Thank You

On Saturday we celebrated Errol’s second birthday. It was a grand occasion with gifts, treats, and PUMPKIN CHEESECAKE! Through the course of the day, Errol was feted by two aunts, an uncle, four cousins, four grandparents, and four friends. It was a wonderful day of presents, but Errol’s first birthday gift came a few days before his birthday, from a friend he doesn’t even know.

The executive director of Errol’s school called us the other day. We worried that Errol might have been misbehaving in school or was caught cheating again on a vision test. But thankfully, this time, it was good news. The director called to tell us that someone had paid for Errol’s school for the rest of the year. THANK YOU! Errol’s school is public, but because our boy is under five (the magical age that makes all parents drool over the prospect of free babysitting), Errol has to pay each month. (We take it out of his allowance.) The director was calling to tell us that Errol’s tab at the school had been picked up, and that he could not divulge the identity of Errol’s patron. THANK YOU!

Anonymous generosity is the highest form of goodness, and I just want to say that if I only knew who Errol’s generous patron was, I could stop being nice to all of our friends and relatives who are all suspects in this sordid affair. THANK YOU! Beyond the gratitude I have for the gift itself, this selfless kindness has taught me that good deeds done quietly have a ripple effect on everyone in the community. The receiver of the gift suspects all of their community of benevolence and is kind towards all; the multitude of suspects, in turn, receive a gift of good will from the giftee, and then want to pass this warm cheer on to others. In only 3 more steps the love spreads and brings peace to the Middle East, withdrawal from Iraq, and wine flowing from the sink in all homes. The only loser in this whole scenario is Errol, who was hoping for milk from the sink!

It is wonderful to be enveloped by a generous and caring community. Everywhere we turn we are greeted by endless kindnesses. Now about the new suit I was hoping to get for Easter! Thank you all for the many things you have done for our little family. We are eternally grateful. And if I’m not nice to you one day, it’s just because being this grateful for this long can wear a man down! THANK YOU!

Terrible Twos

Errol will turn two tomorrow.

The other day, we went to buy Quacky Quacker (Errol) birthday presents (don’t ask, don’t tell). The only toys that seemed appropriate for Mr. Quacky were the ones designed for infants. This is a leap year, someone born on February 29th four years ago only turned one this year. Errol is a bit of an honorary leap baby, growing at about one quarter speed. With Owen's birthdays we always mark many changes from the previous birthday, but because Errol is slow cooking, you have to look much harder to see the gains of the year. But there’s nothing wrong with looking hard, especially when there’s so much to see.

Of course, it’s hard to stay sad about Errol’s recalcitrant growth when the little fellow spends half of his time smiling, and the other half laughing.

A lot of parents who have disabled kids tell us that two is the hardest birthday. It's when you have to stop fooling yourself that your kid is going to grow out of it. After two you just sort of get used to it and stop thinking about it. (We’ll see.) Also, around the time most of these kids turn two, people start asking a lot of questions about their children’s age. Public life becomes a bit of a minefield. Once their children stop looking like babies, their size and development don’t match up or make sense to a lot of puzzled shoppers and curious diners. For now, we are still mostly getting comments about how cute or handsome Errol is (and he is!), but as he gets bigger I imagine we are going to get different comments soon. We’ve been learning sign language, and that’s where a certain very special sign comes in handy.

Still, I’m looking forward to Errol’s birthday. After all, we’ll all be together, there will be pumpkin cheesecake (his favorite), and it’s bound to be better than last year, when Errol got pneumonia for his birthday. Things may not be perfect (what is?), but it’s a pretty good bet that Errol will get better gifts than pneumonia.

Owen is very excited about Errol’s birthday. Tonight, as we put the boys to sleep, Owen asked his mother, “Mama, will Errol talk?” Cary’s tears probably answered the question for him. “Why are you sad?” he asked his mama. “We just want to know what’s going on in the Little Man’s head,” she told Owen, through her tears. Errol will probably never ask the kind of question Owen asked tonight. Maybe it’s better he won’t know the answer.

