Merry Christmas from Errol

Guilt

The four of us had a great Saturday. Just our little, unusual family. We drove to the mountains to go Christmas tree hunting. We bagged a six-footer. The people of Alleghany County (where Cary and I got married 13 years ago) tend to be sweeter, gentler, more likely to make eye contact than even the flatlanders down in Winston-Salem. The cocky young lumberjacks with their military haircuts, Carhartt work clothes, and tan boots walked up to Errol, patting him on the head or shoulders saying, “hey there little feller”. They probably don’t get a whole lot of not quite normal looking kids in all terrain-wheelchairs prowling the mountains for Frasier firs, but they didn’t seem to mind. They made physical contact with our little boy. Maybe they were taken off guard. Maybe they were drunk on the mountain air. Maybe they figured all the city slickers had wheelchairs these days and didn’t know Errol was disabled. Maybe they didn’t care. Maybe it made them care. It doesn’t really matter. They were kind to our boy.
Most people are; it’s just surprising sometimes who goes out of their way to touch an untouchable.

On a high mountain ridge, looking down on hundreds of trees lined up like soldiers, we picked our tree. Errol cried when they started to saw to cut our tree. The tree was felled anyway. Errol stopped crying. The tree choppers lashed the tree to the top of our car. I asked one of the young men if the tree would stay put for the drive home. He told me to take it easy on the way home. I told him home was 60 miles away, on the interstate. He thought for a second. They put another rope on the tree and tied it tighter. Now the tree and the car were headed wherever they went together. We implored the gods to see us and the cars in our wake home safely. We drove home quickly. We started a new family tradition that sunny day; it was a day we didn’t want to end.

The next day was rainy and cold. We wanted to read the Sunday paper, but felt like we should hold Errol. We felt guilty when we ate pancakes and Errol only got mushed up bananas. We felt guilty that we could remember, talk about, and savor the perfect day before, that fell so quickly from Errol’s mind.

In parenthood, guilt is never ending: we should play more with Owen, he needs be independent; we shouldn’t spoil Owen so much with Christmas presents, he really would love that Tupperware set; we should have given Owen a normal brother he could play with.

So far, the guilt is unending, and like our children, it grows bigger every day.

With Errol the guilt is darker. We worry he won’t walk, he won’t talk, he won’t remember anything. When we are at home on a Sunday afternoon and Errol is lying on his mat we know we should pick him up and work on his speech, or his sitting up, or just play with him; but we’d rather just do something fun like the laundry or the dishes. Life is a balancing act. It’s especially hard to balance heavy things.

We’ll always have that blissful Saturday, I just hope Errol knows it.

Marriage

We were driving to the mountains to cut down a Christmas tree when Owen told us about his plans for the future.

Owen: Are Ken and Rick married?

Mama: Ken and Rick have lived together a long time, and they love each other, but our state doesn’t allow them to marry.

Daddy: Who will you marry, Owen?

Owen: I don’t know.

Daddy: You could marry your friend, Sophia.

Owen: No, Daddy. Not Sophia.

Mama: What about Noel or Ireland?

Daddy: You could marry Sophie, or what about, Roman?

Owen: Roman! That’s silly, Daddy. I’m not gay!

Daddy: Who would you like to marry, Owen?

Owen: I’m not going to get married. When you and Mama get old and die, I’m going to live here in the house with Errol.

Pie Eating Contest

Errol’s mother and I go to great lengths to be happy. Errol doesn’t have to go anywhere. He’s happy right where he is.

Which is great; and makes me worry. Errol is always so happy right where he is that he doesn’t try to go anywhere else. Which may just be the point, or maybe not.

19 millennia ago, the people who lived around modern day Lascaux, France painted their lives on cave walls. For over twenty five hundred years, these Paleolithic folk painted their world in exactly the same style. Archeologists believe that these ancient cave dwellers must have achieved a kind of cultural equilibrium, and were so satisfied with their lives that for generation after generation, they did not want to change.

This story says as much about us as them. As impressive as our pace of change is, it also shows that we moderns are pretty damn dissatisfied with our lot. And while we can point to the many longer years we live today (I’ve already doubled the average Paleolithic life span), we don’t always seem to have fun with all those extra years we get. Modern life is like a pie eating contest where the prize for winning is more pie.

