These support groups helped in the early days as we learned what we could expect for our daughter both immediately and as an adult. Yet I would be lying if I said I have not found myself, on occasion, comparing Lyra to other babies with Down syndrome who acquired developmental milestones before she did.

It turns out what has most helped me to stop worrying about Lyra is Lyra herself. As she moved out of infancy, her personality revealed itself, as any baby’s does. She’s an outgoing, curious child who loves music, dogs, cats and her brothers. Five-year-old Leif now complains that Lyra tackles him and all too often Lyra yells when he pries toys or cookies out of her hands. It’s no different than the way my first two children interacted when they were five and two.

Lyra, my youngest child, is my girl. And she’s Max’s girl. She’s her brothers’ sister and a friend to her mates at daycare. Two years after her birth, all that Lyra is has normalized. Her Down syndrome, her aphakia and contact lenses are no longer novel to us. Just as having a fifth child who is a daughter (a daughter!) has become routine. (Okay, so maybe the daughter part still tickles me like getting a long-desired present.) The point is we are a family of seven, each of us having different personalities and abilities. Claude, who is quiet and steady except when he’s excited, now writes fiction with content more intense than expected from someone so young. Hugo is confident, if not self-absorbed, demonstrably affectionate and sings like an angel. Jules, whose name means youthful, has the oldest soul of us all. He cares for everyone and everything while quietly carrying deep hurts and anger. Leif is like Hugo: bombastic, demanding and sharp-witted. Max, with his implacable patience, may have missed out on the thing he does so well, being a dad, had we not tumbled into his life when he was in his early forties. And I, who spent much of my childhood alone and lonely, never lack for company. Or love. (Could we queue in a little Sister Sledge here, please? You know the tune.)