Eight(een) Months Old

It’s my contention that we all have two ages: our numerical age, mine is 39, and our true age, I’ve been 23 for years. Today, according to Errol’s brilliant pediatrician, Dr. Hunsinger, Errol, who is officially 18 months old, has now reached the developmental milestones of an eight month old. Which is reason to celebrate. Sometimes when Errol was a wee baby, it seemed like he would be stuck in infancy forever. Now, Errol is making great strides (not literally - yet), and is surprising us all the time. Friends who haven’t seen Errol in a while, can see the difference right away, and remark on what a big boy he’s become (23.3 pounds). And, in so many ways, Errol is acting like a big baby now: he can transfer toys from one hand to the other, use both hands at once, scoot around on the floor, turn on his side, babble, and do on-line checking.

It’s a great joy to watch him grow up. A thrill.

With Errol, we’ve gotten pretty used to knowing that we don’t know what’s next (which is more true of life than we’d like to admit). We certainly can’t assume that Errol will always be ten months behind his numerical age, or that he might even catch it one day, but it’s nice to know he’s growing. One thing we do know for certain about Errol is that he is a beautiful, happy, radiant boy, who brings joy wherever he goes. And that’s one thing about Errol that I doubt will ever change, no matter his age.

Flow

I sat down to read a book with Errol the other day. Errol is a full body reader. His reads with his whole body. I’ve never seen anyone happier to read (or, really, happier to do anything). Errol’s body shivers with excitement and he starts to flail his little arms when I get out a book (he especially loves Middlemarch)! There is no confusion about whether Errol is happy or not.

But why is he so happy?

Is it just chemical?
Does our knowledge of time (which he doesn’t share) make us unhappy (always counting down….)?
Is he happy because he doesn’t know he will die?
Is it because he only knows the moment?
If we are very lucky, sometimes, ever so rarely, we enter into an action that is so fulfilling, so engrossing that we lose ourselves, lose track of time. This is called many names by many people. I’ll call it flow. Sometimes it is the sublime that takes me into flow (Chopin’s Etudes, a mountain walk), other times it is the most quotidian of things (washing the dishes, cutting garlic), and I am gone. It is as if I have stepped outside of myself and of time and into the river of eternity for just a moment, and then I am returned to myself and the oppression of time. Errol lives, mostly, in that flow. We envy him for it and are grateful to him for bringing us along to that sacred moment.

Memory

I just read a wonderful article by the esteemed author and neurologist, Oliver Sacks, about a man who suffers from severe amnesia. Here’s the link http://www.newyorker.com/reporting/2007/09/24/070924fa_fact_sacks
There is also an audio story about memory which you can find at WNYC’s web site
http://www.wnyc.org/shows/radiolab/episodes/2007/06/08/segments/71874

Sacks writes about the eminent musician and musicologist, Clive Wearing who when struck by a brain infection – a herpes encephalitis – was left with a memory span of only seconds. Every few seconds, everything is new to Clive. The most remarkable thing about Clive’s story is that despite his memory being wiped clean ever few seconds, he has retained his sublime ability to play and conduct music. It is the one thing that can keep him in the moment and delay his memory from being reset. The music, it seems, propels the moment on and on.

Errol is very different from Clive in many ways, but Clive’s story made me think of him. Errol has very limited memory, which makes it difficult for him to remember anything he learns (not just numbers or letter, but basic things like, walking and talking). Many of the advances Errol makes are ephemeral. One step forward, two steps back. He said “hi” last week (to great fanfare and acclaim), and yet he really hasn’t spoken since. We learn a lot of things over and over again.

But mostly, as I read about Clive playing his beloved music, inhabiting one long, seamless, beautiful moment, propelled along by the song, I was struck with thoughts of happy Errol. We went to the park this evening and while Owen made a city in the sand, Errol swung. He laughed and smiled and laugh as we swung him forward, and as he got to the apex of the arc of each swing he would let out a shriek of delight, and his little legs would shake with pleasure. Errol lives in a long beautiful song which makes all of us happy, beyond delight.

Clive’s story is, indeed, sad, and part of Errol’s is too (his weak memory may very well preclude his walking or talking – although we will do all we can to help him). But, oh, to be able to inhabit that rapturous moment the was Errol does is the most precious and elusive of gifts.



*This picture above is Errol at school last year. He's in a contraption that helps him learn to use his legs. If Errol walks and talks (his teachers would, in their constant positivity, say when) it will be because of the miracle workers at The Children's Center. The photograph in the foreground is not Osama Bin Laden, but who it is is beyond me.

