Birthday Party-Friday, March 9

Errol's will turn one on Thursday, March 8, 2007. There were so many times this past year when I never thought Errol would live to see a year: his birth, those nights in the NICU, his open heart surgeries, the first time Owen held him, when his lung collapsed, his RTS diagnosis, and the times he turned blue at school (it happened again today, but we are learning not to panic). We are so extraordinarily fortunate to have him, but it wasn't just a matter of luck. We could never have survived this year without the circle of light with which you surrounded us. Errol's has given us many, many things, but besides the joy of knowing our sweet boy, perhaps the most precious gift his life has brought us is the faith he has given us in the goodness of people, of life. Everyone who has hugged, consoled, held, bailed out, fed, and loved our family is invited. We've never had more to celebrate. Errol's first birthday party will be Friday, March 9, from eight pm until two at our house. Bring a memory of Errol's first year, some Kleenex, and your dancin' shoes. Thank you.

Human Being

Errol turns one next Thursday. This marker in his remarkable life has shaken loose all number of thoughts and emotions.

In my civics class today, I asked my students one of those old fashioned, traditional politics questions.

"If you had a car, and one year you replaced a part, say, a wheel, and then the next year you replaced the fan belt, and then a while later you replaced the transmission, and the next year you put a new timing belt in, and you continued in this fashion until you had replaced every part of that car, so that none of the original parts remained, would you still have the same car?"

"Will that be on the test?"

I then asked the question in a more human and less possible (so far) way.

"A few years ago, my father had hip replacement surgery, then last year he had a knee replacement, six months later he had another knee replaced. Hypothetically, if he subsequently had every part of his body replaced, at what point would my father no longer be my father? Would he be a different person when he had his heart replaced, or his skin, or his brain?"

You never know when the big questions you’ve been gnawing on will come out. But they will. Now that I am the proud father of a special needs kid (term du jour) I think a lot about what it means to be human. It’s not just special needs kids' parents, I imagine. My not special needs, but still needy Owen prompts plenty of hairy questions, too. In other words, when I asked that rather slippery question, I was asking, "What makes a human a human?" Which pretty much freaked the kids out (of course, for many of them being more or less freaked out is a mostly permanent thing, which is part of the joy of teaching them. After all, if this crazy world didn’t freak you out just a little bit, I don’t know what would.)

The students had lots of reactions to my question. Many agreed that the point of no return to humanness would be a brain replacement, and being a materialist, I would have said (approximately 12 months ago) the same thing.

But post Errol, I’m not so sure any more (about a lot of other things, too) how central intelligence is to our definition as humans. After all, the great apes we see at the zoo are probably much smarter than Errol is now (sorry Errol, but the same goes for most human babies), but that doesn’t make them human, or the president a gorilla. Many of my students tie our humanity to the "soul", but I have yet to see a soul, and need something more tangible to cast my lot with. So, if it is not our mind, what is it that makes us human?

I think, in fact, it is our ability for empathy - to see ourselves in others, and others in ourselves - that distinguishes us from the other beasts, and makes us human. Tonight as we were heading towards sleep, Cary was reading The Owl and the Pussycat to Owen, as I read a picture book to baby Errol. The book I was reading Errol didn't really register with him (so much for Baby Sartre), so I put it away, took out a picture of Owen, and held it up, right in front of Errol’s little face. "Hooo! Hooo!" Errol smiled and smiled. “Hooo! Hooo!” There was a twinkle of recognition in his eyes as he saw something in Owen's beautiful face that was familiar, loved, like his own, human. Or maybe he was just pooping (it happens all the time). One of the great gifts of being human is our ability to connect to other humans. This evening, surrounded by the people I love most in the world, it was.

Troubles Abound

One thing Errol has taught me is that tragedy abounds. When you start to look for people with troubles you don’t have to venture far. From our house down to the next corner there are four cancer survivors (that we know about). Our ex-next door neighbor was a drug addict/dealer who sold her eight year old son’s clean urine to her drug addicted/tested friends. Down the next, a neighbor lost his wife of over fifty years, up the hill, a neighbor lost her son to drugs, and down the street, another neighbor lost her husband in a terrible accident. Our elderly neighbors seem isolated, lonely and not terribly thrilled about getting old (although it beats the alternative). And I’m not even mentioning the daily tragedies of burglaries, insomnia, divorce, financial peril, surly kids (not ours) and luke-warm coffee (it happens). I won’t go on, but I could.

And these are just the folks whose tragedies we know about. When you think about it, life is pretty unrelenting. It helps me to know that other people have been through the ringer, made it out alive, and every day, get out of bed, get dressed, and go on about their lives, mostly uncomplaining. (You don’t have much time to complain when you’re in the thick of it. The people I hear complaining don’t usually have any bigger problem than their VCR is broken). For our family, the bottom line is that we’re all alive (by the skin of our teeth) and that’s worth celebrating (which we do).

