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.


Wednesday, December 19, 2007

Million Dollar Baby


Over the years, I have tried to guide my choices by the utilitarian principle that whatever is done, should benefit the most people. For example, in deciding what charity to support, a utilitarian would choose the one which will have the biggest impact on the most people. Simple.

We live in the richest country in the history of the world, where technological wonders abound. We are fortunate, but we are few. Half the world lives on less than 2 dollars a day (that’s over three billion people), and a billion people live on less than a dollar a day. One dollar a day! Each year, malaria causes over 1 million deaths, (one child dies of malaria every thirty seconds in Africa, alone) but this deadly disease can be prevented with a simple $3 mosquito net, which, unfortunately, is out of the grasp of much of the world.

Errol is a million dollar baby. After his third heart surgery this summer, his total medical tab may well surpass $1,000,000; which could buy a lot of mosquito nets (333,333 to be exact). If we spent that $1,000,000 on mosquito nets, basic health care, and rudimentary sanitation, thousands of kids could be saved. Is Errol worth more than 1000, 5000 kids? He is, to me; but what about to the rest of us?

This is not to say that I don’t think we should save kids like Errol. We should! (After all, Errol’s $1,000,000 is chump change compared to the amount of money we spend on cosmetics, video games, or wars - Iraq runs well over $1 billion a week.) But these life and death equations put me into something of a philosophical pickle. Could we get a bigger bang for the buck? The answer is pretty clear, which means that I either need to change my utilitarian philosophy, change my actions, or just admit that I’m doing a bad job of acting on my beliefs.

Or, there could be another way. Perhaps the same generous impulse that saved Errol’s precious life, could embrace other kids, no matter where they live. I know that we aren’t going to give every kid in the world a million dollar heart, but maybe we could just give them a $3 mosquito net. If we can share the goodness that saved our beautiful son’s life (three times) with others, Errol’s life will benefit the most people.

If you want to help with children’s health, for free, you can cut and paste the following link.
http://www.thehungersite.com/clickToGive/home.faces?siteId=5&link=ctg_chs_home_from_ths_home_sitenav

Saturday, December 15, 2007

Waiting

When I’ve got Errol at home it’s easy for me to get distracted (dishes to wash, clothes to fold, uranium to enrich), so it’s always a treat to get to take Errol to the doctor (there are plenty of opportunities) where we can spend lots and lots of very focused time together in the waiting room. Yesterday Errol and I went on a date to Baptist hospital (he loves it – he starts hooting as soon as we get into the garage) for his biannual immunology checkup and oil change.

You get to wait a lot at the doctor’s office. After we checked in, we moved from the main waiting room, into an interior waiting room, into an examination room where we got to wait some more. (The magazines get older and worse as you move inside the belly of the whale.) All this waiting used to make me mad, but I’ve come to enjoy it, and realize that waiting is actually good for me: my heart rate drops, I stop rushing, there are no clothes to fold, bills to pay, quesadillas to cook, and I’m able to turn my attention solely and squarely on the one thing that’s most important. But since Judge Judy wasn’t on yesterday, I got to hang out with Errol.

Little Earl is a delight to wait with. We have a couple of favorite waiting room games that we play. The first is “the doughnut game.” Errol sits in his stroller, and I spin him around and around in the waiting room. We make a few circles to the left, with Errol’s blonde hair flying, and then we stop, boom, “He, he, he!” laughs Errol. Then Errol and his hair are off to the right until we suddenly stop, boom, “He, he, he, he!” Now it’s off to the left again, then back to the right. Now Errol is beginning to get the game: left, right, left, right, and thinks it’s pretty damn funny (just wait ‘til I do, left, right, left, left, right, right- he won’t believe it!) We repeat the game until my arms give out (always well before Errol’s laugh gives out). Then, because we’ve got time galore, we play another game called “Let’s read War and Peace.” After we finish Tolstoy’s masterpiece, the doctor is still not ready, and we start another game called “Six foot baby.” I put Errol on my shoulders, where he looks like such a big boy, and he grabs my hair like a rein. I walk, dance, or circle (it doesn’t really matter what I do, because to Errol it’s all the funniest damn thing that’s ever happened) and he laughs and laughs, “he, he, he.” Errol loves his bird’s eye view and the proximity to my hair (hair just about tops out Errol’s happy list). After I wear out (again, months before Errol) we sit back down and mull over the causes of the Franco-Prussian War, the effects of American farm subsidies on West African grain prices, and the future of Russo-Sino relations (you know, just normal father and son chit chat). After our light banter, we have yet to lay eyes on the doctor. When the doctor finally comes in we are pretty sad to have to wake up and end our games.

After the immunologist examined Errol (about 30 seconds), she sent us down to the phlebotomists (vampires) for some labs (blood). The past few years have weaned me of my needlephobia, and today I watched as the phlebotomist (what a euphemism) took blood from poor little screaming Errol. (When he was tiny, he didn’t cry when he was stuck; now he screams bloody murder, which, I think, is a good sign of cognitive development, but hard to watch.) I haven’t experienced a more impotent feeling than watching my child in pain, my knowing there is nothing I can do to make it better. Luckily this blood draw was only a three minute (felt like three hours) ordeal. I asked the phlebotomist if she had ever seen a parent pass out; she said no, but that she had seen plenty of them cry with their babies. I can understand that.

Back in the waiting room, there was a raggedy father, unkempt and unshaven, bending over his wheelchair-bound child. I couldn’t see the child’s face, but I was able to see his sweet father hovering above him, stroking his hair, talking to him, trying to comfort him. It was a very touching scene. You could see the love between them. When they were called back to the lab, the father wheeled his son around and I could see that the boy was afflicted with a very serious syndrome. His head was bulbous, he was strapped tightly into his reclining wheelchair’s restraints, and he had a completely blank look on his face. I looked at his eyes for a sign of light, and didn’t see anything. But that was me looking; clearly his father saw something in his boy no one else could. That daddy knew his impassive boy, what he liked, and how to comfort him in this traumatic moment. It was beautiful to see two people communicating in such a quiet but loving way.

Sometimes Errol gives out of gas and hibernates inside himself, far from us. I imagine that when people see Errol, with his hand hovering an inch above his face, staring blankly into space, that there’s nothing going on inside him. Perhaps some folks wonder why I am talking to this little lump, swinging him around, reading books he can’t possibly understand. One of the great joys of parenthood is the ability to know the exact meaning of the slightest movement: a raised eyebrow, a clenched jaw, a barely audible coo. It is a rare gift to know someone in such an intimate way.

I hold Errol and then lift him up, up, up onto my shoulders. Errol leaves the unknown world of his hand, clutches tightly to my hair and lets out a squeal of joy. Everyone in the waiting room is smiling.

