The Enrichment Center

Last night we went to an art opening and concert just down the hill from our house at The Enrichment Center. Adults with autism, Down’s Syndrome, and other physical and mental disabilities spend their days at The Enrichment Center, painting, making music, and playing. The world of The Enrichment Center is one of the wonderful gifts we have opened since Errol was born.

One of the first people we met at last night’s opening was James. James is probably around 30 years old (it’s hard to tell), no more than five feet tall, walks with a wobble, and talks like a kid. He was wearing a suit and tie, had a bouquet of roses in his arms, and had a shit-eating-grin on his face. After all, it was his art opening and the walls of the Enrichment Center’s art gallery were festooned with his colorful paintings of houses. In the thirty or so paintings James had made, his iconic house was always the same: a rectangle with two windows, a door, and a pointy roof on top; but the wonderful colors changed in each painting; from red to blue to violet to yellow. James’ powerful paintings would fit right into a gallery next to a Klee, Miro, or Twombly. James was having the time of his life and kept hugging me every time he reintroduced himself.

James and Errol weren’t the only disabled people there. Right after we arrived, a van full of Enrichment Center clients pulled up and the riders, with great fanfare, spilled into the center. They shuffled into the gallery, took a quick lap, and made a bee-line for the food and drink (just like at any opening). I introduced myself to most of them and made conversation (it certainly wasn’t more awkward than at any other cocktail party), but I realized that I didn’t have much experience talking to disabled adults (I’ll have plenty), and that I didn’t quite know how to do it. Should I speak to them like I was speaking to a friend? A child? Like I was an ESL teacher? A bartender? Or should I talk to them just like I talk to anybody else? Not that there is even such a thing as a typical disabled person (the range is staggering), any more than there is a typical, typical person. Complications make life more interesting, and I must have been doing okay, because everyone was much more concerned with the snacks than with my tone of voice, and they all seemed to be having a great time. After all, it was their big night.

After everyone had viewed the neighborhood of cheery houses, the Enrichment Center Percussion Ensemble took the stage. I had seen the members of the ensemble awkwardly struggling through the room before their performance began. But as soon as they took their places on stage and the first notes rang out, they were transformed into a deliberate, confident, focused, and tight band. As they played, they weren’t happy or sad, laughing or crying, they were rooted in that place - completely consumed by their music. And so were we. The music was a haunting swirling, miracle of guitar, vibes, and drums marching together into the unknown. I didn’t want it to end. It did.

These were Errol's peeps, and the place was full of excitement and magic. That wonderful night was probably the first time I’ve been in the minority as a person without a disability, but it probably won’t be the last. As sweet Errol has proven, over and over again, in so many ways, we typical people are the emotionally disabled ones. After all, I wasn’t dancing, laughing, and grinning the whole time.

Errol in his stander on New Year's Eve 2007

Errol loves his stander, especially when we spin him round.

Flat as a pancake

The iron is already doing the trick, and just 24 hours later, Errol is markedly less puffy and rashy. Cary just gave him a cool little hair cut, and Errol looks fantastic. His descent into anemia was slow, and it's only now that he's back to his old self that we have realized just how much he had declined. And boy is he back. Errol is wiggling around like crazy and hooting like mad. At this rate, he'll be walking by morning. It's great to have little Earl back again. We'll all be taking iron from now on.

Pillsbury Dough Boy

I think we have finally tracked down the cause of Errol’s month and a half long puffiness. Our amazing medical sleuth, Dr. Hunsinger, thinks that Errol is slightly anemic, which, when combined with his heart issues, makes him as puffy as the Pillsbury Dough boy. She gave me a highly detailed technical medial explanation of how iron helps oxygen bond to blood molecules. I’ve heard of blood. Now what’s this molecule thing again? I’ll translate her explanation into more understandable language. “Earl’s heart don’t work so good, boy needs iron lest he look like that ol’ cat when little Buddy put that hose up his behind.” The best natural way to get iron into the system is by eating prunes or calf liver (every family’s favorite), so we’ve opted for the unnatural way: supplements. We chose the Walgreen’s children’s iron supplement that comes packaged with the cryptic name, “My Kid’s Iron.” We hope that the brilliant Doctor Hunsinger’s is correct in her diagnosis (she always is), and we can’t wait ‘til the supplements kick in, and we have our sweet little anemic Earl healthy and with all the puffiness ironed out! Thank you Doctor Hunsinger.

