Heart Baby

Sometimes I think of Errol as just an RTS kid. I think of his cognitive disabilities and forget about the fact that he is a heart baby, too. I got a call from Cary today around noon. She was on her way to Errol's school (at about 70 mph). Errol had turned blue and his sats (oxygen level) had dropped (to about 70). We knew that heart babies could turn blue, but it had never happened to Errol before. The teachers were freaked out, and the school nurse had called the ambulance which was en route. As Cary flew to Errol, I ran home (literally), jumped in the car, tore off to get Owen, and then raced to find Errol. Cary had, by now, gotten to Errol who had recovered from his first cyanosis (episode). As Cary, the teachers, nurse, and paramedics checked over a newly recovered Errol, he started his exit again and they all decided it was time for a trip to the Emergency Department. By the time I got Owen, jetted to Errol’s school, dropped Owen at my parents’ (thank god for grandparents) and caught back up with Errol, he was fine (again) and loving having the time of his life in the emergency department (his fifth or sixth visit-do they award frequent flyer miles?). Errol loves the fluorescent lights which there is no shortage of in the ED. Two hours, three nurses, one resident, our favorite nurse practitioner, Errol’s cardiothoracic surgeon, a five hundred dollar deductible, one bottled water, a well of emotions, and one attending physician later it was time to go home. There was nothing wrong with Errol that a little sleep couldn’t cure. But we weren’t complaining. Errol was healthy and home, and that is no small thing. Errol is an RTS kid, but he’s a heart baby too. That, we won’t soon forget.

Kissing Errol

Errol’s been held for most of his waking life (perhaps it’s a record). He’s rarely awake and out of someone’s arms. He loves being held, touched, and kissed, but I’ve recently felt that he wanted to be on the giving end rather than always receiving (How did I know a thing like that? Have a baby, believe me, you’ll know). It was Errol’s turn to give. I turned my face to Errol so he could give me a kiss. He closed his little lips around my cheek. It must be a coincidence, a reaction, I thought. I did it again. He closed his mouth into a kiss, again, but this time, the kiss was followed by a squeak of pleasure. I offered him my cheek again, and he kissed and squealed again. We were onto something. After five minutes of kisses, it was his mother’s turn. The kisses and squawks of joy were repeated. Happiness is all around us, if we are just patient enough to let it be.

Singing with Errol

Like his father, Errol’s older brother Owen is obsessed with the Beatles. In the car, we listen to In My Life over and over (five times in a row is our record). I still love the song.
I was singing a different Beatles song to Errol tonight. “it’s getting better all the time-better, better, better.”
He looked up into my eyes then locked onto my mouth as I sang, “It’s getting better all the time-better, better, better.”
Errol grinned (he didn’t have gas, it was the real thing.)
“Since you’ve been mine. Getting so much better all the time.”
Errol sang back. “Mmmmmmmmmm.”
His was no soaring Beatles harmony, but he had the idea of a call and response, and he replied to the song, “Mmmmmmmmmmmmmmm!” with a happy urgency.
We continued singing the chorus for a few minutes. There may be more efficient ways to communicate, but none with more feeling than Errol’s song.

First Night

As soon as we got to the Neo-natal Intensive Care Unit (NICU-everything has an acronym at the hospital) they wheeled The Little Man (TLM) back to stabilize him and prepare him for who knew what. We were told to stay in the waiting room while the doctors and nurses worked on our boy and that we’d be called back to see our son in a while (the first of many excruciating whiles). It was around 11:00 p.m. and Errol was about nine hours old. Our families were all there (mothers, fathers, brothers, sisters-seven in all) with food and drinks for us, serious looks, and guarded optimism (which they were wise to keep quiet about). There are many heroes in Errol’s life story, and after The Little Man himself, chief amongst them is Cary. Stoic Cary had been awake for two days, in labor for twelve hours, delivered a nine pound son (that’s the size of a watermelon, folks) without a drop of medicine, hoofed it over to the hospital, grieved over her new son, and all without a bite to eat, and nary a complaint. Think about that the next time you are griping about the copy machine not working or the price of gas going through the roof.

