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.
Tuesday, December 16, 2008
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.
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.
Sunday, November 30, 2008
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.
Wednesday, November 26, 2008
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.
Wednesday, November 05, 2008
Sunday, October 26, 2008
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.
Friday, October 10, 2008
“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.
Thursday, October 09, 2008
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.
Wednesday, September 24, 2008
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.
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.
Friday, September 12, 2008
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.
Saturday, July 12, 2008
The other day, as Errol napped upstairs, I head a bump coming from above. I figured it was the cat and went back to the important work I was doing. I awoke a few minutes later to the same curious bumping sounds. One bump, then another. I was perplexed, Cary didn’t do her step aerobics workout upstairs, and I had put Errol to sleep on a mat on the floor, so there was nothing he could have fallen out of. I decided to investigate.
I summitted the stairs and then tried to push open the door to the room Errol was slumbering in, but it wouldn’t budge. As I was trying to pry the door open, I heard a little laughter on the other side of the door. It was Errol. He had rolled, shimmied, and bumped his way across the room to come find me. Errol isn’t sleeping on the mat anymore, and I’m thinking about installing a lock on his door. Good work Errol. Keep it up.
Saturday, June 21, 2008
Errol has glasses. Hooray! He can see and he likes it.
It's remarkable to watch Errol watching the world. He;s been much more active and responsive. Hooray!
"The Little Professor" is very happy about his new surroundings and he looks so cute in his hip little eyewear. See for yourself.
The Little Professor in Mama's loving arms. Now it's time for the Little Professor to go grade some papers.
Tuesday, May 27, 2008
I started the computer today and put Errol about a foot away from the screen. I opened our digital photographs and scrolled through them. I showed Errol a picture of himself. He brightened. “That’s Errol!” I said, then magnified the image. Errol cracked up. I showed Errol a picture of him on my shoulders. He thought it was the funniest thing ever, and laughed and laughed. Then I showed him pictures of Owen, Cary, and more of himself. The pictures of Owen were his favorites and he doubled over as his little belly shook with laughter. Errol is, hands down, the happiest person I’ve ever met.
I heard an amazing presentation today from a conference called TED. TED is collection of brilliant speakers who help us think more deeply about happiness, creativity, poverty, globalization, and many other topics. None of the many fantastic speeches I’ve heard have been as arresting as a talk I heard today by Jill Bolte Taylor who talked about how wonders of the brain.
Our brain has two hemispheres. The right side of our brain processes all the multitude of sensations we are experience every moment. The taste of an apple, the sound of a car horn, the smell of baking bread. It doesn’t recognize ourselves as separate from sensations. The left hemisphere organizes all the information we take in and puts it into a context. It is aware of the self, which we see as separate from all our sensations. The left hemisphere always has its eye on the past and future. The speaker is a brain researcher who lost the left side of her brain to a stroke. Although the stroke was debilitating, it let her slip into a beautiful world of sensations and connection and rid her of all the stress, guilt, anxiety, and planning of her 37 years. She was awash in all the senses of the moment and couldn’t distinguish between past and present; herself and others. It was, to her, nirvana. Her experience led me to immediately think about my beautiful Errol.
I don’t have a name for Errol’s condition, and I don’t know exactly how it effects his brain, but it’s clear to me that Errol operates almost exclusively out of his right hemisphere, and lives a life that is almost completely in the moment. His life is of a near constant state of bliss. He loves the wind, the sight of his little hands, the pig snorts that I make for him, vanilla yogurt, any music, Owen jumping off his dresser, riding on my shoulders or in the car with the windows down. All kids are a little like that, and the older we get, the more we drift to the left. Errol is a constant pull back to the right and the joy that is always there waiting to be tasted.
Thursday, May 22, 2008
Errol is as near sighted as a bat. He can see less than one foot from his face, which explains why he pulls everything you hand him right up in front of his eyes. Poor little devil.
We went to see his pediatric ophthalmologist (doctor # 11) in Greensboro.
They numbed his eyes, dilated his pupils, and then twenty minutes later flashed lights at him to discover that (surprise, surprise) he is severely near sighted. While not technically blind, Errol can’t see past his nose. No more driving for Errol!