The Eyes Have It

We could tell early on that Errol had some vision difficulties. We drove to Charlotte (Cary, not Errol) to see a pediatric ophthalmologist (the patients are young, not the doctor) who told us that Errol was blind and that there was nothing we could do about it (what a cruel diagnosis, it's hard to be left without a shard of hope). Spend one minute with the little man and you'll see that the doctor was very wrong. Errol can see; not across the room, not down the hall, but he can see, and he loves it. Errol’s eyes are in constant motion, darting from mama, to the daddy, to the dog’s tongue, then back to mama. Wave at Errol, and he'll wave back; make the sign for "eat" (we’re all learning to sign) and his whole body will convulse in a huge full body smile; show him a picture of Larry Craig, and he'll start to cry. Errol doesn't have great vision, but he has vision, it's getting better, and there is something we can do about it (like get a second opinion). We've been to another ophthalmologist who confirmed our parental diagnosis that Errol can, in fact, see. Sometimes the most basic things are the nicest to hear. And although I could have told you, and Errol could have shown you, it was nice to hear a doctor say it. Come hold him for a few minutes (Errol, not the doctor), and you'll see for yourself. Just don’t mention Senator Craig.

Skating

One of the biggest payoffs in parenting is doing all those things that you loved doing when you were a kid, that you could never get away with as an adult without your children as cover. I’m talking about ROLLER SKATING. It would look pretty sketchy for a 39 year old man (that’s me) to just show up at a roller skating rink on a Friday night, solo. Make that really sketchy. That’s why I had Owen and Errol.

I hadn’t been roller skating in about 23 years until this last Sunday when Owen took us to his first skating party. There’s a lot of things I haven’t done in 23 years; collecting baseball cards, drinking RC Cola, smoking crack, and roller skating. It was at Skate Haven that I began my descent into my past. Skating isn’t what I remembered (I’m probably not what it remembered either), and it’s a little harder to skate with a four year old clutching your legs and screaming, “I’m scared, Daddy! I’m scared, Daddy! Go faster!” And we did, and he was scared, and my back ached, and my arms burned, but he was also happy, and we kept going, around, and around, and around, and we both loved it.

Surprisingly, the highlight of the party wasn’t catapulting around a skating rink with a screaming 44 pound, four year old, inches from a $500 co-pay, it was skating with Errol. When did Errol learn to skate? You might scream, gentle reader. Why, from his skate therapist, I might reply. But this was no ordinary skating. Let’s just call it “skate therapy”. Since four wheels are no worse on the floor than two, the proprietors of Skate Haven (why would you do that to yourself?) allow strollers and wheelchairs on the rink. So there we were, the two of us, hurtling around the rink at full daddy speed with the lights flashing, the music pulsing, and the wind blowing in Errol’s hair. I couldn’t see Errol’s face, but I heard from all the parents and paparazzi that Errol had a huge grin on his face all the way around the rink (or might that have been a look of fear?).

So now I know one more thing from my past that is best left in its place, and one more thing to add to Errol’s list of favorites. I’m sure it won’t be our last trip to the skating rink, and that’s just fine with all of us.

First Words

Errol is on his way. Today he passed through a huge hurdle. He said his first word. “Hi!” and he is as proud as I am. It’s easy to hear things you want to hear, but I think anyone would have understood Errol’s “hi!” I’m trying not to get too carried away (I’m floating on air), but spoken language will dramatically open Errol’s life.

We’ve all been working hard with Errol’s language. He gets constant help from his speech therapist, his teachers, both his parents, his brother, and the many, many people that hold him and talk to him. Everyone wants him to do well, and I can’t help but think that Errol knows and feels that.

I’ve been working hard to get Errol to talk, mostly by imitating Errol. I’ll call it imitation therapy. Every time Errol squeaks, I squeak. Every time Errol hoots, I hoot. I repeat everything he says as closely as I can, and the more I repeat, the more he talks. I think that Errol feels like we are having a conversation, and we are. After a while of repeating Errol’s words, I start to talk in my own short words, mostly salutations (Errol is probably one of the most greeted children in the history of the world), “hi” I say, in a high pitch, then “hi” down to a middle range, then deep down to “hi” in a big bass, then back up to a high, “hi”, always trying to find a pitch he likes and can repeat. I think one of the most important things we can do for Errol is to treat him like us, and to act like him; which is a hard balance, but one that seems to be working. Of course, you never know why something works, and it’s been lots of me squawking like a fool (what must the neighbors think?), and wondering if it was going to work, for months on end, but today, I think, we hit the jackpot.

We’ve entered a world that I wasn’t sure we would ever know. We are thrilled, and so is Errol. Errol’s life is like a book, and every achievement (crawling, talking, eating solid food, water skiing) is a new chapter. For so long it seemed like his would be a very short story, but now the words just keep flowing!