I Love You

Now that Errol’s almost two (Saturday, March 8) we’re working hard on signing with him. This week we’ve been working on the learning the three best words in the English language.

The sign for “I Love You” is simple. You point to yourself: I. Then you fold your arms together across your chest: love. Then you point at the object of your love: you.

Errol loves it when we tell him we love him. (We say it a lot – we mean it a lot.)
He grins his wide grin and shrieks with joy. After we’d been working on “I love you” for a while, I noticed that Errol was pointing his little finger up in the air (sort of like Errol’s famous “number one baby” sign, if you remember those days). At first, I didn’t think much of Errol’s pointing, but soon I realized that just about every time we told him we loved him, he was pointing right back at us.

After a few days of pointing, Errol went a step farther in responding to our signing by not only pointing, but also by crossing himself (not Catholic crossing – he’s Buddhist – love, crossing). We couldn’t believe it. But he really did point and cross (and I swear I even heard him saying “IIIIIIIIIIIIIiiiiIIIIIIIIiiiiiiiIII”). The next day, I told his absolutely astounding teacher, Karen, the good news. I finished the story by saying that, of course, sometimes parents hear and see what they want to see. But as quick as a wink, Karen replied, “And sometimes they hear what their child is saying!” And she’s right. Give the little man his propers!

Errol doesn’t perform on command, and he’s been known to backslide a little, so don’t expect a show the next time you see him. But if you’re lucky, if you tell Errol you love him, and you watch carefully, you might just get the sweetest pointing and crossing in the whole wide world.

Talking by hand

Here’s a quote sent to us from Errol’s grandmother, Luly.

He who postpones the hour of living is like the rustic who waits for the river to run out before he crosses. –Horace (65-8 BCE)

We don’t know exactly what Errol’s disability is, but we’ve worried that it will keep him from talking. Errol can be a babbling brook (just ask his brother who shares his room), but it’s not certain if his gooooos and gaaaahs will turn into hellos and Obamas and other words we can decipher. The other night, after we tucked the boys into bed, we could hear Errol’s sweet (to us) noises from their room, followed by Owen’s entreaty, “Be quiet Errol,” which for some reason caused Errol to laugh uproariously, which upset Owen all the more and made him yell, “BE QUIET ERROL!” which just upped the ante and made Errol erupt into hysterics, which really made Owen indignant. It ramped up and up until finally they both fell asleep exhausted. We tried not to laugh, but didn’t succeed.

With his wonderful new teachers, Karen and Tamara, we’ve been doing all we can to help Errol learn to communicate through sign (it’s easier than talking or Morse code). And now the big payoff has finally arrived, Errol has learned the sign for more (his two little hands touching together – usually followed by a huge smile). Right now, all his signing revolves around food (who can blame him, his mama’s a baker) but one day we hope it will expand to involve other more important things in life, beer and wine.

When we think of what Errol was like, just a few months ago, it’s absolutely remarkable that he can communicate with us and tell us what he wants (and doesn’t – Washington partisanship, reality TV shows, deficit spending). We are so thrilled that Errol is signing, and it seems like a bridge has connected our worlds. Because it’s been so slow coming, each little bit feels all the bigger. Errol is so proud of himself and so are we. I think we’ll work on the sign for impeach next.

That river is running and we are crossing it.

The Enrichment Center

Last night we went to an art opening and concert just down the hill from our house at The Enrichment Center. Adults with autism, Down’s Syndrome, and other physical and mental disabilities spend their days at The Enrichment Center, painting, making music, and playing. The world of The Enrichment Center is one of the wonderful gifts we have opened since Errol was born.

One of the first people we met at last night’s opening was James. James is probably around 30 years old (it’s hard to tell), no more than five feet tall, walks with a wobble, and talks like a kid. He was wearing a suit and tie, had a bouquet of roses in his arms, and had a shit-eating-grin on his face. After all, it was his art opening and the walls of the Enrichment Center’s art gallery were festooned with his colorful paintings of houses. In the thirty or so paintings James had made, his iconic house was always the same: a rectangle with two windows, a door, and a pointy roof on top; but the wonderful colors changed in each painting; from red to blue to violet to yellow. James’ powerful paintings would fit right into a gallery next to a Klee, Miro, or Twombly. James was having the time of his life and kept hugging me every time he reintroduced himself.