If the eyes are the windows on the soul, what does that say about someone who is near sighted?
And so now, to make matters worse, the little man is going to get eyeglasses. He’s not exactly thrilled, and judging by the way he manhandled the sunglasses they gave him for his dilated pupils, his new lenses aren’t going to stay on his head very long. Can anyone say duct tape?
The little man may not have the highest IQ in the world, but boy can he grab. He loves to grab toys, paper, food, and really just about anything he sees (or doesn’t), but most of all he loves to grab hair. If Owen so much as passes within two feet of Errol his hair is history. In fact, Errol likes hair so much that he pulls his own (he has a sweet little bald spot on the side of his head – how’s that for tenacity!) I’m worried about what Errol’s going to do to those glasses. Let’s hope they aren’t made out of hair.
As if Errol didn’t already have enough problems, now we get to add near blindness to the list. But Errol never complains (last week they took his blood and he just smiled), so I don’t plan to fuss either. I know it sounds crazy – and I am very grateful that I don’t suffer from blindness or physical disabilities – but every day, as I watch my sweet son go through life, I find myself wishing I could be more like Errol.
Great news! The doctors have given us a reprieve, and Errol will not be having his third open heart surgery until the summer of 2009. We are so excited. We feel like a huge weight has been lifted from our shoulders (and hearts). Of course, Errol will still have to go through the surgery, but this delay will let Errol get a year stronger and will allow us to enjoy this summer that we have been dreading. Can anyone say beach? As for next summer...we just won’t think about that right now (denial makes the world go round!) Thanks for all the thoughts and well wishes as we approached this dreaded milestone (we’ll take a rain check.) I think this is going to be the best summer ever.
Monday, May 19, 2008
Errol's favorite person in the whole world is his brother, Owen. Whatever Owen does makes Errol happy. A kiss, a hug, or a high five makes Errol smile, and a jump from the dresser makes Errol erupt into howls of laughter. The other day we went to the neighborhood park. Errol, Owen and our neighbor Benjamin alternated trips down the slide, and for about fifteen minutes straight, Errol was in a state of unbridled joy and laughter. Errol would just get finished with laughing at his own trip down the slide (in loving arms, of course) when Owen or Benjamin would slide past us, leaving Errol in another hysterical fit of glee. Errol has the most beautiful laugh. It starts as a - he-he-he, to himself (like he's in on a secret) then the anticipation builds and his laugh spills out into a head bobbing - gaaaaaaah ha ha ha, and finally (if things are really funny) builds into a deep and uproarious belly laugh - oh ho ho ho. It's not only sliding that makes Errol laugh. Sometimes it's a trip on my shoulders, or Owen dancing, or some unidentifiable occurrence that leaves him in stitches. It's hard to hear Errol laugh and not be infected by it. If you are ever blue, come slide with us and put yourself in a happy state.
Sunday, May 18, 2008
Errol loves to paint. He started painting a few weeks ago at school. His teacher, Karen, put Errol in his seat, slid a tray up to him, dunked his little hands in paint, and let him go to town, painting on the tray. Errol loves it. He loves the feeling of the paint, the action of painting, and the color of his designs. Above all, I believe, Errol loves the act of creation. Until now, he hasn’t had the concentration, coordination, or inclination to make things, and he’s mostly reacted to the world. This act of painting is one of his first deliberate actions. Whatever his motivation, our little Brice Marden is thoroughly enjoying himself as he makes his beautiful paintings.
Wednesday, May 07, 2008
People don’t generally ask a whole lot of questions. Many folks with disabled kids told us that when Errol turned two the questions would fly. In March, Errol turned two, and most people remained pretty quiet (at least to us.) A couple of weeks ago, that all changed.