We tried to sit down and eat something during this horrible intermission. I kept pacing around and looking at the clock. Our families tried to be upbeat without being too upbeat (it’s a delicate balance when a life’s in the balance). Finally, a resident came out and ushered us into a consulting room. They usually try to prepare you for bad news so that you have a moment to imagine the horrible before you get the knock out punch. I figured she was softening us up for the real doctor who would give us a real battering. The resident told us that we would see a pediatric cardiologist in a minute who would have a diagnosis for us. We didn’t know what we were dealing with (bad heart, bad lungs, bad nervous system, slow start?) so we asked some general questions, to which she gave us some general answers. Then she hustled back to the NICU and told us that the doctor would see us soon.
I was feeling frantic and more than just a little bit guilty for bringing a child into such a painful world (it’s hard enough when you have good health). I was feeling grim. Things must be dire or they wouldn’t send in a highly specialized doctor at midnight. I wasn’t sure if Errol was going to live through the night.

As we pondered all the possibilities we were called back to the NICU. Before we could see our baby or the doctor we had to go through a very strict washing protocol. Under supervision, we took off our rings and scrubbed with surgical soap and hot water up to our elbows. Then, without touching anything, we dried our hands (there isn’t a whole lot of handshaking going on in the NICU). The room was bright (but not cheerful) and full of constant beeps and bings. It was divided into pods, each crowded with very sick babies. We were escorted toward Errol who looked wan and tiny in his hospital bed. He was full of IV lines, tubes, and was attached to a breathing machine. We cried and cried and touched him gingerly, taking care not to unplug him from the machines.

We met Errol’s nurse (each nurse has an average of two babies) and then the doctor walked over. Dr. Cnota held our future in his hands. He was about to tell us the most important news I would get in my whole life. He began by drawing a diagram of the heart. He explained that he had already seen slides they had taken of Errol (they don’t mess around in the NICU), and that his right ventricle had not formed (this sounded bad, but in the haze I was in, I couldn’t tell a heart from an apple, and I certainly couldn’t remember what the right ventricle did). I nodded. Dr. Cnota explained that Errol had a serious heart defect called pulmonary atresia (there is a link to a web site with information about this heart defect on the links list to the top and right of this screen). He drew a diagram of a normal heart and then one of Errol’s. The comparison didn’t look good for Errol. We listened to all the details trying to catch some hope in the web of anatomical data, but it sounded dire. Finally I stopped Dr. Cnota and said, “Doctor, this doesn’t sound good. Is he going to make it? Is there anything you can do?”
Dr. Cnota turned to me and gave me a confident smile I wasn’t expecting. “Oh yeah," he said. "We’ll take care of this.”
After ten hours, I exhaled. “He’s going to live?” I asked.
“We have a surgery for this. You’ll meet Dr. Hines in the morning. He’ll fix this. He does it all the time.”
I couldn’t believe it. Our baby, on the edge of death, wasn’t going to die tonight, maybe not tomorrow. I felt like I had just received a stay of execution. I cried. Cary cried. The doctor didn’t cry. We held each other (just Cary and me). By the time we left Dr. Cnota and touched Errol goodbye (we couldn’t hold him) it was 3:00 am. We had to be back to meet the surgeon in about four hours. We were drained and exhausted and we had just begun the race, but Errol was alive.

Lessons

Errol has taught me a lot about life (some good, some bad, all important). You can leave a comment at the comment space below about what the Little Man (Errol) has taught you. I've included a photograph of Errol, because he is, of course, not just a lesson. He's a living, breathing, adorable baby boy.

Hanging by a Thread

In genetics, Errol’s defect is referred to as a spontaneous mutation. In his earliest embryonic days, gene 57 misfired and then replicated itself over and over again. It’s amazing what a difference one little gene can make (they are smaller than you could even imagine) in our ability to walk, talk, think, floss, or even for our heart to beat just so. It’s astonishing that one little genetic misfiring can exact such a price, then again, when you think about it, it’s amazing that any of us are here at all. After all, a lot has to go right for anybody to be breathing, and I think it would be fairly safe to say that in the big scheme of things, we’re all just hanging by a thread. If the planet were just 5 degrees warmer, we probably wouldn’t be here (or not for long); if the mix of carbon and oxygen on the earth were just tweaked a bit one way or the other, none of us would be breathing; and in the course of human history, if our great, great, great, grandfather hadn’t (insert family history here) been walking down the street when our great, great, great grandmother went flouncing past, what seems so inevitable, wouldn’t have happened at all, and we would be (or not be) history. We are very lucky to be here in this most improbable moment. Enjoy it, I say, and Errol certainly is, because despite gene 57 most egregiously compromising the Little Man’s (Errol’s) bodily functions, it hasn’t taken away one ounce of his happiness.