Monday, December 10, 2007

Swallow Study


Errol went to the hospital for a swallow study this week. This may sound like a test to determine if Errol is a bird (he’s not), but it’s actually a test of Errol’s ability to eat. When we were first told that Errol had low muscle tone I thought mostly about how it would effect his ability walking, moving around, and picking things up. In fact, the way that low muscle tone most intrudes on Errol’s life is in his difficulty eating and speaking. Because Errol has weak throat muscles, it’s easy for him to get choked up on his food, which instead of heading towards the digestive system, goes right down his windpipe, which can cause (and has caused) pneumonia. We, of course, want Errol well, so we hoped the swallow study would diagnose what’s wrong so that we can fix it.

It’s a fun study to watch (definitely beats a colonoscopy). After we got decked out in radiation-proof vests, I fed Errol barium-laced food (just like granny used to make) and we watched an x-ray of Errol swallowing the food in real time. (Reality TV show producers take note, and drop me a line!) The swallow study found that Errol can only eat foods that have a certain consistency (goodbye steak tartar, hello milkshake!) and recommended a therapy where Errol’s neck will be hooked up with a bunch of electrical stimuli which will very gently shock his throat into action. I guess he’ll have to stop smoking.

The therapy is designed to help with digestion, but I hope that it will have the fringe benefit of helping Errol talk. For little Errol, talking doesn’t seem to be a brain problem as much as a muscle problem. He can understand a bunch of words, it’s just saying them that is not happening (yet!).
Errol understands:
Milk
Eat
Mama
Daddy
Owen
Hollah!
Food
Swing
Spin
National Intelligence Estimate
Sleep
Nap
Doggie
Cat
Grandma
Granddad
Louly
Papa
Outside
Car
Audrey
Anne
Paula
Hi
High five
All you can eat breakfast buffet

So after we get him eating better, the next goal is improving Errol’s language ability. That’s not to say that we don’t communicate. Errol does lots of communicating with his sweet face, warm smiles, and middle finger. In fact, the sweet noises that he makes when he is happy are probably just about my favorite thing about him. As I massaged his back after his bath he let out a long, “ahhhhh gooooooo gwooooooooh!” And today, after a particularly rewarding sneeze he let loose a loud, “Whooooooooooah!” I’m feeling pretty hopeful about Errol eating and speaking one day (not at the same time). As hard as we work to engage him, as much therapy as he gets, and as much as he wants to connect, I’m sure that one day Errol will speak to us in words, and then he can stop shooting me the bird.

Thursday, December 06, 2007

Space Flight


I was just thinking about the first animals in space. Weren’t you?

First there was Laika, the Communist dog, shot into orbit by the Soviets on November 3, 1957. Little good her fame did her, as she died in space. She was followed by the first Americans in space: two mice, Laska and Benjy, who managed to reenter the Earth’s atmosphere, but weren’t recovered (if they had only had AAA). Then there were the All-American monkeys, Able (female) and Baker (male) who not only went to outer space, but made it back. Sadly, they didn’t have much time to celebrate their triumph; Able died a few days after she returned. Did Baker mourn his astronaut colleague, Able? Did he smile as he remembered their hours of weightlessness spent floating around their tiny capsule?

Animals feel pain, but because they can’t predict or even consider their future, they can't suffer. Because they lack the ability to anticipate or imagine the absence of life, the death of a rabbit, for example, even a really cool rabbit, is less tragic than the death of a human (even a celebrity chef). Without self-awareness, there is pain, but there is no suffering, and suffering is one of the things that makes us, for better and for worse, human.

When Errol was a small pup in the hospital, he would hardly cry, even when his nurses were performing the most horrible procedures on him. As his nurse would prepare his tiny arm for an IV, apply the tourniquet to expose his veins, swipe the alcohol swab to sterilize his arm, leg, foot, or forehead (all of the things, that in me, would bring about pain, even before the physical pain), sweet, innocent Errol smiled and smiled (as I cringed for him) until the very moment the needle violated his soft skin. And then, on the other side of the procedure, as soon as the pain eased, Errol would be back to his happy ways, as if nothing bad had ever happened. What would it be like to forget not only all the bad things that happen to us, but also the good? Would we choose to live without memories of broken arms, spats, loneliness, anxiety, but also without a record of hugs and kisses, family vacations, gastronomic delights, beautiful music, a snowy day, joys and loves? In the hospital, we were happy that Errol was free of anxiety, dread, and suffering, but without self-awareness, we had feared there would always be a huge gap between us.

Errol is growing up. Last night we put Errol down to sleep on his tummy, and Owen and I finished reading a book as we waited for Errol to drift off. But Errol had other plans, and soon he was on his side. I watched Errol out of the corner of my eye, and kept reading to Owen. Before we knew it we heard a proud little giggle. We looked over and there was Errol on his back! We congratulated Errol and sang his praises before we put him back on his tummy. He was so proud. We all went to sleep happy! When we went to get Errol this morning he was back on his back, grinning from ear to ear. There is suffering in memory, but there are so many wonderful things that come with it, too. Every day, Errol becomes more like us, and although there is a loss of innocence, we welcome Errol to our tragic and beautiful world.

Tuesday, December 04, 2007

Stress


Now that it’s December and I’ve got time to catch my breath I’ve been thinking about stress (what a fun topic).

It’s true that Errol is probably not going to get to enjoy many of the wonderful things typical people enjoy, but he’s also not going to be encumbered by many of the worst parts of normal life.

One of the great burdens of modern life is how difficult it is to live in the moment. Our moments are so often filled worrying about things like money, the other line at the grocery store moving faster than ours (why didn’t I chose line 7 @#*%#*!!!), making that light (drivers are crazy), 401K plans (yikes), plumbing, and the National Intelligence Estimate, that we can hardly enjoying the moment (which, when you think about it, is all you really have). I’ve traveled around the world, and I can assure you that we Americans are a seriously stressed out people.

Errol is about as stressed out as the Dalai Lama after a few drinks. He just doesn’t let things get to him. He is our little Buddha. People spend years on spiritual journeys, meditating, medicating, and reading self-help books, just to try to get like Errol: in the moment, centered, serene, happy.

Don’t get me wrong. Anticipation can be a lovely thing (Hot Toddies at 8 tonight, that new red tunic that's in the mail, the smell of dinner cooking), and it’s smart to plan for the future (note to self; wear underwear to work); but only so much. Ideally, I would trade some of my future for Errol’s present, and I’m trying.

Errol’s life, which stretches from happy moment to happy moment, is something I want to emulate, and the more time I spend with Early Bird, the more his joy rubs off on me. And it’s not just me. It’s remarkable how happy people are when they hold Errol. Although out little champ weighs in at about 24 pounds (he’s a hoss), most folks don’t want to let go of him. After all, how often do you get to hold joy in your arms?