Our sweet little Errol certainly doesn’t see his life as tragic and almost never complains. I’ve never known a baby that cries less or smiles more than Errol. All the IVs, shots, nasal canulas, catheterizations, surgeries, physical therapy sessions (daily), NG tubes (don’t ask, you don’t want one), intubations, MRIs, X-Rays, doctor’s exams, trips to the ER, late night stomach aches, reflux, and ear infections leave him buoyant and ready for more of life. Every time he wakes up, as soon as he realizes he is alive, Errol starts to smile. We should all be so.

Nice to meet you

This is a picture of Errol at around ten months. His eyes seem blank. He is staring into nothing. It's hard to imagine what he's thinking (or not). In zen mediation, you are supposed to clear your mind to reach enlightenment. (I've praciticed it for years; it's hard. I'm not enlightened-- surprise, surprise). Perhaps Errol, with his blank slate, has achieved that rare state of transcendence, or perhaps he is just thinking about dogs, or milk, or nothing at all.

RTS kids have tremendous difficulty with long term memory (which makes it really difficult for them to learn), and we're not sure if Errol can remember much more than his immediate family, his school, and Secretary of State Condoleeza Rice. Everything is new to him. Sometimes it feels like Errol is the world's youngest Alzheimer's sufferer. (These maladies share many neurological similarities). It's hard to imagine a life without memory (all the surprises), without the three dimensionality of past, present, future. I would miss the texture of life if everything existed in the here and now, but Errol doesn't seem to mind his mind (not that he knows the difference). I think that as Errol ages he will grow both forward and backward, as his past pushes into his brain. As for now, he just keeps smiling at everything, and it's hard to want to change that.

Errol takes a bath

Errol loves his bath. As we lower him into the water a surprised look passes over his face for about ten seconds, then Errol realizes where he is, gives us a huge grin, and splashes his little feet around and around the tub. If it were up to him, Errol would stay in the bath all day (who wouldn't?). It doesn't take a world champion IQ to know the joy of being swaddled in warm water. In fact, most of the great joys in life boil down to most the elemental pleasures: eating a fresh home cooked meal, dancing, stepping into a warm shower, laughing, walking out into the warm sun, singing, digging in the dirt, holding someone you love. I'm so grateful that Errol will be able to share these most human pleasures with us.

Full body smile

Errol's smile is so pure, full, and sweet, always ready, and so quick to come. We call it the full body smile. It starts with his eyebrows then spreads down through his cheeks and into his mouth, works its way through his shoulders into his torso, and finally worms its way down through the legs which lift up, up, up as an exclamation point to his smile. Errol often wakes up smiling (from zero to smiling in five seconds). If you know Errol, you probably think of him smiling.

Welcome

This is a blog about my sweet son, Errol Milner Clifford.
I’ve created this blog for a number of reasons.
1)I think Errol will enjoy reading this (I hope he will be able to read) when he’s older (wouldn’t you?).
2)There’s lots of folks who love someone with Rubinstein-Taybi Syndrome (to know one is to love one) who might find something worthwhile herein. When Errol was diagnosed with RTS we were shooting in the dark. We read everything we could get our eyes on, and I think it would have been comforting to have had a bit of a sketch of what awaited us (although it’s different for everyone).
3)With a newborn son fighting for his life in the hospital and a three year old at home wondering what the hell was going on, I had tons of extra time on my hands.
4)People ask about Errol all the time, and I don’t always know what or how much to say. I hope this will answer all of your generous questions.
5)Errol’s Cool (with a capital C).
6)It helps me to make sense of this crazy and wonderful gift we call life.

If you are like me, you won’t have time to read every word of this rather obese blog, so browse through the archives (it's a chronological narrative starting back in October 2006, which later widens into more general musings on Errol's story), or if you are really busy, just look at the pictures throughout the blog and make up your own story. And as they say, when life gives you lemons, make a martini.

Enjoy. Errol loves you.

Love to Love

For Christmas, my wife made me a beautiful book called Daddy Loves Owen. It’s a story in photographs of all the fun things Owen and I do together: pony rides, canoeing, running on the beach, robbing liquor stores, tickling, playing (ok, we didn’t really rob any liquor stores. Yet). Things I might not (probably won’t) do with Errol (not, at least, in the same way). It makes me sad to think of all the things that Errol and I won’t have together. Especially when I know how wonderfully fun life can be with Mr. Owen. Still, I’m lucky to have what I have with Owen, we’re fortunate just to have Errol alive, and there’s no telling the fun Errol and I may have together. Besides, we have a great time now; cooing, tickling, singing, laughing, smiling. I hold Errol up near to my face, turn my head away from him, then snap my head back around so that my face is inches away from his, and give him my biggest grin. It dawns on him slowly, then he sees the game. His beautiful face fills with a huge rapturous grin as he chuckles a tiny belly laugh. We do this over and over again, and time stops. It’s best not to compare too much, but just enjoy the wonderful moments we are so lucky to have.