James and Errol weren’t the only disabled people there. Right after we arrived, a van full of Enrichment Center clients pulled up and the riders, with great fanfare, spilled into the center. They shuffled into the gallery, took a quick lap, and made a bee-line for the food and drink (just like at any opening). I introduced myself to most of them and made conversation (it certainly wasn’t more awkward than at any other cocktail party), but I realized that I didn’t have much experience talking to disabled adults (I’ll have plenty), and that I didn’t quite know how to do it. Should I speak to them like I was speaking to a friend? A child? Like I was an ESL teacher? A bartender? Or should I talk to them just like I talk to anybody else? Not that there is even such a thing as a typical disabled person (the range is staggering), any more than there is a typical, typical person. Complications make life more interesting, and I must have been doing okay, because everyone was much more concerned with the snacks than with my tone of voice, and they all seemed to be having a great time. After all, it was their big night.

After everyone had viewed the neighborhood of cheery houses, the Enrichment Center Percussion Ensemble took the stage. I had seen the members of the ensemble awkwardly struggling through the room before their performance began. But as soon as they took their places on stage and the first notes rang out, they were transformed into a deliberate, confident, focused, and tight band. As they played, they weren’t happy or sad, laughing or crying, they were rooted in that place - completely consumed by their music. And so were we. The music was a haunting swirling, miracle of guitar, vibes, and drums marching together into the unknown. I didn’t want it to end. It did.

These were Errol's peeps, and the place was full of excitement and magic. That wonderful night was probably the first time I’ve been in the minority as a person without a disability, but it probably won’t be the last. As sweet Errol has proven, over and over again, in so many ways, we typical people are the emotionally disabled ones. After all, I wasn’t dancing, laughing, and grinning the whole time.

Errol in his stander on New Year's Eve 2007

Errol loves his stander, especially when we spin him round.

Flat as a pancake

The iron is already doing the trick, and just 24 hours later, Errol is markedly less puffy and rashy. Cary just gave him a cool little hair cut, and Errol looks fantastic. His descent into anemia was slow, and it's only now that he's back to his old self that we have realized just how much he had declined. And boy is he back. Errol is wiggling around like crazy and hooting like mad. At this rate, he'll be walking by morning. It's great to have little Earl back again. We'll all be taking iron from now on.

Pillsbury Dough Boy

I think we have finally tracked down the cause of Errol’s month and a half long puffiness. Our amazing medical sleuth, Dr. Hunsinger, thinks that Errol is slightly anemic, which, when combined with his heart issues, makes him as puffy as the Pillsbury Dough boy. She gave me a highly detailed technical medial explanation of how iron helps oxygen bond to blood molecules. I’ve heard of blood. Now what’s this molecule thing again? I’ll translate her explanation into more understandable language. “Earl’s heart don’t work so good, boy needs iron lest he look like that ol’ cat when little Buddy put that hose up his behind.” The best natural way to get iron into the system is by eating prunes or calf liver (every family’s favorite), so we’ve opted for the unnatural way: supplements. We chose the Walgreen’s children’s iron supplement that comes packaged with the cryptic name, “My Kid’s Iron.” We hope that the brilliant Doctor Hunsinger’s is correct in her diagnosis (she always is), and we can’t wait ‘til the supplements kick in, and we have our sweet little anemic Earl healthy and with all the puffiness ironed out! Thank you Doctor Hunsinger.

Curveball

For the past month and a half, Errol has presented us with an anatomical puzzle. His feet and hands have been swollen and just this past weekend he’s developed what looks like a bright red rash over much of his body. Over the holidays, we’ve circulated through the rounds of specialists trying to figure out what is causing Errol’s extremities to become what is known in medical jargon as “puffy." Our boy’s been seen now by scores of extremely smart people with the very newest technology, but despite their best efforts, no one seems to be able to figure out why the Little Man is not himself.