Monday, December 03, 2007

Errol Laughing at his Daddy Singing a Tom Waits Song

Errol Laughing at his Daddy Singing a Tom Waits Song. Enjoy!

Errol Laughing at Owen Jumping

This is a video of Errol laughing that we shot back in June. Enjoy!

Spring


I had begun to give up hope on our hibernating swallow tail caterpillar. It had been well over a month since Owen had placed our caterpillar friend in his glass bottle incubator, and he was looking very dead. I almost threw his glass house away.

November started as a disappointing month. Errol’s developmental pediatrician, Dr Christiaanse, had diagnosed Errol at the developmental level of a five month old, and he was acting like it. Errol had been sick, and just didn’t seem to be growing up. We were deeply discouraged. I think he felt it, too.

Then things slowly warmed. We would plop Errol, tummy side down, on his zebra striped blanket (he’s always a fashion maven), place his noise making devices in front of him, which he can activate with a slap, and sit back to listen to the beautiful cacophony of sounds – his music cube plays a few bars of a Mozart sonata, followed by a recording of Owen saying, “have a terrific Wednesday Errol!”, then the sound of a toy car horn honking, followed by a few more bars of Mozart, then a couple more of Owen’s announcements, “have a terrific Wednesday Errol!” (Errol is going to be confused about his days of the week. I think we can live with that), and then a last little Mozart scherzo. It’s a beautiful sound, especially when we think that he couldn’t have done any of this just a few months ago. After Errol’s symphonic tour de force we roll Errol’s sleek yellow stander into the room and place Errol on its padded surface. We strap Errol in snuggly, and then slowly flip the gurney up so that Errol is suspended upright. Errol looks around and then gives us a wide grin. (I want to rig the stander so that we can flip Errol around and around – I can’t imagine why his physical therapists aren't keen on my plan). Once Errol is “standing”, we slide a little shelf into place right below his arms so that he can scramble his toys around or fix himself a cocktail. Always vigilant Cary even read about how vibrations help stimulate muscle development, and disassembled one of Errol’s bouncy chairs, and brilliantly attached its vibrating mechanism to Errol’s stander in the hopes that it might help build his muscles. (Now he knows how a milkshake feels.) Errol is on a roll. The other day, Errol’s grandmother put him in his crib on his tummy and came back in to find him, amazingly, on his back. Go Errol.

We are thrilled at Errol’s progress. The slower the steps, the more momentous each tiny one is. We have our good days and bad days, but more and more often I catch Cary saying, “Errol is going to walk!” Which is exciting, because what Cary wants, Cary gets. (Are you reading this, Errol?) Errol seems less and less like a baby and more and more like a little boy, and that’s great!

I was fretting about the caterpillar the other night, when Cary told me that swallowtails can hibernate throughout the winter and then turn into butterflies in the warm spring. (I didn’t tell her about how I almost threw away our butterfly) Spring will arrive, slowly but surely. Hope blooms eternal!

Monday, October 29, 2007

Cocoon


Cary and Owen planted carrot seeds in the garden this year, and patiently watched them poke through the dirt and grow towards the hot summer sun. Towards the end of August, the young leafy carrots attracted a host of Swallow tail caterpillars. Every day, we would watch the beautiful caterpillars with their rings of green, black, and bright yellow, slowly eat their way down the carrot greens. The caterpillars were bulking up on carrots so they would have the strength to build their cocoons for their slow transformation into butterflies. We decided to bring one of the caterpillars into the house so we could watch its amazing transformation at close range. We read about the process and outfitted a glass bottle, equipped with a branch for the little guy to hang his cocoon on, carrot leaves to get him through the night, and a mini-bar for: you know. What more could a caterpillar want? Owen named him “Calla”. We kept vigil outside Calla’s house to watch him change.

Errol doesn’t grow on a straight line. He seems to take one step forward and then two steps back. A week ago we went to our pediatrician. I was thrilled when she told us that Errol had reached the developmental level of an eight month old. Errol’s being only ten months behind schedule was reason to celebrate! But this week, we took Errol to a different pediatrician, one who specializes in developmental delays, who painted us a different, less rosy picture. She said that Errol has developed to the point of a five month old (we lost three months in one week!) Sometimes I feel like we are moving in reverse, and I think that Errol is never going to grow up. Errol has taught us (forced us) to be patient. In fact, Cary says we aren’t patient at all, we’re just hanging by a thread, in limbo, waiting.

Errol’s big brother Owen is a very special child, himself. One of his most rare and wonderful traits is his active imagination. Owen loves (and demands) stories. It’s one of the main ways we communicate (that and break dancing). In Owen’s mind, the line between past, present and future is often blurred (I get that way after a few too many, but that’s a different story). Sometimes, the subject of the stories is his brother, Errol. “Daddy,” Owen will say, ”tell me the story about when Errol was big and we went to Africa.” Or, “Mama, tell me about the time Errol was bigger and we played together.” Owen’s just saying what we are all hoping, dreaming, and waiting for, but it tears a hole in my heart to hear him anticipating things that might never happen. These are hard stories to tell without choking on the tears.

The swallow tail has sewn himself into his cocoon, which hangs by a thread to the stick in his glass house, in our kitchen. We watch him every day as we wait for him to spread his wings and fly. He’s been in there for three or four weeks now, and we are beginning to wonder if he’ll ever come out of his cocoon, but we haven’t given up. It’s hard to be patient (or whatever it is), but day by day, we are learning to wait.

Friday, October 26, 2007

Adaptation


Humans have an amazing ability to adapt (if we didn’t our species would be long gone).

When Errol was first diagnosed with his syndrome, we were grief struck. The bad news came on my 38th birthday, and Cary and I cried and cried all day. We were devastated. We felt as if we had lost a child (which was silly, because we hadn’t, he was right there, the same kid he had been the second before the doctor walked in with the diagnosis). Still, we felt bereft. And then the next day, Errol was still Errol, (his diagnosis hadn’t changed him), and we were all fine, especially sweet Errol. He never skipped a beat.

There have been numerous studies on the emotional effects of dramatic changes in people’s lives. People who lose limbs (where did I put that damn arm?), for example, usually return to their pre-amputation levels of happiness and satisfaction, after only a few months (not that you should try it). And it’s the good along with the bad. Lottery winners, too, flush with millions of dollars, return to their baseline levels of happiness (or unhappiness) within a few months, just like the amputees. We humans reset quickly and make due. I guess it’s a survival response to a world of full of surprise and danger.

Nothing is for certain, not even a genetic mutation on the 16th chromosome. Last month, when Errol was undiagnosed as having Rubinstein-Taybi Syndrome, we felt like the rug (one that we hadn’t wanted in the first place) had been pulled out from under us. Sometimes the bad is better than the unknown (Celine Dion). The new news stung. We felt like our world (having been turned upside down once before) had been turned upside down, yet again (which despite the laws of physics, didn’t exactly leave us right side up). We were utterly distraught one moment, and then, all of a sudden, we were fine, and still are (Errol never blinked). Because we have to be, and humans adapt, but most of all, because no matter how you label him, Errol is Errol, and he’s the sweetest kid I’ve ever known.