Errol has for most of his life been remarkably, dare I say unbelievably, satisfied with everything. “How’s your milk, Errol?” Smile. “Would you like to read a book, Errol?” Smile. “Did the doggie just vomit on your head, Errol?” Smile. With Errol, just about everything has been not just fine, but great! Sometimes, as Errol laughed his way through his first two and a half years of life, I found myself wishing he was just a wee bit less satisfied, and a tad more inclined to change things: crawl, talk, walk, complain! Recently, finally, thankfully, at long last, Errol has been showing signs of dissatisfaction. He’s been flipping and flapping around more, screaming when left alone, wiggling his way across the floor, voting for Obama. In short, Errol is less content. Which is a good thing, if it leads to his crawling and talking. But if the goal is contentedness, then perhaps he was better off last year when he was ever happy. What would those cave dwellers make of us? And what would they think of Errol, laughing as the world swirls around him. In a perfect world, Errol would be pissed off just enough to learn to walk and talk, and still laugh at my pirate jokes.

Jousting

Two years ago, when Errol was diagnosed with mental retardation we cried and cried.

Errol’s favorite piece of therapeutic equipment sits atop four wheels, has a tight turning radius, and is called The Bronco. Errol is riding his tricked-out Bronco across the living room floor. He has a massive grin on his face and is laughing at the top of his lungs. His unsuspecting brother waves a foam sword at Errol, who rolls towards him at full speed. Owen is laughing too; he doesn’t yet see that Errol has a foam sword of his own wedged under his arm. It’s pointed right at Owen. They joust. Errol wins again.

Errol can’t talk, he can’t walk, he can’t even sit up by himself. Sometimes when I’m feeding Errol and he bobbles his head and gets food all over himself and me I think, “why can’t you just eat like a normal kid?” (Not very empathetic, you might rightly think. As if Errol really chose to be wheelchair bound!) Sometimes I see other kids his age running around, playing, and I think that Errol will never have these simple pleasures.

We went to a play tonight. Errol laughs at the funny parts and he laughs at the serious parts. He laughs right through the whole damn play. Errol is ever more connected with the world outside him. He keeps swiveling his little head around, mid-laugh, to see his mother, then me, to make sure we get the joke. We do (Hamlet’s soliloquy was hilarious!) When Errol thinks something is funny, it is.

Errol is mentally retarded, but now we just laugh and laugh.

Obama Wins

Obama Wins. Yes we can! Si se puede! Errol is so excited. We all are.

Listening To Errol

Whatever Errol is thinking about must be pretty good because he smiles and laughs all the time. I’d love to be able to get inside Errol's little brain to see what exactly is so damn funny. The easiest way to find out what Errol is thinking would be to ask him, but since Errol’s words are elusive we’ve started teaching him to answer yes and no questions with his hands. Whenever we have a question we present Errol with two large plastic cards, one with a yellow smiley face, another with a picture of Sarah Palin. You can guess which is yes and which is no.

We put the cards down right in front of Errol and ask him simple, yes or no questions like: do you want to eat? Would you like more? Do you support the Bush Doctrine? If the answer is yes (and mostly it is), he touches the smiley face, if the answer is no, he reaches for the Governor.

Like all of us, Errol has desires, tastes, and preferences, and slowly by slowly, he is letting them be known. Do you want bananas? Smiley face. Would you like to take a bath? Smiley face. Would you like to buy some stock in Lehman Brothers? No. (Maybe we need another card for hell no! A picture of Dick Cheney, perhaps?)

We haven’t gotten up to complicated questions about the origin of the universe, free will, and human nature, but knowing what Errol wants for dinner is a start, and with enough time, hopefully the small questions will open into bigger ones. It’s got to be frustrating not to be able to express your most basic desires and wishes, and I think that Errol is enjoying his newfound power. (He refinanced our home the other day!)

We just watched a gorgeous and sublime film, The Diving Bell and the Butterfly, the true story of an editor of Elle magazine, stricken with Locked In Syndrome. The editor wakes from a coma to find that he is paralyzed from head to toe, and can no longer speak. He reacts in horror as he realizes that there is no way he can communicate his thoughts to his caretakers. Eventually he learns to communicate by blinking his one functioning eye: once for yes, twice for no, three times for cream and sugar. Through a painstaking process he is able to write a book, telling his story, one blink at a time. In a beautiful passage, the author writes that with his old life taken from him, he must now live in his memories and imagination alone. I have read that when a person loses a sense, (their sight, for example) they often report that their remaining senses become more acute. Far from being limited and reduced by his immobility, the author’s rich and fertile mind is unbound.

What is Errol thinking that he is unable to share with us?
What thoughts are running through Errol’s sweet little head?
Is there a world of imagination and memory in his brain that we just aren’t patient, smart, enough to get to?
Is something funny, or has he just been smoking something?
Will Errol’s limitations make him stronger in ways we don’t even know?
Will Errol be able to share his inner life with us?
What’s so damn funny, anyway, Little Man?
Whatever the answers are to the big questions, it’s wonderful to have this new way to know our beautiful son.

