As I've mentioned only a bazillion times, I'm taking an online creative non-fiction writing class this summer. It's interesting, fun, and challenging...and I am so thrilled to be doing something that feeds my soul. My favorite days are ones I can escape for a few hours to my favorite cafe to read the assigned essays and try the writing exercises. Here's what happened when I found myself not alone, but with Oscar, in a cafe on the day the "Character Sketch" exercise was due.
The cool breeze on this foggy morning is a relief after a few days of uncharacteristic heat here in Berkeley. I’ve exchanged my silver flip flops for my scuffed silver flats and donned frayed jeans and a navy t-shirt. Oscar is wearing his orange fleece, the one he insists on every day. As usual his jacket is zipped all the way up and his hood is tightly cinched around his sweet, though noticeably inexpressive, face. I didn’t check, but if I had to guess I’d bet he is wearing at least three t-shirts underneath. Some days he wears two pairs of underpants, or two pairs of socks, and every once in a while I catch a glimpse of his favorite blue and green striped pajamas peeking out from under his pants. “Remember to take the old clothes off before you put on the new”, I remind him. “Oh, I forgot”, he always replies. But he didn’t forget -- enough is just never enough, whether it be food, plastic zoo animals, markers, or, apparently, underwear.
We’re at my “office” – a café in Berkeley with foamy lattes, a large outdoor patio with clangy metal tables and generous umbrellas, and a smaller indoor space with wooden tables and repurposed dinged up church pews providing seating along the walls. We sit next to each other on one of the shorter pews, each with our very own small round table on which to work. His dark blue backpack is partially unzipped revealing two Magic Treehouse books and the phonics workbook I packed for him. I have visions of the two of us working companionably for an hour or so, me on my writing, he on his phonics, while Ruby is in school and Abe is at camp. He, though, keeps asking when I’ll get his snack and when we will leave, starting a few moments after we arrive. Kids with Prader-Willi syndrome don’t do well with uncertainty. “Mommy always has a plan, right Buggy?”, I say, using my affectionate name of the month. “You’ll have your snack here, we’ll do some work, and then we’ll head to the market.” “How long?” he asks again, looking up at me. His brown eyes, round and deep like those of a fawn, distract most people from noticing the blackheads and tiny red bumps that cover his forehead, nose and chin. At eight he is already showing some signs of puberty.
I set up my computer and check a few emails while I wait for the coffee line to go down. The barrista is chatty today and the line keeps growing, as does Oscar’s impatience. He clears his table off, quietly refusing to read or do any workbook pages, both favored activities. He gets up to twice to check on the line. “It’s dow dow dow down to four people, Mom” he reports, his face contorting with the effort of getting the words out. Waiting, especially for food, is not his strong suit.
I finally haul myself into line, leaving Oscar at his table, within sight, and return a few minutes later with my breakfast and his snack. “What am I having?” he asks, anxiety lacing his words. “An egg and some baguette” I respond. “Oh, no milk? Why no milk?” he wants to know. I used to always get him milk when we came here, but ever since he and Ruby got diagnosed with hypophosphatasia (soft bones) as well, we’ve had to cut down on his calcium intake. It’s just another wrinkle in our family’s already complex food situation.
With his snack finally in front of him, he relaxes and takes a bite of the baguette. “Mom, why why why why do you just keep looking at me?” he says with a smile. “Cause you’re cute”, I reply. “Well, stop!” He’s smiling, but he means it. He turns away from me now, and the hood of the orange fleece masks the back of his head – one leg twisted onto the bench and the other in a half kneel as he continues to savor his snack, privately. He has eaten the rubbery white of his hardboiled egg and is leaving the greenish yellow yolk behind for now. With his small slightly crooked index finger he pokes each remaining toasted crumb, and licks it off his finger…crumb by crumb. The look on his face is one of ecstasy, as if he was savoring his very first bite of chocolate after a long period of deprivation. Sometimes, he “forgets” and goes after some of the crumbs that have fallen onto the grubby brown laminate table. “Nonononnononono” I scold. Caught in the act, he visibly startles, and mutters “Oh yeah, I forgot.” I only have to remind him twice more.
When all the crumbs are finally unearthed, poked, and licked from between the bits of shattered egg shell on the small white plate, he returns his attention to the now crumbled yolk. He does not like the yolk, but it is there so he will eat it. I know this. But he does it slowly, as if I am forcing him, taking breaks to fill his plastic cup with water from the nearby brown jug. I’ve given up hoping he will not finish every last morsel on his plate, just as I’ve stopped expecting him to remember not to drink the salad dressing after the lettuce and tomatoes are gone. People with Prader-Will syndrome don’t ever feel full and most experience constant hunger. Since he was a baby we’ve been following a strict routine around food. Oscar only eats what we give him, when we give it to him. No amount of whining or crying or tantrumming will change our approach. He has come to accept the routine, but he certainly makes the most of every meal.
Occasionally, while working on the yolk, Oscar buries his head in the corner of the pew, his feet poking out behind him awkwardly. He closes his eyes for a moment and then returns to the yolk. Ten minutes later all that remains on his plate are the white bits of shattered egg shell.
Relieved from the call of the yolk, he now seems energized and pulls up his blue backpack and gets going on his phonics workbook. Finally we are where I’d envisioned. Hard at work, side by side. I sneak one more peak at my beautiful boy. He sticks his hand up to say “STOP!”, but he can’t keep that smile from escaping and we dissolve into giggles, together.
My aim in the sketch was to portray some aspects of Prader-Willi syndrome to an uninitiated audience. While I think I'm on the way to achieving THAT goal, it doesn't feel like a complete picture of Oscar. So until I write the rest, here's another side of my middle boy, proud of the bird exhibit he built with his kapla blocks.