Because of some glitch in the enigma wrapped inside a riddle that is the American health care system, the wheelchair Errol was supposed to get in September has still not arrived. !#@$!%*@!%@&!! Over spring break, Errol’s school lent us his school wheelchair for a week, and Errol immediately went from being a big kid in a stroller to being disabled. The questions (verbalized and not) started immediately. “What’s that chair he’s in?” “Can he not walk?” The ubiquitous, “How old is he?” And, of course, “why are you wearing lederhosen in the dance club, Mr. Milner?” Errol is nonplused about all the fanfare, and just smiles back at his admirers. He is, of course, exactly the same boy he was pre-wheelchair, but people’s responses are very different (you’d think they’d never seen a naked kid with a beer in his hand before!!) And, despite my son’s equanimity, all the attention makes me a bit defensive. But new things always attract people’s attention, and if the questions lead to a widening of understanding and to a few folks knowing Errol, the universe will be all the better for it.
Friday, April 04, 2008
Monday, March 10, 2008
On Saturday we celebrated Errol’s second birthday. It was a grand occasion with gifts, treats, and PUMPKIN CHEESECAKE! Through the course of the day, Errol was feted by two aunts, an uncle, four cousins, four grandparents, and four friends. It was a wonderful day of presents, but Errol’s first birthday gift came a few days before his birthday, from a friend he doesn’t even know.
The executive director of Errol’s school called us the other day. We worried that Errol might have been misbehaving in school or was caught cheating again on a vision test. But thankfully, this time, it was good news. The director called to tell us that someone had paid for Errol’s school for the rest of the year. THANK YOU! Errol’s school is public, but because our boy is under five (the magical age that makes all parents drool over the prospect of free babysitting), Errol has to pay each month. (We take it out of his allowance.) The director was calling to tell us that Errol’s tab at the school had been picked up, and that he could not divulge the identity of Errol’s patron. THANK YOU!
Anonymous generosity is the highest form of goodness, and I just want to say that if I only knew who Errol’s generous patron was, I could stop being nice to all of our friends and relatives who are all suspects in this sordid affair. THANK YOU! Beyond the gratitude I have for the gift itself, this selfless kindness has taught me that good deeds done quietly have a ripple effect on everyone in the community. The receiver of the gift suspects all of their community of benevolence and is kind towards all; the multitude of suspects, in turn, receive a gift of good will from the giftee, and then want to pass this warm cheer on to others. In only 3 more steps the love spreads and brings peace to the Middle East, withdrawal from Iraq, and wine flowing from the sink in all homes. The only loser in this whole scenario is Errol, who was hoping for milk from the sink!
It is wonderful to be enveloped by a generous and caring community. Everywhere we turn we are greeted by endless kindnesses. Now about the new suit I was hoping to get for Easter! Thank you all for the many things you have done for our little family. We are eternally grateful. And if I’m not nice to you one day, it’s just because being this grateful for this long can wear a man down! THANK YOU!
Friday, March 07, 2008
Errol will turn two tomorrow.
The other day, we went to buy Quacky Quacker (Errol) birthday presents (don’t ask, don’t tell). The only toys that seemed appropriate for Mr. Quacky were the ones designed for infants. This is a leap year, someone born on February 29th four years ago only turned one this year. Errol is a bit of an honorary leap baby, growing at about one quarter speed. With Owen's birthdays we always mark many changes from the previous birthday, but because Errol is slow cooking, you have to look much harder to see the gains of the year. But there’s nothing wrong with looking hard, especially when there’s so much to see.
Of course, it’s hard to stay sad about Errol’s recalcitrant growth when the little fellow spends half of his time smiling, and the other half laughing.
A lot of parents who have disabled kids tell us that two is the hardest birthday. It's when you have to stop fooling yourself that your kid is going to grow out of it. After two you just sort of get used to it and stop thinking about it. (We’ll see.) Also, around the time most of these kids turn two, people start asking a lot of questions about their children’s age. Public life becomes a bit of a minefield. Once their children stop looking like babies, their size and development don’t match up or make sense to a lot of puzzled shoppers and curious diners. For now, we are still mostly getting comments about how cute or handsome Errol is (and he is!), but as he gets bigger I imagine we are going to get different comments soon. We’ve been learning sign language, and that’s where a certain very special sign comes in handy.
Still, I’m looking forward to Errol’s birthday. After all, we’ll all be together, there will be pumpkin cheesecake (his favorite), and it’s bound to be better than last year, when Errol got pneumonia for his birthday. Things may not be perfect (what is?), but it’s a pretty good bet that Errol will get better gifts than pneumonia.