Safety in the visible

Errol has brought a great deal of mystery into our lives. So many of our expectations about life and death have been shattered. The safety of the normal has been replaced by a new world we have entered with great trepidation. A.R. Ammons has this to say.


Epiphany

Like a single drop of rain,
the wasp strikes
the windowpane: buzzes rapidly
away, disguising

error in urgent business:
such is the
invisible, hard as glass,
unrenderable by the senses,

not known until stricken by:
some talk that
there is safety in the visible,
the definite, the heard and felt,

pre-stressing the rational and
calling out with
joy, like people far from death:
how puzzled they will be when

going headlong secure in "things"
they strike the
intangible and break, lost,
unaccustomed to transparency, to

being without body, energy
without image:
how they will be dealt
hard realizations, opaque as death.


A.R. Ammons

A new son

We always knew there was something developmentally wrong about Errol. At first, we put it down to his heart. Later, we figured he had lost time in the hospital that he’d catch up once he was home. Always, we were hopeful for Errol, but there was a nagging fear that Errol wasn’t quite right. The more I worried about Errol, the more I would argue with Cary that Errol was fine, and the more I would hold on to any tiny thing that might bolster my theory that Errol was going to be fine. The less I believed it, the more I argued it (argued myself really). I was desperate. Cary was desperate. We could see through our own hope, and others were too nice to argue with us. On top of it all, we were so wound up with his heart problems, surgeries, and hospitalizations that we could tamp the deep dark truth about Errol's cognitive abilities down into our heart of hearts.

Then it was my birthday (#38). Errol was still in the hospital, so Cary and I had plans to celebrate my birthday amidst the machines, nurses, residents, and doctors. We needed an antidote to our misery, and after all, we weren’t going to let reality get in our way of a good celebration. At the same time, I was working (it was my first week of a new job) and Owen hadn’t started school yet. It felt like we were juggling thirty eight pins.

So on this day of celebration, after a full day of classes, as I was preparing to leave work, Cary called me in my office. She had been to the geneticist. She had a diagnosis to share. As soon as I said hello I could hear Cary's sobs. I girded myself for the worst (I was practiced by then) Cary sounded absolutely depleted.
“Tell me.” I said.
“I talked to the geneticist. It’s not good. Errol has a serious syndrome called Rubinstein-Taybi Syndrome.”
I swallowed hard. “What does that mean?” I asked. I wanted to know fast.
“It means he’s retarded." Cary cried out.
I had imagined this diagnosis for a long time, but that didn’t make it any better.
“Oh my God.” I started to cry.
Cary and I cried together and then she continued with the diagnosis. Hoping to soothe me with the facts. “The syndrome means he’s got a very low IQ. The heart defect is part of it. He’s going to be developmentally delayed.” Cary went on with more important details, but I couldn’t hear past the verdict: retarded. It was true. The more we talked, the longer before I couls be with her and Errol. I got off the phone and walked down the hall with tears running down my cheeks. I felt like I had lost someone (the son I had expected), but in fact, I had lost something I never really had (just hoped against hope that I did). I drove to the hospital way too fast and when I got there I kept my eyes to the floor as I headed to the sixth floor. When Cary and I embraced we cried and cried and cried-each comforting the other. Errol wasn't sad, he just grinned. Nothing had changed at all. It was that rainy last day of August on the 6th floor of the hospital that we started a new life with our new son.

Gratitude and Compassion

There is a meditation practiced by Tibetan Buddhist monks that focuses the mind on gratitude and compassion. As you open yourself to others (giving and taking), you become most fully connected and human. Every morning as I walk to work I try to think of all those I should be compassionate towards, and then I list all the things I have to be grateful for. It’s a very long list.

Errol has taught us a lot of things. One of the most important lessons we’ve learned is how kind and generous people can be. Since his birth people have done many things for us, over and over.