We’re all undiagnosed, in some way, and we all get used to it.

Saturday, October 13, 2007

Recipe


Errol turned blue (not sad, the color) at school Thursday, not all blue, just a little bit (mostly his face, feet and hands). His teachers are so brave. If one of my students turned blue I'd panic, and probably turn blue myself (actually, one of my students has blue hair - it's an art school - but that's a different matter). Blue babies, as these heart babies are often called turn blue when they overexert themselves: pooping, laughing, running (we’re not there yet), chopping wood. As soon as Errol turned blue his teachers watched him and the clock like hawks (they’ve been told not to panic if he is blue for just a few minutes), and then when they couldn't stand it any more, they called Cary who swooped in and took him to the amazing Dr. Hunsinger, who was as cool as a cucumber and said that Errol was just dealing with a little virus (when kids get the chills from a fever they preserve their core heat by borrowing blood from their extremities, which then turn blue with envy. Voila, Blue Baby.

So Errol's just got a little virus, and he's feeling better already, and looking a lot less blue. Errol is our little blue Zen master – sensei - and today’s lesson was how to be calm. The more time I spend with Errol, the more I learn not to worry about little things, which gives us more room to enjoy big things; like swinging. Errol was feeling so much better that we went to the park today and swung, and laughed, and swung some more, which is a really big thing.

Speaking of big things, here is the current recipe for Errol’s bottle.

4 oz water warm (easy)
2 scoops baby formula (he loves it)
1 packet of thicket (drink thickener. Less filling tastes great)
2.0 ml Axid (anti-reflux medicine)
1/2 tsp probiotics (just like grandma used to make)
1/2 tsp flax seed oil (it's not for the flavor)
1 packet fructalose (makes him poop)
1/2 St. Joseph's aspirin (for the heart)
1.0 ml children's liquid vitamins (for the ladies)

Shake well and bottoms up!
And it all tastes great to Errol, and goes down smooth.

Thursday, October 11, 2007

Architecture


In college, I could never make it to class or do any work when the weather was beautiful, or when a fantastic new experience beckoned. I believed that life was short (and it had been), that today could be my last (which is true), and that I should spend it joyful (and I did). After twenty three years (give or take a few weeks) of living for the day, I kept not dying (which was a good thing). I realized that, though I could die, at any moment (which is true) probability was on the side that I would probably wake up alive the next morning (so far, so good). So I left my ephemeral days behind and set out to make something a little more permanent out of my days that just seemed to keep on coming. I began to work, adding the days up to something bigger than a day. It felt good, I had momentum. I was an architect of something important. But building has its downside too, and part of the spontaneity and joy was the marrow of my life was slipping away. The days kept adding up, but when you have more of something, each part seems smaller.

And then something remarkable happened: I had Owen (and later, Errol) and something very biological and raw overtook my mind. I felt like my building was done (my biological duty had been completed, the genes passed on) and that I could crawl off and die fulfilled. But, at the same time, because of my love for my boys, I had never felt more of a reason to live. Nature was done with me, but I was only just getting started.

Which brings us back to the start. Now that I was done building, Owen and Errol taught me, once again, how to live in the moment.

At first, a child’s mind is not equipped to think beyond the moment, the present is hard enough. And so that is precisely where they dwell, right between before and after. And how they inhabit the moment! (Which can be awful, when you are sick and exhausted and their bodies have been inhabited by demon banshees, and the moment stretches out ahead of you endlessly.) But mostly there are those glorious moments when you lose yourself in their joy, which becomes yours. You don’t live vicariously, you live. Today, Errol on the swing, laughing until his voice became hoarse. Loving this new sensation of hurtling through the air at full speed. With the wind in his hair (and this, a boy who can’t even crawl!) suddenly propelled into the air, laughing, and laughing, and laughing. It was a rare and beautiful space he pulled me into as I pushed him. And I never would have, without him, been a part of that flow. And then there is Owen who I tickle until he can not stand it, and then I tickle him some more, just to the point of ecstasy. His laughter melds with my own as we howl and roll on the bed outside of the trap of time. These boys bring me the greatest, simplest joy. The most joy of my life since I too was a boy. I am so grateful to them for what they give me. And Errol, dear Errol, as much as he is growing up and getting better, I think (and hope) that he will always live a great deal of his life in the moment. And Owen, sweet Owen, is lucky, like us, to have, beautiful Errol who will help lead us back to that happy moment on the swing, again, and again.

Monday, October 08, 2007

Errol is rolling in support of the American Heart Association


Greetings,

As you probably know*, my son Errol was born with pulmonary atresia, a severe heart defect. It was only through the compassion, brilliance, and heroic work of his doctors, nurses, and therapists that he is alive. The life saving work of Errol's medical allies is made possible by the generosity of the American Heart Foundation.



Everyone knows someone affected by heart disease or stroke. For those I love, I will be walking in this year’s Heart Walk. I have set a personal goal to raise funds for the American Heart Association and need your help to reach my donation goal. We are raising critical dollars for heart disease and stroke research and education.



You can help me reach my goal by making a donation online. Click on the link below and you will be taken to my personal donation page where you can make a secure online credit card donation. The American Heart Association's online fundraising website has a minimum donation amount of $25.00. If you prefer to donate less, you can do so by sending a check directly to me.



Your donation will help fight our nation’s No. 1 and No. 3 killers—heart disease and stroke. You are making a difference. Thank you for your support.

Login to visit my personal web page and help me in my efforts to support American Heart Association - Winston-Salem, NC

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Some email systems do not support the use of links and therefore this link may not appear to work. If so, copy and paste the following into your browser:

http://heartwalk.kintera.org/faf/r.asp?t=4&i=211605&u=211605-187986523&e=1252081655

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Jonathan Milner


*Some of you have already gotten this message and made generous donations. Sorry for the repeat.

Exceeding Expectations



Here's the good news. Part of the reason that Errol’s geneticist, Dr. Saschi, undiagnosed (yes, I made that word up) Errol with RTS is that he has exceeded many of the RTS benchmarks. For example, Errol is way beyond the RTS parameters on the height and weight growth charts: he's now 50% height and 25% weight (with a few more trips to Bojangles I'm sure we can get him over 50%). There were also a couple of physical characteristics for kids with RTS, which he has now grown away from (wide toes, wide thumbs, etc). I want to be clear, Errol is not typical, he has a profound syndrome (we just don't know what it is) and I'm not naive/in denial enough to think he will suddenly become developmentally typical. But we feel thrilled that Errol keeps making progress and exceeding expectations. And, above all, beyond al his physical and developmental progress, his greatest gift: his happiness, is still in abundance, ABUNDANCE. Just spend an hour with Errol and you'll see.