Owen is very excited about Errol’s birthday. Tonight, as we put the boys to sleep, Owen asked his mother, “Mama, will Errol talk?” Cary’s tears probably answered the question for him. “Why are you sad?” he asked his mama. “We just want to know what’s going on in the Little Man’s head,” she told Owen, through her tears. Errol will probably never ask the kind of question Owen asked tonight. Maybe it’s better he won’t know the answer.
Friday, February 29, 2008
Now that Errol’s almost two (Saturday, March 8) we’re working hard on signing with him. This week we’ve been working on the learning the three best words in the English language.
The sign for “I Love You” is simple. You point to yourself: I. Then you fold your arms together across your chest: love. Then you point at the object of your love: you.
Errol loves it when we tell him we love him. (We say it a lot – we mean it a lot.)
He grins his wide grin and shrieks with joy. After we’d been working on “I love you” for a while, I noticed that Errol was pointing his little finger up in the air (sort of like Errol’s famous “number one baby” sign, if you remember those days). At first, I didn’t think much of Errol’s pointing, but soon I realized that just about every time we told him we loved him, he was pointing right back at us.
After a few days of pointing, Errol went a step farther in responding to our signing by not only pointing, but also by crossing himself (not Catholic crossing – he’s Buddhist – love, crossing). We couldn’t believe it. But he really did point and cross (and I swear I even heard him saying “IIIIIIIIIIIIIiiiiIIIIIIIIiiiiiiiIII”). The next day, I told his absolutely astounding teacher, Karen, the good news. I finished the story by saying that, of course, sometimes parents hear and see what they want to see. But as quick as a wink, Karen replied, “And sometimes they hear what their child is saying!” And she’s right. Give the little man his propers!
Errol doesn’t perform on command, and he’s been known to backslide a little, so don’t expect a show the next time you see him. But if you’re lucky, if you tell Errol you love him, and you watch carefully, you might just get the sweetest pointing and crossing in the whole wide world.
Thursday, February 07, 2008
Here’s a quote sent to us from Errol’s grandmother, Luly.
He who postpones the hour of living is like the rustic who waits for the river to run out before he crosses. –Horace (65-8 BCE)
We don’t know exactly what Errol’s disability is, but we’ve worried that it will keep him from talking. Errol can be a babbling brook (just ask his brother who shares his room), but it’s not certain if his gooooos and gaaaahs will turn into hellos and Obamas and other words we can decipher. The other night, after we tucked the boys into bed, we could hear Errol’s sweet (to us) noises from their room, followed by Owen’s entreaty, “Be quiet Errol,” which for some reason caused Errol to laugh uproariously, which upset Owen all the more and made him yell, “BE QUIET ERROL!” which just upped the ante and made Errol erupt into hysterics, which really made Owen indignant. It ramped up and up until finally they both fell asleep exhausted. We tried not to laugh, but didn’t succeed.
With his wonderful new teachers, Karen and Tamara, we’ve been doing all we can to help Errol learn to communicate through sign (it’s easier than talking or Morse code). And now the big payoff has finally arrived, Errol has learned the sign for more (his two little hands touching together – usually followed by a huge smile). Right now, all his signing revolves around food (who can blame him, his mama’s a baker) but one day we hope it will expand to involve other more important things in life, beer and wine.
When we think of what Errol was like, just a few months ago, it’s absolutely remarkable that he can communicate with us and tell us what he wants (and doesn’t – Washington partisanship, reality TV shows, deficit spending). We are so thrilled that Errol is signing, and it seems like a bridge has connected our worlds. Because it’s been so slow coming, each little bit feels all the bigger. Errol is so proud of himself and so are we. I think we’ll work on the sign for impeach next.
That river is running and we are crossing it.
Sunday, January 20, 2008
Last night we went to an art opening and concert just down the hill from our house at The Enrichment Center. Adults with autism, Down’s Syndrome, and other physical and mental disabilities spend their days at The Enrichment Center, painting, making music, and playing. The world of The Enrichment Center is one of the wonderful gifts we have opened since Errol was born.