Mowed our lawn
Brought us wonderful food
Folded our laundry
Given us money (a fund was set up for our medical expenses)
Brought us more food
Cleaned our kitchen (it needed it!)
Held baby Errol in the hospital (he was alone for about 15 minutes during his two plus months in the hospital)
Brought us movies to watch
Took us to dinner
Babysat (every night, a babysitter would stay with sleeping Owen so Jonathan could visit Errol and Cary in the hospital)
Hugged us
Washed our dishes
Prayed for us
Babysat again
Sent us presents in the mail
Listened
Brought us coffee
Left us treats on our porch
Learned about Rubinstein-Taybi Syndrome
Cried with us
Bought us drinks
Took Owen to school
Wrote us notes
Brought us flowers
Thought about us
Played with Owen
Made Errol blankets, hats, and clothes
Took our dogs on walks
Visited us
Cooked us more dinner
Asked us questions
Held us in the light

I will never be able to pay back these many personal kindnesses, but I will try my best.

Similarities

In many ways, Errol’s older brother, Owen, is a whole lot like us (his parents), except wigglier. I’m really not sure how much Errol is like us (we don’t like baby formula). Sometimes it seems like Errol is a son of Rubinstein-Taybi Syndrome more than he is a son of ours. Not that we don’t love him, we do, perhaps all the more because of his syndrome, it’s just that he doesn’t share a lot of traits with us (or look a whole lot like us – to his benefit, paternally). It’s not that we aren’t sweet and happy like Errol (his mother is sweet), it’s just that the commonalities stop there. (then again, it’s not like typical infants are a whole lot like their folks either. They mostly just do the big three: eat, sleep, poop). Perhaps when The Little Man gets older we’ll start to see more of us in him After all, Errol's older brother Owen only started to really resemble our personalities after he was a year old. In a way, it doesn’t matter at all. Errol has a Mohawk, and that should be enough for any adoring father.

This is a photo of Errol and the panda his grandmother, Luly, got him for Christmas. That's Errol in the foreground.

The Happy Gene

Here's a happy picture of Errol. He was dressed as a duck for Halloween (not his choice). You might think that the reason almost all the pictures of Errol are happy is because we just don't take pictures of him when he's sad. The truth is that Errol has what other parents of kids with Rubinstein-Taybi Syndrome call "the happy gene", and is almost never unhappy (it did happen once on October 11, 2007). How'd you like to be vacinated against sorrow? Errol seems to have been. Here's the proof.

Brave Errol

Errol is a brave boy. He's been through four surgeries, a couple of spinal taps, has had gallons of yucky medicine poured down his gullet, and has had untold numbers of IVs and needles stuck into his new little body. The first half year of his life was fraught with great pain. That kind of punishment takes a toll, but I don't know how much it affects him today. Sometimes I think that he's so happy because he's out of the constant pain that was the hospital. We are so proud of our stoic little man.

Eyes

The English painter, J.M.W. Turner didn't see things like most people. Errol's eyes don't work the way others' do, and because of his visual impairment, he can hardly see past his arm. I don't know if Errol's world is a beautiful riot of color, or a web of confusion, but he works hard to make sense out of the visual clues that slide right past his straining eyes.

We're doing everything we can to help him have good vision. We bought some little puppets that attach to Errol's wrists. Errol juts his arm up straight in the air, and stares intently at his puppeted fists for the longest time. At school, Errol gets vision therapy once a week, where they put him inside a sensory deprivation box which helps him focus on the beams of light the vision therapist shines into his cave. Since Errol doesn't respond well to sight (except at close distance) we spend a lot of time at home touching or rubbing his face to stimulate him. Our faces are often within inches of his as we smile at each other. He coos and laughs as we rub his cheeks or play with his chin. He loves the sensations he can get through touch but which are lacking through vision. We hope Errol's vision therapy will increase his visual ability and the richness of his life, but if it doesn't, we also know that an impairment of one sense can sharpen other senses. As with so many things, only time will tell, but one thing that's for certain is that Errol has already shown us a wider way of seeing.



Eyesight

It was May before my
attention came
to spring and

my word I said
to the southern slopes
I’ve

missed it, it
came and went before
I got right to see:

don't worry, said the mountain,
try the later northern slopes
or if

you can climb, climb
into spring: but
said the mountain

it’s not that way
with all things, some
that go are gone

A.R. Ammons

Gratitude

Ever since Errol was born, I take a lot less for granted. It's all so very fragile. No one knows that better than Errol, who is grateful for everything. I try hard to be like my happy son.