Sunday, October 07, 2007

Anxiety


Errol is undiagnosed. He is no longer our son with Rubinstein-Taybi Syndrome (our apologies to those of you who were so lovely and generous to learn all about the syndrome we thought he had), now he is just Errol. His undiagnosis has erased a year of what we thought we knew about him. For four days now, we’ve been drifting away from knowing Errol through his ex- syndrome towards knowing Errol as he truly is. From prescription to description. All expectations are up in the air, and surprisingly (perhaps naively) we feel good about his RTS ceiling being lifted (although you never know what it will be replaced with). But who ever knows about anything, really?


This is one of my favorite A.R. Ammons poems


Anxiety


The sparrowhawk
flies hard to

stand in the
air: something

about direction
lets us loose

into ease and slow grace




You might think our direction is gone now that we don't know Errol's diagnosis, but instead we has been given direction as we dissolve into the grace of knowing Errol as he is now.

Thursday, October 04, 2007

Undiagnosed


Cary just had lunch with a friend whose child at the Children’s Center has an undiagnosed syndrome. As we talked about their lunch, Cary and I agreed about how difficult it would be to have a child who was undiagnosed, and tha we felt very lucky to know (more of less) what we were dealing with.

The next day, Errol went to visit our wonderful geneticist who originally diagnosed him with Rubinstein Taybi Syndrome. After the examination and tests, the doctor told Cary that she has revised her diagnosis and that she believes that Errol does not have Rubinstein-Taybi Syndrome (and I just learned how to spell it).

Our first reaction was disbelief, distress, and disappointment. To me, the only thing worse than a bad diagnosis (most of the time), is no diagnosis, which is what Errol has. Errol’s identity, our expectations (albeit diminished) vanished. We suddenly felt adrift and discombobulated. I felt like I had been punched in the chest.

That was the first ten minutes. Later, my mood lightened. After all, Errol is not an abstract diagnosis, he is a sweet boy with a serious heart defect, wacky kidney troubles, and a whole host of cognitive and physical developmental disabilities. Nothing about Errol, and how we treat him, has changed.

That’s not to say that we feel happy. The few expectations, the parameters of his life, we clutched at are gone. We knew the percentage of RTS kids who talk, walk, the stories of what they are able to do as adults. We had met RTS kids. All this research does little to inform us of Errol’s possibilities.

But we do know this: Errol has an unnamed genetic syndrome, that is chromosomal, and structural (in other words, the architecture of his brain is formed and can not be “fixed”). And the really good news is that his syndrome is not degenerative, in other words, he is going to grow and get better. To put a really good gloss on it, there are now no limits (good or bad) on what Errol may become (the bar could raise, or it could lower). Which is all the more reason to focus on him, on the moment, and forget the future (easier said than done). We can use therapy to maximize his potential, we just won’t know how far it can take him (but who does).

The bottom line is this; we still have the same son who we love so very, very much (and more each day). His doctors have always treated his symptoms not his syndrome, and we have always loved him, not his identity. We will treat him no differently; emotionally, physically, cognitively, it’s just that we have lost our footing for now. Maybe we will get a diagnosis one day, maybe we will live enough in the moment that we won’t care. Right now, my head is full of possibilities (not all good) and all I can do is hope for the best.

Thursday, September 27, 2007

Eight(een) Months Old


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

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

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

Saturday, September 22, 2007

Flow



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

But why is he so happy?

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

Memory



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

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

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

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

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



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

Monday, September 17, 2007

The Eyes Have It


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

Thursday, September 13, 2007

Skating


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

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

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

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

Monday, September 10, 2007

First Words


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

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

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

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

Errol at Work


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

Sunday, September 09, 2007

Welcome to Holland


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

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

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

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

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

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

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

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

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

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

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

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

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

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

Friday, September 07, 2007

Kisses


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

Flipping Like Pancakes


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

Thursday, September 06, 2007

Slowly by Slowly


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

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

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

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

Saturday, August 04, 2007

Punctuated Equilibrium


Punctuated equilibrium is a theory in evolutionary biology that evolution doesn’t proceed in a straight line, but rather moves in fits and starts. Errol (and most children, I believe) has grown in just this way: a slow burn most of the time, followed by a sudden great leap forward. This isn’t always the easiest thing to watch, because with Errol, I’m always scared that he is going to be stuck right where he is, permanently, unable to walk or talk (we’re not real concerned about his ability to smile or poop). So when it seems like Errol is sitting still, I try not to panic, and think of him, instead, preparing for his big jump. Today was a good day for the Little Man. If we surround him with pillows, and prop him up, Errol can “sit” up on the sofa. He loves the feeling of being up on his own, and smiles the whole time. I always try to be grateful for all I have (my family, my friends, my work, soy milk), but watching Errol so proud on the sofa, and so hard at work, my gratitude enlarges.

This is a picture of Errol and his cousin, Rosabelle, sitting up on the sofa.

Friday, July 27, 2007

Happy Birthday Brother


Errol's big brother Owen turns 4 on July 28. Owen is a wonderful big brother. He loves Errol, and is almost, almost, almost always sweet to his little brother. Errol smiles every time Owen gives him a kiss, tickles his tummy, or shares a smoke with him. Let's give a shout out to my main man, OWEN! Happy fourth birthday.

Seeing is believing


Rubenstein-Taybi Syndrome affects about one out of every 700,000 people, almost exactly the size of the average US congressional district (646,952), which means that, theoretically, each person with RTS has their own congressional representative. Errol does, it’s Mel Watt D-NC 12. Although Errol’s not registered with any political party (give him 200 months), he likes Mel’s position on health care and foreign policy (Errol’s a dove), and plans to vote for him in 2024 (and just in case you were wondering, and felt awkward asking, there are no poll tests in this country anymore, and anyone with any IQ can vote).

Given the frequency of RTS, there’s probably somewhere around 11.4 folks like Errol in our state, alone. We recently met the first non-Errol person with RTS. It was quite a moment. There’s always a tiny part of me, no matter how much I deny it, that secretly harbors the idea/hope/delusion that Errol really doesn’t have Rubenstein-Taybi Syndrome (yeah, right), is just going through a phase (it’s a long one) and will snap out of it and grow up just fine (I know, it’s crazy). A big part of my dangerous little denial was dispelled when we met Errol’s RTS friend. Errol definitely has Rubenstein-Taybi Syndrome. Here’s the good part: Errol’s friend, who is four, can walk (!!!!!), communicate with signs and pictures, is sweet as can be, and generally has a swell time (of course, everybody is different, but it’s good to know what’s possible for little Earl). Here’s the bad part: Errol’s friend is four, and she still has RTS (it’s not contagious, and it doesn’t go away), in other words, we’re all in it for the long haul. Errol’s going to still be an RTS kid at age four (and five, and eighteen, and, if we are fortunate, forty five). Don’t get me wrong, I knew all of this, of course. I knew full well that Errol was an RTS kid, it’s just that it’s easy to believe what you want to believe (ice cream will make me shed those unwanted pounds), and hard to believe what you don’t want to believe (we all will eventually die). Until I met another person with RTS I was able to pretend, but now, the game is up, because, as we all know, seeing is believing.