One of the first people we met at last night’s opening was James. James is probably around 30 years old (it’s hard to tell), no more than five feet tall, walks with a wobble, and talks like a kid. He was wearing a suit and tie, had a bouquet of roses in his arms, and had a shit-eating-grin on his face. After all, it was his art opening and the walls of the Enrichment Center’s art gallery were festooned with his colorful paintings of houses. In the thirty or so paintings James had made, his iconic house was always the same: a rectangle with two windows, a door, and a pointy roof on top; but the wonderful colors changed in each painting; from red to blue to violet to yellow. James’ powerful paintings would fit right into a gallery next to a Klee, Miro, or Twombly. James was having the time of his life and kept hugging me every time he reintroduced himself.
James and Errol weren’t the only disabled people there. Right after we arrived, a van full of Enrichment Center clients pulled up and the riders, with great fanfare, spilled into the center. They shuffled into the gallery, took a quick lap, and made a bee-line for the food and drink (just like at any opening). I introduced myself to most of them and made conversation (it certainly wasn’t more awkward than at any other cocktail party), but I realized that I didn’t have much experience talking to disabled adults (I’ll have plenty), and that I didn’t quite know how to do it. Should I speak to them like I was speaking to a friend? A child? Like I was an ESL teacher? A bartender? Or should I talk to them just like I talk to anybody else? Not that there is even such a thing as a typical disabled person (the range is staggering), any more than there is a typical, typical person. Complications make life more interesting, and I must have been doing okay, because everyone was much more concerned with the snacks than with my tone of voice, and they all seemed to be having a great time. After all, it was their big night.
After everyone had viewed the neighborhood of cheery houses, the Enrichment Center Percussion Ensemble took the stage. I had seen the members of the ensemble awkwardly struggling through the room before their performance began. But as soon as they took their places on stage and the first notes rang out, they were transformed into a deliberate, confident, focused, and tight band. As they played, they weren’t happy or sad, laughing or crying, they were rooted in that place - completely consumed by their music. And so were we. The music was a haunting swirling, miracle of guitar, vibes, and drums marching together into the unknown. I didn’t want it to end. It did.
These were Errol's peeps, and the place was full of excitement and magic. That wonderful night was probably the first time I’ve been in the minority as a person without a disability, but it probably won’t be the last. As sweet Errol has proven, over and over again, in so many ways, we typical people are the emotionally disabled ones. After all, I wasn’t dancing, laughing, and grinning the whole time.
Friday, January 11, 2008
The iron is already doing the trick, and just 24 hours later, Errol is markedly less puffy and rashy. Cary just gave him a cool little hair cut, and Errol looks fantastic. His descent into anemia was slow, and it's only now that he's back to his old self that we have realized just how much he had declined. And boy is he back. Errol is wiggling around like crazy and hooting like mad. At this rate, he'll be walking by morning. It's great to have little Earl back again. We'll all be taking iron from now on.
Thursday, January 10, 2008
I think we have finally tracked down the cause of Errol’s month and a half long puffiness. Our amazing medical sleuth, Dr. Hunsinger, thinks that Errol is slightly anemic, which, when combined with his heart issues, makes him as puffy as the Pillsbury Dough boy. She gave me a highly detailed technical medial explanation of how iron helps oxygen bond to blood molecules. I’ve heard of blood. Now what’s this molecule thing again? I’ll translate her explanation into more understandable language. “Earl’s heart don’t work so good, boy needs iron lest he look like that ol’ cat when little Buddy put that hose up his behind.” The best natural way to get iron into the system is by eating prunes or calf liver (every family’s favorite), so we’ve opted for the unnatural way: supplements. We chose the Walgreen’s children’s iron supplement that comes packaged with the cryptic name, “My Kid’s Iron.” We hope that the brilliant Doctor Hunsinger’s is correct in her diagnosis (she always is), and we can’t wait ‘til the supplements kick in, and we have our sweet little anemic Earl healthy and with all the puffiness ironed out! Thank you Doctor Hunsinger.