Judge not, oh, go ahead

Friends lost their 20 year old son this fall. It was an unexpected tragedy. After the death, every time I saw them I didn’t know what to say to them and was at a terrible loss for words. Of course, Errol’s difficulties are not equal to their tragedy, but the reaction that many people have is the same: silence. There are some big exceptions, but most of the time, people don’t ask a whole lot of questions. Disability = Invisibility. I suppose that most folks don‘t want to upset us, bring up bad feelings, or dwell on the negative. After all, life is a profound well of suffering, and it’s a hell of a lot easier to tread on the surface than to dive for treasure. I've been at a loss for comforting words, so I understand how silence can descend on a body. I'm hoping my experience will help me be more connected to the world and to ask more questions. Only when we share in the fullness of emotion are we truly connecting. Besides, the more questions I ask, the more I can sit back and judge others for their silence, and what could be more fun than being judgmental?

Puzzle Pieces

I’ve written about trying to stay in the present, but I also like to know as much as I can about Rubinstein-Taybi Syndrome and what lies ahead. We are a part of a Rubinstein-Taybi Syndrome listserve with other parents RTS children (many aren’t still children, but have moved into adulthood). Although there aren’t that many people with RTS (there’s only 3 that we know of in North Carolina), the families are a tight group and are always sharing advice, sympathy, and camaraderie. My wife, Cary, our listserve liaison, gets about 40 e-mails a day from the listserve . There is a lot to talk about, and it’s always good to know when others are also carrying your burden (which is a lot more often than you’d think). It’s good not to be alone. It’s also good to share in the excitement and triumphs of life. We are always learning about Errol, but it always draws us out of our perfect present.

Tonight we learned that many RTS kids suffer from psychological disorders which, with boys, kick in around late adolescence (here I go again, hurtling into the future). There are issues with obsessive compulsive disorder, excessive anger (who wouldn’t be mad), anxiety, and other problems (of course, it’s not like typical kids don’t deal with these issues, too, it’s just more likely with RTS). It’s hard to imagine sweet little Errol suffering these maladies, but, like much about our bodies, most psychological problems seem to grow worse with age. As we are learning from our listserve posse, a lot of RTS kids get overstimulated, and parents often have to calm their environments by taking all the pictures off the walls (if their children haven’t already done this for them). Cary’s an artist, and our walls are adorned with her gorgeous photographs. It’s tragic to imagine us erasing all this beauty from our walls. But here I go, jumping ahead again. There are no guarantees on the future; bad or good. Errol could be a photo-hater or an artist, himself (probably more along the lines of Jackson Pollock than Rembrandt Van Rijn). Only time will tell. Still, every day we get a fuller view of the puzzle that is RTS, and today it wasn’t a pretty picture.

Luck

Errol turned ten months old today, and we feel keenly lucky to have him. We learned at school today that Errol’s classmate, Jorge, died over the weekend. Jorge caught a simple cold which turned into RSV and then slowly killed him. I saw little Jorge every time I went to Errol’s school. He was the sweet disabled two year old who wore leg braces and worked hard at his exercises; and now he is gone. Some people get decades of life, others; next to nothing. There is no such thing as fair in this blind universe. This sad episode just goes to show us how fragile Errol’s life is and reminds us again (not that we wanted reminding) to savor every single second.

Some might think that the death of a retarded child is somehow less tragic than that of a typical kid. (I might have thought that pre-Errol). But a kid like Jorge had to really work for everything he had, and I doubt he took the good part of life for granted (perhaps he enjoyed it more than a normal kid ever could-although I’ll never know.) As I watch Errol grow and thrive and as I think about all the really horrible, horrible shit life has thrown at him and that he has overcome (go Errol!) it makes me think that his life, if anything, is more valuable than mine. Not that we should be competitive about the value of life, but I certainly don’t think that the passing of a disabled kid is somehow less dire than that of an all-American tot. I’m sure that any parent with a disabled kid has spent plenty of anxious time imagining life without their child, and if they are like me, they are acutely aware of just how hard won and precious that delicate life is.