Thursday, July 05, 2007

Patient Patience


We went to see one of Errol's many doctors yesterday. He's got more docs than Sudan has (sadly, this is not much of an exaggeration – and with my travels oversees and work for social justice, an idea I’d like to explore in later posts). Errol sees a pediatric cardiologist, immunologist, plastic surgeon, podiatrist, cardio-thoracic surgeon, nephrologists, surgeon, pediatrician, ophthalmologist, dingologist (I made that one up), development pediatrician, did I mention his therapists (I’ll save that for later) and that’s just the ones on the top of my head. A fleet of exquisitely trained professionals. Yesterday he saw Dr. Christiaanse (she’s really great), who gave him an exam that lasted over one hour (think back to the last time you spent that much time with your adult doctor-keep thinking). I’ve had some amazing doctors (Dr. Lisa Evans saved my life and without her we would have zero children: whoot whoot!), but generally, there is something very special and different about these wonderful pediatric doctors, and we send out our thanks to the universe every day for the amazing people that have kept our little beautiful boy alive and happy. I asked Dr. Christiaanse the question I always promise myself I won’t ask: “So is he going to walk?” And like any good doctor, she declined to answer my questions. I don’t blame her, I’d do the same thing (not that anyone’s asking me), but she did say this. “You’ve got lots of time.” And she’s right (if there’s one thing Errol has taught us, it’s to slow the hell down.) The doctor said that as a rule of thumb, if they sit by four they will walk. I asked her if she thought it would help if Errol quit smoking. She thought I was kidding. So Errol has a while, and he’s only 15 months old, he’s holding his head up, he’s a hard worker (you should see how proud he is of his accomplishments), and he’s down to a pack a day. So we will be patient, but oh how we hope our boy will walk (and dance) one day.

Monday, July 02, 2007

Number One Baby


Errol has a favorite new habit. He holds his right hand in the air as if to say "Number One!!!!" Whenever our little champ sticks his finger up we start to chant, "We're number one, we're number one!" It just eggs him on. Here he is after the big victory!

Gratitude


I wrote earlier about the many Buddhist monks who meditate on their gratitude. There are so many ways I am grateful for Errol:
his radiant smile
his enjoyment of life (he had his first ice cream this week. he didn't complain)
his pride in his accomplishments (he's rolling side to side these days!)
his pure joy
his rootedness in the moment

Errol is our little monk (he wears a 2 T habit). We are so very lucky to know him.

Beach bum


We've just been to Edisto Beach in South Carolina with Cary's family. Edisto is a natural wonder, full of live oaks draped with Spanish Moss, bright green marsh grasses, and sparkling waters. One evening, Cary and I paddled out in the tidal marsh as the heat of the day faded. Dolphins played in our wake as the full moon rose over the inky water. Errol slept peacefully back in the house. the beach is a hard place for Errol. The water is too cold, the beach too hot. It's hard to bike, or even stroll in the heat of the day. Still, he doesn't complain. and seems to enjoy everything we do. As he grows hardier, we will hope that he can do more. Here we are starting out on a short lived jaunt.

Sunday, June 17, 2007

These are a few of my favorite things: Part I


I love the wind on my face, and on a boat there's not much between me and the wind. Here I am on the motor boat Grandad built. I'm the one in the hat.

Monday, June 11, 2007

A typical day for an atypical boy


I’ve taken to calling Errol a boy. He’s a few days shy of one year and three months, so that moniker is probably right on. A typical day for our sweet Errol looks a little like this.

When Errol wakes up around 7:00 (he has slept as late as 8:30!) he is ready for a bottle of “milk”: rice cereal and formula mixed with anti-reflux medicine, prevacid (Sounds great. I think you can get this at the Whole Foods Juice Bar). Then it’s time to change his wet diaper and get him all ducked up for the day. If things are going well, Errol might sit in our arms while we all eat breakfast, if it’s a normal day, Errol lies happily on his favorite mat while we feel guilty about not holding him, as we gulp down breakfast. Errol’s prized mat has an aquatic theme (for the parents, not the kids, who probably don’t give a flip about the seashore) that’s got smiling seahorses (do they even have mouths? Would they smile if they did??), happy fish (another lie), and the most beatific starfish you’ve ever seen (the only ones I’ve seen are not so beatific, they’re dead). The nice thing about the mat (other than its biologically optimistic theme) is that it has an overarching foam tube from which to attach plastic toys for Errol to play with (his favorite is a picture of him with his brother that he can spin around). After our leisurely 3 minute breakfast it’s off to work for daddy and off to the learning factory for the boys. Daddy gives hugs and kisses all around as he heads down the street at a pleasant trot, late again to school.

Mama then scoops up the boys and their lunches and hauls them all out to the car/bus where they dash off to schools. The school drop has become a pleasure, and it’s a real thrill to watch Owen walk into school all by himself (an amazing feat, he is getting to be such a big boy) and a joy to deliver Errol to his teachers/aunties Anne, Paula, and Audrey. At school Errol is still doing vision, physical, occupational, speech, and (my favorite) music therapy. Apart from all the therapy, he spends time in circle, singing, playing, eating, pooping (like night follows day), and preparing for the SAT. It sounds exhausting, but because of all the stimulation, energy, and excitement it gives him, school is probably the highlight of his day.

This is the time Mama Cary works. She’s makes the world’s most amazing sandwiches (the most delicious, fresh, and creative ingredients on her gorgeous homemade foccacia) which she sells at a local cafĂ©. After her whirlwind of cooking, Cary then repeats the whole pickup thing in reverse about three hours later. If stoplight Karma is in gear, and her foot is heavy, Mama can race home in good enough time to qualify for the Le Mans Grand Prix. Back home, after food and trips to the bathroom, it’s off to bed for the Little Man and to quiet time (hora tranquila) for Owen. During the nap hour’s respite, Cary gets her reward for all the backbreaking work: time to clean the kitchen. Cary really deserves an award for all she does (and so beautifully). Daddy sashays back home just in time for the end of nap and then it’s play time before dinner. In the warm months we go to the pool for a quick dip, during the rest of the year, we run out to the children’s museum (a museum for, not about, children) the library or the bookstore. Then it’s a race for the home stretch: dinner time, pajama mania, bedtime stories, and finally we end the day with Errol’s song: “Good night, sleep tight, wake up bright, in the morning light.” Owen’s sense of humor is emerging and he loves to change random words to “lava”, “swimming pool”, “poopy”, or whatever else is on his mind. As we sing, Errol looks up at us with grateful eyes, because after a day like this he is ready for sleep. Then it’s rinse, repeat, and do it all again the next day. It may sound crazy (because it is), but it really is (most of the time) the most wonderful thing.

