Errol Milner Clifford 2006-2009
Errol Milner Clifford was born with a significant heart defect and a cognitive disability that prevented him from walking or talking. As we grieved the child we had anticipated, Errol’s full-bodied smile and irrepressible laugh turned our sorrow into joy, and taught us that many of the best things in life are unexpected. Inspired by Errol’s delightful spirit, friends, family, and neighbors rallied to support our family’s significant emotional, physical, and financial needs, through countless acts of selfless generosity. When Errol’s courageous heart finally failed him on December 23, 2009 we were left numb with grief. In these dark hours we listen hopefully for the echoes of Errol’s brilliant laugh. This blog is the story (starting from present and working back to Errol's birth) of the life and times of the amazing Errol Clifford.
Saturday, March 17, 2007
As we were getting ready for bed tonight, Errol's big brother Owen said, “When Errol gets bigger he’s going to go to Downtown School with me, Daddy.” I didn’t know what to say, so I just started crying (which happens a lot these days – and it’s not a bad thing either). Owen’s hopes for his brother are so normal, and so improbable (like mine, try as I might to be “realistic”) that sometimes it's just devastating to hear. Never say never, but the chances of Errol going to Owen’s school are pretty low. Still...
Owen loves his brother and doesn’t know that all little brothers aren’t just like Errol. (Of course, not all big brothers are like Owen, either.) All I know to tell Owen is, “Errol’s sick.” Which translates (I think) to “Errol’s got a fever.” I imagine different ways to tell Owen about his brother: “Son, your brother has a constellation of physical and mental disabilities resulting from a spontaneous mutation of the 16th chromosome.” And I’ve tried explaining Errol’s syndrome to Owen in lots of ways, lots of times, but it never really seems to get through (although you never know what they know, until you do know, and then it's too late). “Owen, do you know that your brother is sick?” “Daddy, let’s watch Nemo!” Which is okay for now (I hope). We want Owen to know his brother fully, but there’s no big rush. After all, Owen can’t add, write, or even tie his shoes. He’s got his whole life ahead of him to understand his brother.
****Advice here would be particularly welcome (especially from those of you who have dealt with this before, especially if you agree with me!). Please share your story (annonymously, if you prefer) on the comment space below.
In many ways, Errol’s first birthday was a compact version of his first year. His Mama, Daddy, big brother, all four grandparents, aunts, uncles, and a passel of cousins gathered around Errol to wish him a happy birthday. The whole family tree, sheltering dear little Errol. Cary had baked Errol a beautiful chocolate cake. (Despite all appearances, first birthdays are not actually for the birthday child, but, in fact, for the parents and older siblings.) We lit the candles and sang a rousing round of Happy Birthday, but as soon as the birthday boy (Owen) had blown out the candles, we looked at Errol, felt his cheek, and realized that something was wrong. We measured his temperature at 102.6 (happy birthday), and twenty minutes later were in the doctor’s office. (We should get frequent flyer miles; we visited his pediatrician seven times in February, alone.) The nurses, who know and love Errol, sang Happy Birthday as we rushed into the exam room (45 minutes after Dr. Hunsinger’s office had “closed” – she is amazing). After a thorough examination, pneumonia was diagnosed (the second time in as many weeks), and before we knew it we were on our way to Walgreen’s. (They know me by name - a dubious honor.) All in all, it was not the birthday we expected, which is what we’ve come to expect.
On this not so happy birthday, and throughout this first tumultuous year, Errol has suffered, been nurtured by dedicated and heroic doctors, nurses, and teachers, embraced by friends and family, and, throughout it all, smiled his way over bigger hurdles than most people ever face. From March 8th, looking forward, we hope that next year is better than the last. (The odds are good.) Life has been really tough for little Errol, but it sure beats the alternative.
Wednesday, March 07, 2007
Errol was born at 2:00 pm on March 8, 2007, one long year ago. These two eighths of March bookend a year of extreme highs and lows and measure a time in which we've never felt more loved. There is much to celebrate every day, but this first birthday is a most rare and special occasion in the life of our little boy, Errol. We are very lucky to have him.
Monday, March 05, 2007
Humans are built to compare things. It’s part of what allows us to survive. “Red and yellow, kill a fellow; red and black, venom lack" or "Goat sure does taste better than porcupine.” It’s good to compare, but it can get you in trouble, too.
This has been a great week with our eldest son, Owen. He’s been just about perfect. We've read books, flown kites, practiced for the PSAT. There have been a number of times his mother and I have turned to each other and said lovingly, “Could we have asked for a more perfect boy?” Which is always followed by an uncomfortable silence, and then, “And, Errol is so sweet!” Which he is. But he isn’t exactly the son we dreamed about, and Owen, (bursting with energy, funny, always singing, and gorgeous, to boot) mostly is. Cary and I never asked for a kid with RTS-- "Hey, wouldn't it be really cool to have a special needs kid?" But at the same time, we'd never unask for the joy and the light that Errol brings us all the time. He's hooting right now, he's got a cute little nose, he types 67 wpm, he never stops smiling. Often, it's the surprises in life that are the sweetest.
One year I saved all my money and flew to Italy to join my wife Cary who had been travelling in Spain. I had "studied" in Venice in college, and had been planning this homecoming trip since the day I left in 1988. When I arrived in Italy, Cary told me of the miraculous journey she had just undertaken. She had walked from Navarra to Galicia, 600 miles on a medieval pilgrimage route across northern Spain. What joy! I became more and more entranced as she told me stories of her amazing trek, and then I surprised myself, scuttling my long planned Italian vacation, and turning west to walk across Spain. It was the best trip of my life.
It's probably best not to compare too much. (After all, what good does it do?) At the same time it's totally natural (hardwiring beats willpower 95% of the time). In the end, the important thing is that Errol and Owen bring us love, and joy, and happiness (so does beer). It's just that one joy is more surprising than the other.
We were talking about econmics today in class, and I told my students that economics is about making choices in a world with limited resources. I asked the kids if they would like to live in a world with unlimited resources (utopia). Surprisingly, they all said no (although I bet none of them would have turned me down if I had offered to unlimit their choices with a wad of hundreds). They talked about the flatness of a utopian existence, and then someone in the class said that the joy in life is in the choices, the challenge, the striving. It is the very warp and woof of our struggle that gives life its shape and marks us as human. (OK, it was me who said it. It'll be on the test, too).
It's three days before Errol's first birthday and the close of his traumatic year. It's not been an easy year for our brave little man, but he is alive, and at the end of a long day of warping and woofing, our beautiful baby boy is sleeping peacefully.
Sunday, March 04, 2007
Errol is in the running for the most kissed baby ever, averaging somewhere around 128 kisses a day. Now he's learning to give the kisses back. I stick my face right up to Errol's, put my cheek up to his sweet little mouth, and wait until he opens his mouth for a big smack of the cheek. I pull my face away and The Little Man gives a high pitched squeal and smiles and smiles, I turn my other cheek to Errol and the kissing begins again. The fun can go on all day because Errol loves to give his kisses.
Friday, March 02, 2007
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.
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.