We are thinking of little Jorge tonight and holding tightly to our beloved little Errol who, thanks to the heroics of so many, is right here with us. We are trying to embrace all that is here in this sweet and tragic moment.

Rockin'

Errol loves music. Errol loves everybody.

Future Tense

Any parent worries about their children, and with all of his problems, I worry a lot about Errol’s future. But what good does it do? Every time I express my worries, a wise friend urges me back to the present, “Worry is like interest paid on a debt you don’t owe.” she says (take a second to figure that one out!). She's right not to hurtle 20 years ahead (especially when we don't even know what tomorrow will bring), and it's true that it’s better to live in the moment, but try as I might, I am hardwired to always think in the future tense (I’m thinking about tomorrow’s lunch right now).

I guess I've come a long way from not knowing if Errol would survive the day, to dreaming about his adulthood, and I'm not even sure how productive all this worried speculation is. Our dreams for our eldest child Owen are so boundless, but with Errol I find myself being practical and circumspect. I don't want to have different dreams and limits for my kids, but as much as I believe that our perceptions can influence reality, my boys still live in significantly dissimilar circumstances. I find myself hoping that Owen might be an architect, chef, writer, middle manager (ok, not really), musician, or whatever will make him happy. With Errol, my great hope is that he might be able to have a job, any job. I hope that maybe, if we're lucky, Errol might be a grocery bag boy (curiously, the baggers around here are either white people with disabilities or African Americans-but that’s a whole nother story). Now that Errol is making strides at school, my dreams for him are getting bigger (I mean, if George Bush can be president, surely Errol can at least be Governor or something), and I imagine the world opening up for our baby boy. I know that it’s best not to think about Errol's future (who knows what life will be like in 20 years, or if I'll even wake up tomorrow), still, I just can’t break the habit of hope.

Brothers

Errol and Owen love each other. At Owen's request, Errol moved in to share his room at about nine months of age. We put them down to bed at the same time in the same room every night. They are so sweet together. Errol would rather look at Owen than at just about anything else in the world.

I try not to compare my boys too much (but it's hard not to). All siblings are different, but Owen and Errol have been dealt really different cards. As Owen passed all of those infant hurdles (crawling, talking, walking, crocheting, potty training), it was always a matter of when, whereas with Errol it’s a matter of if: will he walk, will he talk, will he type 60 wpm? The stakes are higher, and we celebrate the smallest victories (tracking with his eyes, holding his head up, grabbing a toy). Still, in the end, our biggest hope for both our boys is that they possess a long term happiness, and you don’t need to type fast to get that.

Owen doesn't know that every little brother isn't like Errol. One day he will, but I think that by then he'll probably feel lucky to have a brother he loves and who loves him as much as Errol.

Expectations

Errol has been given a lot of diagnoses; some good: good spine, good ears, sweet smile; but most bad: pulmonary atresia (serious heart defect), Rubinstein-Taybi Syndrome (many ailments, chief amongst them, a significant cognitive disability), hypotonia (low muscle tone-forgive these medical misspellings), Microcephaly (small headedness), undescended testes (ouch), cortical visual impairment (visual processing malfunction), malformed retina (eyeball problems), tortacolis (imbalance of muscles in the neck), hemangyoma (malformation of the cheek-he’s still cute as hell), and finally, bad feet (he wears little Nikes to sleep to straighten them out-it’s not so easy with the testes). I won’t try to pick the worst one (this isn’t a contest), and I’m sure he’d be glad to do without them all-but he’s got them.

So what do we do with all these diagnoses?
There are those that tell us we should be realistic and accept what he has.
Others tell us stories about the little girl who was told she’d never walk and then grew up to run marathons.
What kind of expectations should we have for our dear little Errol?

I haven’t answered that question yet, but I try to stay optimistic. Our hopes and view of him will shape who he is. Reality is shaped, to a large degree, by perception (there are still those pesky laws of physics).
I always hope for the best without harboring any outrageously foolish illusions.
Of course, it will become more complicated when Errol can talk and understand (we hope), and we have to help him navigate his limitations (we all have them, his bar is just a bit lower-we think). For now we stay hopeful. He keeps surprising us.

