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

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.

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.

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.

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?

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!

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.

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.

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.