Errol at Work

Here's a picture of Errol at school (he's the one in the chair). The Children's Center is always doing fun things for their kids, all the things typical kids get; field trips, music, giant bunnies. The Children's Center is an amazing place, and has dramatically enlarged the aperture of Errol's life, still, I'd be pretty terrified of a six foot rabbit.

Welcome to Holland

This is a famous essay about raising a kids with disabilities. Although he wasn't what we expected, Errol is the light of our lives, and we are so lucky to have him.

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

Kisses

I got a huge shock the other day. Our dog, Sissy, likes to lick Errol (who wouldn’t?), so it’s not unusual to put Errol down to get a paper towel to clean him up, come back a minute later, and find Sissy licking Errol’s face (she’s an environmentalist, it saves trees). The other day, I fed Errol, put him down on my bed, and ran of to the kitchen for a towel. No sooner had I gotten to the kitchen than I heard a high pitched squeal and raced back to protect Errol from Sissy, I looked in horror as I could see Sissy crouching over Errol, biting at the swollen tongue coming from his mouth. Poor Errol, I thought. As I lunged to pull my former dog off poor innocent Errol, I realized that he wasn’t so innocent. There was, in deed, a tongue in Errol’s mouth, but it wasn’t his. The tongue belonged to Sissy. She had gone a bit too far in search of food, Errol had clamped down on her tongue, and wasn’t about to let go. Sissy was writing in pain, and she reared back trying to extricate her poor tongue from Errol’s razor sharp teeth. But Errol loved Sissy’s shrieks, and grinned, but held his grip. He was not about to let this tongue go. I don’t know if Sissy will ever talk again. You would think Sissy would have learned her lesson, but tonight, she was at it again, licking Errol clean. As for Errol, he’s smiling, just waiting for his next big chance.

Flipping Like Pancakes

Most adults’ favorite things are relatively static (we know what we like), but with Errol, since so much is new, his favorite activities are constantly evolving. A few months ago, his favorite thing was his hand (judge not, it’s a pretty nice hand), but now, as his life has turned outward, Errol’s favorite thing is roughhousing. I hold big Errol (15 percentile, booooooy!) on my lap, count, “one, two, three..…” and let his head bounce back onto the bed. He laughs and laughs until we do it again, and again, and again (he’s got no meetings to rush off to, no dishes to do, I’d bounce my head too). But that’s just the start of the fun. Errol’s also starting to do flips (with a little help). With Errol facing up, I hold him by his little thigh and say, “one, two……three” (often the counting is the fun, and doesn’t even have to be accompanied by anything else to get a great big belly laugh), and flip Errol, like a little pancake. He laughs and laughs, until I repeat my counting, “one, two,” pause for his laugh, “three!” and he’s off for another flip. Errol laughs again, and again, and we repeat until I (not Errol) am worn out. Errol’s getting more mobile and physical all the time. We are very happy for the present, and hopeful for the future.

Slowly by Slowly

Ten years ago, Cary walked across Spain. It took her the better part of six weeks, but she made it all the way across Spain to what medieval Spaniards thought was the edge of the world. Years before her Spanish perambulating, Cary had trekked across Nepal (the woman can walk). One day, on an arduous climb, she asked her weathered Belgian traveling companion how she could make it through this particularly long slog. "Slowly by slowly" her friend replied.

On the daily level sometimes it’s hard to see much progress, but when we step back and take the long view it’s easy to see all the strides Errol has made. Errol’s slow, deliberate pace is a great antidote to the race the rest of us live in (no wonder he’s always smiling), and we’ve seen huge advances in brain and brawn this summer.

I wouldn’t have believed it a few months ago, but Errol is now starting to crawl. Now, crawl is a broad word with dear Earl, but whatever you call it, Errol is starting to move. He rocks himself forward and reaches out and grab things he likes; toys, sound makers, the dog (poor dog). Errol’s not going to win any races (he would look cute in racing gear), but his rocking is slowly turning into crawling, which (we hope) may lead to bigger things (dancing???).

Things are in full swing on the cognitive front. At school today, Errol’s speech therapist, Melissa, stood on one side of Errol, and his beloved teacher, Anne, stood on the other. Melissa asked Errol to “hand the doll to Anne.” And lo and behold, without confusion or hesitation, he did just that. Boom! When Cary told me the news I couldn’t believe it, and I cried for joy. Errol may not be able to talk, but he understands, and that’s a step in the direction of speech (and singing). As one of his doctors (entourage) said, “We’ve got nothing but time.” And she’s right. It’s a long haul, but eventually, slowly by slowly, as long as we keep moving forward, we will get to a beautiful place.