Worried Sick

Earl's got Pneumonia. It's what caused him to turn blue at school (it scared the Bejesus out of the school staff), and get rushed to the hospital. It's not good that he's got pneumonia, but for me, it's always best to know what you are dealing with (not knowing is my least favorite state). Now that he's been diagnosed, Errol's on a zillion medicines: a round of antibiotic shots, oral antibiotics, anti-reflux medicine, probiotics, aspirin, and a nebulizer (I hadn't heard of that one either). A nebulizer is a machine that vaporizes steroids and then shoots them through a mask and straight at innocent little Errol - poor boy. To add insult to injury, the machine is disguised as a penguin (like Errol cares, knows what a penguin is, or can even see that far). I think I'd find it a bit disconcerting to have a tube attached to a penguin midsection which shot a fiery steam towards my mouth. That's supposed to be comforting? When Errol grows up and has a penguin phobia, I'll know who to blame.
With all the medicines in our house, Cary and I feel like chemists. This week alone, Errol's been to the doctor five times (a shot in each thigh each visit), the hospital twice (X-rays and the jolt of the ED), and the pharmacy (no shots or steaming penguins). Poor Little Man, and poor mama, who has had him home from school for a week and a half (and there's more to come). We thought we were going to take Errol to the hospital today (102 degree fever, nausea, tears), but Errol rallied and is sleeping peacefully right now. I drove past the hospital with Owen this morning and my heart sank (so did Owen's). But, at least we aren't there (yet). We keep saying things are going to get better (and it really does), but the fact that we keep saying it means that things aren't right. Still, we are counting our blessings at home tonight and dreaming of penguins, grateful to have two beautiful boys, and hoping that things will continue to get better.

A Mouse in the House

There's RTS mice running around. I bet they're happy. In recent research with these mice (they really do have Rubinstein-Taybi Syndrome) scientists have been able to reverse some of the mouse RTS symptoms. I try to stay realistic, but of course you can't help but being optimistic about this sorts of news. There is research that has shown these disabled mice (do they get handicapped mouse parking stickers?) gaining memory function with drug therapy. Could Errol get a mental boost one day? Could he grow taller (the average RTS kid is about five feet tall)? Could he be "typical"? Would we want this beautiful baby boy to change?

I often think that it's best not to even speculate (a sign of dissatisfaction with the way things are) and to accept Errol for who he is and enjoy that beautiful person. Still, sometimes it's nice not to know what the future holds.

Naming Errol

Errol’s had lots of loving names throughout his eleven months with us. At the hospital (where he spent much of his first half year) Errol nomenclature followed along class lines. The doctors called him Errol, his nurses, Earl, and the nurse assistants just called him Taterbug. We’ve run through a number of nicknames for him, ourselves. He’s been, at various times, Errol, Earl, Early Bird, Birdie, The Duke of Earl, The Little Man (he’ll always be little in many ways), Little Man, The Little Mammal (he is, and so are you), Mammal!, The Milky Man, The Milker, and, most recently, the Snapper (don’t ask).

Apart from his sobriquets, we’ve always been unsure of what to call his condition.
Is he mentally handicapped, retarded, cognitively delayed, disabled, or what?
He is all those things, and more, but it’s hard to decide which of these names to take on for him. Retarded brings a lot of baggage with it, none of it positive. Handicapped sounds good, but it’s etymology is not so shiny. Apparently, in the not so distant past, people who were mentally or physically disabled earned their keep by holding their cap in their hand (handicapped) to collect alms. We’ve come a long way since those days, and I don’t know if I want the word to join us in the more humane present. Errol is delayed, but that’s really an understatement (a plane that’s thirty minutes late is delayed. Errol, more likely, has missed the flight). Disabled may be the best description with the least negative connotations.

For now, most people don’t ask about such a cute little baby, “What on earth is wrong with your baby?” Then again, I don’t know if they’ll ever ask at all. Either way, Errol certainly won’t be a baby forever (or at least not physically) so we probably need to have a preferred term ready to describe the little fellow. Of course, the best way to describe Errol is by describing Errol. Rubinstein-Taybi Syndrome, Pulmonary atresia with a hypoplastic right ventricle, visual impairment (the list goes on), crooked feet (another story), little head, sweet as a button. But who has time for a long story, and there will be plenty of times we’ll need to sum him up in a term: sweet? We’ll probably just try some terms out and see what works best. Any suggestions would be most helpful. For now, we’ll just call him Earl.