Curveball

For the past month and a half, Errol has presented us with an anatomical puzzle. His feet and hands have been swollen and just this past weekend he’s developed what looks like a bright red rash over much of his body. Over the holidays, we’ve circulated through the rounds of specialists trying to figure out what is causing Errol’s extremities to become what is known in medical jargon as “puffy." Our boy’s been seen now by scores of extremely smart people with the very newest technology, but despite their best efforts, no one seems to be able to figure out why the Little Man is not himself.

Tonight we took another long drive out to the county to get a fifth opinion from Errol’s extraordinary pediatrician, Dr. Susan Hunsinger, whom we trust completely. Errol is less than two years old and already his medical chart, at Dr. Hunsinger’s office alone, is bigger than an unabridged dictionary. As Curveball’s mother said, “By the time he’s twelve his chart is going to reach the ceiling.”

Everyone should be so lucky as to have a doctor as wise, brilliant, and compassionate as Dr. Hunsinger. She knows more about what makes Errol’s little body tick than anyone, although she is always the first to say that we, his parents, know him best. She uses her encyclopedic knowledge, her incisive mind, and her unending compassion to heal our son and family. We are very, very lucky to have her in our lives.

Most of the time, I’d rather have bad news than no news. But right now, no news is what we have. The French philosopher, Montaigne, advised that when we are concerned about something it is best to imagine the outcome to our worries as the worst case scenario. He argued that reaching the outer limit of possibilities will actually put our minds at ease, and that whatever outcome we face can never be worse than the worse case scenario. After all, if we expect the worst, we will rarely be disappointed.

While Montaigne’s prescription has eased some enormously difficult moments in my life, in general, I’d rather have my hopes dashed, than to live without them. And right now, it’s hard to imagine a worst case scenario with Errol, because, at the moment, we don’t even have a scenario. Which is exactly why his prescient cardiothoracic surgeon, Dr. Hines, named Errol “Curveball." The great anxiety we have always felt with Errol is the fear of not knowing. With his syndrome, we don’t know. With his puffiness, we don’t know. With his future, we don’t know. It’s hard not knowing so much. And maybe that’s what keeps pulling us back to the moment, where he is unfailingly sweet and fun to be with.

But despite the fun, the smiles, and the laughter, we always want to know. It’s our nature.

Happy New Year

Today, we started our New Year with a family walk around the neighborhood. As we rang in the new year, we talked about the many things we are grateful for. Every new year with Errol is a gift, but this year brings risk. This summer, Errol will have his third open-heart surgery. And while each of the three surgeries gets less risky, we grow more attached to him, and have more to lose.

A neighbor came over the other day, took a look at Errol’s stander and asked, “What is that?”
Quick as a wink, Owen replied, “That’s a stander!” as if everyone had a yellow metal reclining gurney in their living room. Of course, for Owen, it is normal, and so is having a brother like Errol. And I hope we can keep it that way, but surely, as they both grow older, Errol will seem less and less normal. But so are champagne, truffles, and Venice.

Errol has grown up, so much that he is starting to be mischievous (which, with him, is a good thing). How can a disabled baby be naughty? you ask – by flipping! Errol has finally discovered the ability to flip over from his stomach onto his back (most kids do by six months, Errol is 20 months) but we are thrilled Errol can do it at all (and hey, this isn’t the Olympics). Errol’s flipping is 99% wonderful, and 1% problematic – he can’t seem to stop. We put him on his stomach, and before we know it, he’s on his back. We turn him back on his stomach and before we can turn around, he’s on his back again, grinning ear to ear. This wouldn’t be a problem if Errol could fall asleep on his back, but he can’t and within a few minutes of bliss, Errol’s smile turns into a cry (yes, he cries). And we have to keep flipping him every few minutes until he finally gives up and goes to sleep. All in all, this is a great problem to have, and I have to admit that it’s fun to see Errol with a naughty glint in his eye, ready to thwart us. I’d love to have more of these kinds of problems, and if we’re lucky, one day he won’t want to stop walking and talking. Keep flipping, Little Man.

Errol is really growing up (and around and around) and I know that this is going to be a great year for him. He’s doing so many things we never dreamed he’d do, which just makes us all the more scared for him. I can’t wait ‘til the summer is over and done and we have our boy back.