Tuesday, January 08, 2008
For the past month and a half, Errol has presented us with an anatomical puzzle. His feet and hands have been swollen and just this past weekend he’s developed what looks like a bright red rash over much of his body. Over the holidays, we’ve circulated through the rounds of specialists trying to figure out what is causing Errol’s extremities to become what is known in medical jargon as “puffy." Our boy’s been seen now by scores of extremely smart people with the very newest technology, but despite their best efforts, no one seems to be able to figure out why the Little Man is not himself.
Tonight we took another long drive out to the county to get a fifth opinion from Errol’s extraordinary pediatrician, Dr. Susan Hunsinger, whom we trust completely. Errol is less than two years old and already his medical chart, at Dr. Hunsinger’s office alone, is bigger than an unabridged dictionary. As Curveball’s mother said, “By the time he’s twelve his chart is going to reach the ceiling.”
Everyone should be so lucky as to have a doctor as wise, brilliant, and compassionate as Dr. Hunsinger. She knows more about what makes Errol’s little body tick than anyone, although she is always the first to say that we, his parents, know him best. She uses her encyclopedic knowledge, her incisive mind, and her unending compassion to heal our son and family. We are very, very lucky to have her in our lives.
Most of the time, I’d rather have bad news than no news. But right now, no news is what we have. The French philosopher, Montaigne, advised that when we are concerned about something it is best to imagine the outcome to our worries as the worst case scenario. He argued that reaching the outer limit of possibilities will actually put our minds at ease, and that whatever outcome we face can never be worse than the worse case scenario. After all, if we expect the worst, we will rarely be disappointed.
While Montaigne’s prescription has eased some enormously difficult moments in my life, in general, I’d rather have my hopes dashed, than to live without them. And right now, it’s hard to imagine a worst case scenario with Errol, because, at the moment, we don’t even have a scenario. Which is exactly why his prescient cardiothoracic surgeon, Dr. Hines, named Errol “Curveball." The great anxiety we have always felt with Errol is the fear of not knowing. With his syndrome, we don’t know. With his puffiness, we don’t know. With his future, we don’t know. It’s hard not knowing so much. And maybe that’s what keeps pulling us back to the moment, where he is unfailingly sweet and fun to be with.
But despite the fun, the smiles, and the laughter, we always want to know. It’s our nature.
Tuesday, January 01, 2008
Today, we started our New Year with a family walk around the neighborhood. As we rang in the new year, we talked about the many things we are grateful for. Every new year with Errol is a gift, but this year brings risk. This summer, Errol will have his third open-heart surgery. And while each of the three surgeries gets less risky, we grow more attached to him, and have more to lose.
A neighbor came over the other day, took a look at Errol’s stander and asked, “What is that?”
Quick as a wink, Owen replied, “That’s a stander!” as if everyone had a yellow metal reclining gurney in their living room. Of course, for Owen, it is normal, and so is having a brother like Errol. And I hope we can keep it that way, but surely, as they both grow older, Errol will seem less and less normal. But so are champagne, truffles, and Venice.
Errol has grown up, so much that he is starting to be mischievous (which, with him, is a good thing). How can a disabled baby be naughty? you ask – by flipping! Errol has finally discovered the ability to flip over from his stomach onto his back (most kids do by six months, Errol is 20 months) but we are thrilled Errol can do it at all (and hey, this isn’t the Olympics). Errol’s flipping is 99% wonderful, and 1% problematic – he can’t seem to stop. We put him on his stomach, and before we know it, he’s on his back. We turn him back on his stomach and before we can turn around, he’s on his back again, grinning ear to ear. This wouldn’t be a problem if Errol could fall asleep on his back, but he can’t and within a few minutes of bliss, Errol’s smile turns into a cry (yes, he cries). And we have to keep flipping him every few minutes until he finally gives up and goes to sleep. All in all, this is a great problem to have, and I have to admit that it’s fun to see Errol with a naughty glint in his eye, ready to thwart us. I’d love to have more of these kinds of problems, and if we’re lucky, one day he won’t want to stop walking and talking. Keep flipping, Little Man.
Errol is really growing up (and around and around) and I know that this is going to be a great year for him. He’s doing so many things we never dreamed he’d do, which just makes us all the more scared for him. I can’t wait ‘til the summer is over and done and we have our boy back.