Tonight we took another long drive out to the county to get a fifth opinion from Errol’s extraordinary pediatrician, Dr. Susan Hunsinger, whom we trust completely. Errol is less than two years old and already his medical chart, at Dr. Hunsinger’s office alone, is bigger than an unabridged dictionary. As Curveball’s mother said, “By the time he’s twelve his chart is going to reach the ceiling.”

Everyone should be so lucky as to have a doctor as wise, brilliant, and compassionate as Dr. Hunsinger. She knows more about what makes Errol’s little body tick than anyone, although she is always the first to say that we, his parents, know him best. She uses her encyclopedic knowledge, her incisive mind, and her unending compassion to heal our son and family. We are very, very lucky to have her in our lives.

Most of the time, I’d rather have bad news than no news. But right now, no news is what we have. The French philosopher, Montaigne, advised that when we are concerned about something it is best to imagine the outcome to our worries as the worst case scenario. He argued that reaching the outer limit of possibilities will actually put our minds at ease, and that whatever outcome we face can never be worse than the worse case scenario. After all, if we expect the worst, we will rarely be disappointed.

While Montaigne’s prescription has eased some enormously difficult moments in my life, in general, I’d rather have my hopes dashed, than to live without them. And right now, it’s hard to imagine a worst case scenario with Errol, because, at the moment, we don’t even have a scenario. Which is exactly why his prescient cardiothoracic surgeon, Dr. Hines, named Errol “Curveball." The great anxiety we have always felt with Errol is the fear of not knowing. With his syndrome, we don’t know. With his puffiness, we don’t know. With his future, we don’t know. It’s hard not knowing so much. And maybe that’s what keeps pulling us back to the moment, where he is unfailingly sweet and fun to be with.

But despite the fun, the smiles, and the laughter, we always want to know. It’s our nature.

Happy New Year

Today, we started our New Year with a family walk around the neighborhood. As we rang in the new year, we talked about the many things we are grateful for. Every new year with Errol is a gift, but this year brings risk. This summer, Errol will have his third open-heart surgery. And while each of the three surgeries gets less risky, we grow more attached to him, and have more to lose.

A neighbor came over the other day, took a look at Errol’s stander and asked, “What is that?”
Quick as a wink, Owen replied, “That’s a stander!” as if everyone had a yellow metal reclining gurney in their living room. Of course, for Owen, it is normal, and so is having a brother like Errol. And I hope we can keep it that way, but surely, as they both grow older, Errol will seem less and less normal. But so are champagne, truffles, and Venice.

Errol has grown up, so much that he is starting to be mischievous (which, with him, is a good thing). How can a disabled baby be naughty? you ask – by flipping! Errol has finally discovered the ability to flip over from his stomach onto his back (most kids do by six months, Errol is 20 months) but we are thrilled Errol can do it at all (and hey, this isn’t the Olympics). Errol’s flipping is 99% wonderful, and 1% problematic – he can’t seem to stop. We put him on his stomach, and before we know it, he’s on his back. We turn him back on his stomach and before we can turn around, he’s on his back again, grinning ear to ear. This wouldn’t be a problem if Errol could fall asleep on his back, but he can’t and within a few minutes of bliss, Errol’s smile turns into a cry (yes, he cries). And we have to keep flipping him every few minutes until he finally gives up and goes to sleep. All in all, this is a great problem to have, and I have to admit that it’s fun to see Errol with a naughty glint in his eye, ready to thwart us. I’d love to have more of these kinds of problems, and if we’re lucky, one day he won’t want to stop walking and talking. Keep flipping, Little Man.

Errol is really growing up (and around and around) and I know that this is going to be a great year for him. He’s doing so many things we never dreamed he’d do, which just makes us all the more scared for him. I can’t wait ‘til the summer is over and done and we have our boy back.

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