Typical Day at Ten Months

After months of fear, pain, uncertainty, and anguish, life for Errol at 10 months is good. Errol and Owen share a room (Owen’s choice) and one of them wakes the other up about dawn (thank god for the long nights of winter). Errol is such a sweet kid that he doesn’t complain and almost never cries to be fed. We get him up and feed him the first drink of the day (it must be five o’clock somewhere) before we do anything else, then it’s time for a diaper change and some time on the mat with different blinking and beeping toys while we woof down our breakfast. After a bit of play and stretches (therapy, not Pilates) Errol takes his anti-reflux medicine (we are down to only three doses of two medicines and it feels great), and head off to school with brother Owen. We drop Own at his elementary school and then head off to the most amazing school in the world, The Children’s Center. There we spend some time checking in with his wonderful teachers, Anne, Audrey, and Paula – three teachers, six students. They each know and love Errol like he was there own, and there’s no doubt that it will make him a very different person. Imagine if all schools were set up like Errol’s. Imagine if we thought of all of our students as disabled (which they all are in their own ways) and responded by giving them small classes, tons of intervention, love, and the best equipment in the world. The stakes are high at The Children’s Center, if they don’t do their best, a child may not talk, or walk, but all our kids are worth the effort – what would the harm be in having schools that are too good? We feel so lucky to have Errol at his school. I wish all parents were lucky enough to have schools invest in their children like The Children’s Center has in Errol.
Errol stays in school from about 9:30 until about 1:30. While he’s there he gets play time, music, physical therapy, occupational therapy, vision therapy, speech therapy (I’m not kidding), diaper changes, feeding, sometimes a short nap, and always lots of kisses. Where do I sign up? When we come to get him around 1:30 he is exhausted, and takes a massive (up to four hour) nap when he gets home. He’s back up to feed around four or five, and then we all play, do some stretches, eat dinner, take another round of medicines, and then hit the sack about seven. Yes, we are very lucky, our kids sleep from about seven to seven. That gives us twelve hours to eat, drink, be merry, cuddle, clean the dishes, wash and fold the clothes, clean house, tend the garden, tidy the yard, take the dogs on a walk, read, talk, watch the occasional movie, and maybe even sleep. Life is good, and it just keeps getting better.

Ch-ch-ch-ch-changes

In five days Errol will turn 10 months old! He’s had a huge growth spurt physically and cognitively in just the past two days. It’s amazing how things can be static for months and then surge forward just like that. You can tell Errol’s proud of his changes by the gleam in his eye. I’ve worried for months that Errol would be an infant forever. As sweet and happy as he is, it was hard to see any progress. He was not able to do the things a three month old can; holding his head up, tracking, reacting, gripping, typing (ok, not that), but I can see huge growth in all these areas all of a sudden. It’s finally possible to imagine him changing and growing into a child/teenager/adult. He will probably always be delayed, but he is going to grow, which is a great joy to us now.

Relativity

We’re all disabled, just to different degrees. Compared with Einstein, Today’s greatest mathematician is a child. Compared to a kid with Down’s Syndrome, I am a genius. Compared to a llama, Henry Kissinger is...oh never mind. It’s all relative. Still, there is a baseline of what is considered cognitively normal, and right now, Errol is not up to the standard. Then again, he’s not too far, and with the school he’s got, and the love surrounding him, he might just make it to normal. I think I’d rather be on my way up than on my way down, and Errol is definitely going to maximize his potential. There is another baseline, too, that we mustn’t forget, and that’s the happy scale. If you measured happiness, with 10 being blissful, and 1 being miserable, I’d put the average person at around 6 with Errol being about a 9 (where most of us might land on a really good moment). I guess I’d rather be really happy than really smart. Errol, of course doesn’t get to choose (but who does). But I think he’s in store for a good happy life (which is more than most of us can say.)

They say that when researchers ask people to predict what their lives are going to be like, the optimistic people really overestimate how well things will turn out, whereas the pessimists are right on the mark. But so much of our life is spent out there in the future imagining, hoping, planning, that I’d rather be wrong and hopeful, than right and distressed. Errol, of course, because of his Rubinstein-Taybi Syndrome, doesn’t spend much time in the future, which is probably about the perfect place to be. He’s right here in the moment, happy as a clam.

The picture accompanying this post is a photograph of a crater on Mars that looks like a smiley face. Neat, huh?