Saturday, June 09, 2007

When I Grow Up


Every night we all four sing a song as the boys go to sleep. "Good night, sleep tight, wake up bright in the morning light." It is like a sleeping pill for the boys (and us, too). Tonight, after our song, as the boys were kissing each other goodnight, Owen suddenly said, "Mama, When I'm a big boy, I'll be able to hold Errol in my arms." And he will. Sometimes my heart grows as big as a house.

Summer Plans


It’s summer. Today was the last day of school for our boys (yeah! yikes!). We celebrated this achievement by buying Owen his first bike, and by giving Errol a nice fat nap (is there really a better gift imaginable?). Although their celebrations were on very different scales, both boys were thrilled and surprised by what they got. As much as we plan (and I am a champion planner), surprises are often the height of life. Let’s do some math. Could it be that joy = life + surprise? Whereas, happiness = expectations met. Joy > happiness. No, I wasn’t a math major, why do you ask?

Because of his brain’s wiring, Errol’s life is full of surprises, which means that he is often in a blissful state. Could there be a better place to travel this summer?

Wednesday, June 06, 2007

Life and Death


It was a lovely early summer day, 85, a brisk wind, and not a cloud in the crisp blue sky. And so, as we often do, Errol, Owen, Cary and I went to the pool. After our refreshing swim, as we were leaving, we noticed a commotion in the pool, and looked up to see that a young boy was drowning. A lifeguard jumped into the deep end of the pool and pulled the struggling boy up, up, up, out of the water and back to life. The boy is fine now, thanks to the heroic lifeguard.

There have been many times when Errol’s doctors and medical team have pulled him back from the edge of life. Dr. Hines, Dr. Hunsinger, Dr. Cnota, Kari Crawford, Dr. Raines, and Dr. Turner are all heroes. Sweet Errol is alive thanks to their training, brilliance, and devotion.

This weekend, a heart patient got the call they had long awaited. A donor heart had been found. It was a perfect match. The patient was rushed into surgery. Two surgeons, two transplant technicians, and two pilots were on a plane bringing the heart back to the awaiting patient. Tragicaly, the plane plunged into Lake Michigan, and all aboard were lost. One of the two doctors was Dr. David Ashburn, a young cardiothoracic surgeon who had trained with Dr. Hines here in Winston-Salem. We know, very well, the healing life these doctors give the world. What a cruel and tragic loss.

Asking questions


On a walk today, a young neighbor approached me. She was nervous, and I could tell that there was something heavy on her mind. We had never talked about Errol before, she had learned about his condition, and wanted to know more about him. It’s a hard conversation to start, and there really isn’t a tactful way to begin. The only thing to do is to just ask - which is what she did (with kindness and sympathy). I told her Errol’s whole story: the heart, the brain. It sounded a little like Dorothy’s friends in The Wizard of Oz (except that Errol has no shortage of courage). I don’t always ask the right questions, or know quite what to say, but as far as I’m concerned, it's nice to be asked, and I am always grateful to connect, illuminate, brag. Dialogue leads to understanding. Silence separates. Errol rocks!

Still, a word of caution about questions. My sister in law was 8 months pregnant, and quite obviously with child. People would come up to her in the grocery store and ask her when she was due, and with a straight face, she would say. "What do you mean? Due?" They would run. RUN! I would. On the other hand, one time, someone I know asked a woman who looked about seven moths pregnant when she was due. "Five years ago!" Spat the angry woman. One does have to be careful with questions, but still, don't hesitate to ask about Errol. I'll give you a good answer.

Monday, June 04, 2007

Little Playah!


We made this shirt for Errol.
His smile says it all.
Ladies, puhleeeeeeezzze!

High Five


I’ve been a teacher for over a decade, but I’m only now really beginning to understand the mechanics of learning. It comes from watching Errol learn in slow motion. I’ve recently begun an important pedagogical project teaching Errol one of life’s most essential skills: the art of the high five. I lay Errol down on the bed, put my hand about half a foot above him, and say, “High five, Errol. High five!” Whereupon Errol breaks into a gigantic full body grin. “High five, Errol” I repeat, and he clasps his stubby little hands to his mouth in delight, “wheeeeeeeee!” We both start to smile and I raise my hand above him higher, palm down. “Wheeeeeeeee!” He says, and I respond, “High five, Errol!” Sometimes, not every time, but most of the time, Errol will extend his fist towards me and I will reach down and give it a little slap. As soon as we make contact, I congratulate him with a resounding “Yeah, Errol!” and a big kiss. We repeat this over and over again until we are both satisfied with each other’s progress. This all may seem like a useless exercise, but the gears in his sweet little head are grinding, and (I hope) we are laying the foundation for more important skills (like making gang signs with our fingers), but if not, hey, we’re having a great time. High five!

First Haircut


Errol's mama gave him his first haircut the other day. Look how big and handsome he is!

Thursday, May 31, 2007

Laughing out loud


One day, Errol may talk. For now, at 14 months, there are no words, but there is plenty of laughter. Today was an especially uproarious day: Mama's songs, Errol's bouncer (think baby, not bar), and his favorite dinner (lima beans and sorrel - go figure), made him shake with laughter. Errol's happiness is audible and ubiquitous. I write Errol's story because Errol can't, and although he has no words (yet), Errol's smile tells you all you need to know.

Friday, May 25, 2007

Errol's Favorites


Errol is a happy kid. There's just a few things that Errol doesn't like: shots, poopy diapers (who does), the Bush administration's foreign policy (he thinks it's wreckless).
Errol likes most things, but there are a few things he really loves (his hooting lets you know). Here's a couple of his all time favorites (in no particular order).

Mama
His hand (mostly to look at, but also for the occasional snack)
The dog (Frenchie licks him all over-he loves it)
His brother, Owen
Singing
Daddy
Daddy Singing!
Flourescent lights (go figure)
School (hoot! hoot!)
Zen buddhism (not really)
The game where we put a towel over his head (it sounds horrible, but he really likes it) and then sing "Where is Errol?" and then pull the towel away to reveal a smiling boy
Sitting up (he's getting so strong)
Strolling
Eating (Peas!)
His grandparents
His pinwheel (he loves it!)
His teachers
The wind on his face (the fan is his favorite substitute)
His other hand
His uncles, aunts, and cousins
Naps
Blogging
Music

Errol and Owen




















Errol and Owen adore each other. Owen is so gentle and sweet with his little brother, and Errol can just about stop looking at his hand long enough to smile for his big brother. What could be so fascinating about that hand, Errol? Someone asked if Errol sucks his thumb, I said, "No, he eats his hand." And judging by the amount of time his entire hand spends in his mouth, it certainly must be yummy.