Oh, it’s not really a picture of Sarah Palin. It’s a big red X. Same difference.

Errol Goes Pro

“Errol had a great day at school today!” his teacher said on Tuesday. Other people noticed the change in Errol, too, and commented on how well he was doing, how active he was, how he should run for vice-president. (If Palin can, why not Errol?) The Congressional Budget Office estimates that every time Errol gets acupressure he gains two month in development (at this rate, he’ll be on the PGA tour by 2011) and I think they are about right. Since he’s started his therapy, Errol has started waving (good), bucking out of his car seat (not so good), is more vocal (very good), and (unfortunately for him) has gained enough muscle strength for me to throw him up in the air (don’t worry, I catch him!) Because of Monday’s acupressure session, by the time his public saw him on Tuesday, Errol was full of vim and vigor and was shooting about 3 under par. And thanks to his generous acupressurist/caddie, Sarah, Errol will get a free acupressure therapy session every week. Come visit Errol and see the change for yourself. And bring your clubs.

Errol Eating

Thanks to the wonderful work of Errol's teachers, Susan and Tamara, Errol can now eat his milk all by himself. This is a huge milestone and we are so grateful to his teachers for all they are doing for our big boy. Next stop, pizza! As you can see, Errol is pretty proud of himself, too.

Errol's new chair

Errol has a new chair! Hooray. His new chair gives him support and mobility, but most importantly, it gets great gas mileage. Errol's wonderful new ride has lots of cool features: rear defrost, surround sound, eject button; but the best function is a lever that lets us turn Errol around so that he faces us when we push him. He loves it and so do we. Here's a video of Errol in his sweet new ride. I think you'll see how much we all love it.

Acupuncture update
Since Errol's acupressure session on Monday, three separate people have commented on the remarkable progress Big Errol is making. None of these people knew about Errol's acupressure treatments, but they all agreed that he seemed dramatically more strong, well developed, active, liberal, and generally with it. It's hard to pin down exactly what's changed in Errol, but we feel that, the acupressure is at the heart of Errol's transformation. See for yourself.

AcuErrol

Like most two and a half year olds, Errol has started seeing an acupuncturist. There’s not actually any puncture yet, just pressure, which is just fine with Errol.

It started like this. A few years before Errol was born, I threw my back out. As I writhed around in pain, a friend suggested acupuncture. After I stopped laughing, I told my friend that I didn’t believe in such quackery, and that I’d get better before long. A few weeks later, still unable to touch my knees, I decided that acupuncture (needles or not) sounded like a great idea. I stumbled into the acupuncturist’s office, and one-hour and one released qi (“chee”) later, I walked out of the office, on top of the clouds. An acupuntureholic. I don’t know how or why it worked, but those little needles worked their magic.

By age four, if children can’t sit up on their own, they generally won’t ever walk. Errol is two and a half, and he’s not sitting up. We’ve decided to help move things along. So a few weeks ago, Errol launched his maiden voyage to our friendly neighborhood acupuncturist, Sara Gerard.

Acupuncture worked for me, but I wasn’t sure if it would work for The Little Man. After all, lots of things that work for me don’t for him (and vice versa). I went with hope but also doubt in my heart. Sara spent a long time looking Errol over, holding him, and asking us questions. Her precision and compassion was reassuring, but could the Arts of the Orient really make our wee man better?

Sara slowly started to work up Errol’s legs, naming all the different meridians and systems as Errol kicked and squirmed in pleasure. Was she just making this all up? Had we lost our minds? Sure, the leg bone’s connected to the knee bone, but were those pressure points on his calves really connected to his liver yang?

I am a hard boiled materialist and skeptic, and I entered our session unconvinced, but as Sara worked, my skepticism dissipated, as I saw her effect on the little man (and, vicariously, on all of us). As her fingers danced up and around his spine, Errol stopped his happy thrashing and became serene and intensely focused. A certain magic enveloped the room and Errol seemed transfixed by the energy that was flowing into him through Sara. Energy is an amorphous and overused word, but since I don’t have more precise language to articulate what was happening, all I can say is that the room was full of a tremendous positive energy. In fact, while Sara was working up Errol’s spine towards his head, the hair on my arm stood up as my whole body started to buzz (sort of like in college). Whatever it was that happened had a profound effect on our emotional and Errol’s physical wellbeing for a number of days. In fact, over the next few days at school, a number of Errol’s entourage commented on how healthy and active The Little Professor was.

Errol had his second round of qi releasing and spirit cleansing, and it brought him right back to his stimulated and healthy self. And whether it is making a long-term difference in his life, Errol loves going to Sara, and so do we. All we want to do is speed Errol up and slow time down. Easy! Eighteen months to go. Acupuncture, here we come.