Thursday, May 24, 2007

The Children's Center


What if every child were lucky enough to have a school like the Children's Center? They would all be known, challenged, helped, hugged, cheered on, cried over, laughed with, and loved. Errol's school is like an extension of our home. He is cared for by his teachers/aunties Anne, Audrey, and Paula, who treat him like their own child (Errol reciprocates, and treats them like family). The warmth spills beyond the classroom, and we feel love from everyone we encounter, from the amazing principal, Mike, to the wonderful curriculum coordinator, Carol. We feel like the luckiest parents in the world to have our son at the Children's Center. I have worked my whole life in schools (some of them truly remarkable), yet I have never been in a place as magical as the Children's Center. Every time I walk into Errol's school I feel such hope, optimism, and love that I get teary eyed. Errol loves it as much as I do, and (unlike me) he starts to hoot whenever we pull in to the parking lot at the Children's Center (does he see it, smell it, hear it? We don't know). If every child were lucky enough to have a school like Errol's, what a wonderful world this would be.

Owen holding Errol


Owen loves Errol and Errol loves Owen. They are very lucky to have each other, and we are lucky to have them in our lives. Owen is a wonderful big brother. Sometimes we spend a lot of time and energy on Errol, but does Owen complain? No. Does he file suit in federal district court? Yes, but it's just a phase. In fact, Owen is a wonderful big brother who dotes on his little brother, "Earl". He sings to Errol (Ring of Fire), kisses (not bites) and holds him (with both hands). So far, no gunfire has broken out, and the cease fire seems to be holding.

Errol's New Cousin

Errol’s aunt Anna and uncle Peter just had a baby; Errol’s cousin, Silas. When I met Silas he was three days old. It’s a huge privilege to be with someone so new to the world, and I held him for a long time. As I held Silas, I couldn’t help but remember Errol’s first days. We were in the NICU (Neo-natal Intensive Care Unit) awaiting his first open heart surgery (day five). We were nervous as a cat, sleep deprived, and overwhelmed. But we had it easy. Errol was stuck full of tubes (sometimes five or six at once), covered with heart monitors, catheterized, with a breathing tube down his throat, and having his blood drawn every couple of hours, all in a room full of constant lights and alarms.

Silas was the healthy baby I had expected Errol to be. In many ways he was already more well developed than Errol; his muscle tone on day three wasn’t much different from Errol’s on day 441. Sometimes I get jealous and I just want Errol to be normal. I don’t know how he feels about it. I’ll ask him some day. I can’t imagine what he’ll say.

Tuesday, May 22, 2007

Nowhere Man


Errol spends a lot of time looking at his hand (try it some time, there are worse things to look at). He holds his hand at arm’s length (it would be hard to hold it elsewhere) and stares and stares (he could do this for hours). What does he see? What is he after? Where does he go? When Errol looks at his hand he is gone from us, is somewhere else, nowhere else, in another world. When Errol leaves us he is not sad, not happy, just blank.

Boom! And then suddenly, for no apparent reason Errol snaps back into our world, recognizes us, a huge grin crosses his face, he is happy, he is one of us.

I mostly think of Errol as just Errol. Our son, Owen’s brother, Lucy, Joe, Dean, and Fred’s grandson, Anne, Paula, and Audrey’s student, the boy everyone wants to hold, the kid with the amazing hair (did you bleach your baby’s hair??? They really ask. We didn’t). But other times I snap into the realization that my son is retarded, damaged, alien, special, and I get sad that Errol leaves us for a place we don’t understand and can’t visit. Then I get mad that I can’t connect with my son, that my own flesh and blood seems more different from me than my dogs. But what you gonna’ do? There’s no guarantees in life (and besides, I lost the receipt). And then I stop thinking, and see the little boy lying there, my sweet and beautiful son, my Errol, and I start singing to him, or telling him stories, reading him books (I know, he can’t read, but I love Philp Roth), coaxing him back. And as long as he is with us, we are both happy.

Monday, May 14, 2007

Happiest person in the room


The goal of life is to get older, which will, of course, eventually kill you. There's just no winning. But there is a way to slow down the inevitable, and that is to live in the moment, which is right where Errol is. Some times I think that Errol's in on the world's biggest secret, which, I guess, is why Errol is usually the happiest person in the room. See for yourself.

Sunday, April 15, 2007

Parole


Errol was released on parole this afternoon, and he's slowly recovering from his category 5 virus. We think he'll be back at school by Wednesday, and able to compete in the 2008 Iditarod. Although it's rainy and windy and cold, life is good here on the outside. The routine of life is such a pleasure after even a relatively short hospital stay (Friday morning through Sunday afternoon). It's not that we aren't grateful for the health that the hospital restores to our boy, and the wonders of hospital "food", it's just that staying there is about as much fun as global warming. We'll see you in Alaska!

Saturday, April 14, 2007

Hospital Redux

Errol's back in the hospital. He's got a nasty stomach virus, one that most folks would bounce back from quickly, but that has laid little Earl low. Every malady is magnified for Errol. He's had two trips to the Emergency Department this week, and this second one has landed him in prison. Errol's first two hospital stints (no pun intended-think heart) were excruciating, but now that we know him so much better (his big laugh, his sweet smile, his proud hand waves, his flawless eye for mid-century modern design, his exuberant good humor), the fear is greater. We want him back. The doctors think he will be available tomorrow (Sunday). We are hoping for the best.

Monday, April 09, 2007

Waving to Errol


“Hi, Errol.” I say, and wave to him. He looks away. “Hi, Errol.” I raise the pitch higher. I wave to him again. Errol wiggles and looks perturbed. “Hi, Errol” Up on the i in hi and then back down to the l in Errol, like a roller coaster. He brightens and focuses on me. I wave harder, thumb to forefinger, exaggerating the motion, over and over again, inches from his eyes, my hand, like an alligator's jaw snapping shut. Errol is watching, wondering what’s up with Daddy. I repeat this waving four, five, twenty-seven times in a row and then suddenly Errol grins and balls his little hand into a fist and releases it, balls it back again, then releases it. Errol gets it! He has a hand, just like Daddy, and he can snap his fingers shut just like Daddy. And for some reason, Daddy is grinning like crazy and shouting something to Mama and his eyes are wet. Errol flaps his little fingers back at me, and I wave in response, all the while saying “Hi, Errol!” Louder and louder, and now we are both smiling, and Errol, slowly but surely, is learning to communicate.