Amazing Brains

I started the computer today and put Errol about a foot away from the screen. I opened our digital photographs and scrolled through them. I showed Errol a picture of himself. He brightened. “That’s Errol!” I said, then magnified the image. Errol cracked up. I showed Errol a picture of him on my shoulders. He thought it was the funniest thing ever, and laughed and laughed. Then I showed him pictures of Owen, Cary, and more of himself. The pictures of Owen were his favorites and he doubled over as his little belly shook with laughter. Errol is, hands down, the happiest person I’ve ever met.

I heard an amazing presentation today from a conference called TED. TED is collection of brilliant speakers who help us think more deeply about happiness, creativity, poverty, globalization, and many other topics. None of the many fantastic speeches I’ve heard have been as arresting as a talk I heard today by Jill Bolte Taylor who talked about how wonders of the brain.

Our brain has two hemispheres. The right side of our brain processes all the multitude of sensations we are experience every moment. The taste of an apple, the sound of a car horn, the smell of baking bread. It doesn’t recognize ourselves as separate from sensations. The left hemisphere organizes all the information we take in and puts it into a context. It is aware of the self, which we see as separate from all our sensations. The left hemisphere always has its eye on the past and future. The speaker is a brain researcher who lost the left side of her brain to a stroke. Although the stroke was debilitating, it let her slip into a beautiful world of sensations and connection and rid her of all the stress, guilt, anxiety, and planning of her 37 years. She was awash in all the senses of the moment and couldn’t distinguish between past and present; herself and others. It was, to her, nirvana. Her experience led me to immediately think about my beautiful Errol.

I don’t have a name for Errol’s condition, and I don’t know exactly how it effects his brain, but it’s clear to me that Errol operates almost exclusively out of his right hemisphere, and lives a life that is almost completely in the moment. His life is of a near constant state of bliss. He loves the wind, the sight of his little hands, the pig snorts that I make for him, vanilla yogurt, any music, Owen jumping off his dresser, riding on my shoulders or in the car with the windows down. All kids are a little like that, and the older we get, the more we drift to the left. Errol is a constant pull back to the right and the joy that is always there waiting to be tasted.

The Windows of the Soul

Errol is as near sighted as a bat. He can see less than one foot from his face, which explains why he pulls everything you hand him right up in front of his eyes. Poor little devil.

We went to see his pediatric ophthalmologist (doctor # 11) in Greensboro.
They numbed his eyes, dilated his pupils, and then twenty minutes later flashed lights at him to discover that (surprise, surprise) he is severely near sighted. While not technically blind, Errol can’t see past his nose. No more driving for Errol!

If the eyes are the windows on the soul, what does that say about someone who is near sighted?

And so now, to make matters worse, the little man is going to get eyeglasses. He’s not exactly thrilled, and judging by the way he manhandled the sunglasses they gave him for his dilated pupils, his new lenses aren’t going to stay on his head very long. Can anyone say duct tape?

The little man may not have the highest IQ in the world, but boy can he grab. He loves to grab toys, paper, food, and really just about anything he sees (or doesn’t), but most of all he loves to grab hair. If Owen so much as passes within two feet of Errol his hair is history. In fact, Errol likes hair so much that he pulls his own (he has a sweet little bald spot on the side of his head – how’s that for tenacity!) I’m worried about what Errol’s going to do to those glasses. Let’s hope they aren’t made out of hair.

As if Errol didn’t already have enough problems, now we get to add near blindness to the list. But Errol never complains (last week they took his blood and he just smiled), so I don’t plan to fuss either. I know it sounds crazy – and I am very grateful that I don’t suffer from blindness or physical disabilities – but every day, as I watch my sweet son go through life, I find myself wishing I could be more like Errol.

Reprieve

Great news! The doctors have given us a reprieve, and Errol will not be having his third open heart surgery until the summer of 2009. We are so excited. We feel like a huge weight has been lifted from our shoulders (and hearts). Of course, Errol will still have to go through the surgery, but this delay will let Errol get a year stronger and will allow us to enjoy this summer that we have been dreading. Can anyone say beach? As for next summer...we just won’t think about that right now (denial makes the world go round!) Thanks for all the thoughts and well wishes as we approached this dreaded milestone (we’ll take a rain check.) I think this is going to be the best summer ever.

Laughing with Errol

Errol's favorite person in the whole world is his brother, Owen. Whatever Owen does makes Errol happy. A kiss, a hug, or a high five makes Errol smile, and a jump from the dresser makes Errol erupt into howls of laughter. The other day we went to the neighborhood park. Errol, Owen and our neighbor Benjamin alternated trips down the slide, and for about fifteen minutes straight, Errol was in a state of unbridled joy and laughter. Errol would just get finished with laughing at his own trip down the slide (in loving arms, of course) when Owen or Benjamin would slide past us, leaving Errol in another hysterical fit of glee. Errol has the most beautiful laugh. It starts as a - he-he-he, to himself (like he's in on a secret) then the anticipation builds and his laugh spills out into a head bobbing - gaaaaaaah ha ha ha, and finally (if things are really funny) builds into a deep and uproarious belly laugh - oh ho ho ho. It's not only sliding that makes Errol laugh. Sometimes it's a trip on my shoulders, or Owen dancing, or some unidentifiable occurrence that leaves him in stitches. It's hard to hear Errol laugh and not be infected by it. If you are ever blue, come slide with us and put yourself in a happy state.

Errol Painting

Errol loves to paint. He started painting a few weeks ago at school. His teacher, Karen, put Errol in his seat, slid a tray up to him, dunked his little hands in paint, and let him go to town, painting on the tray. Errol loves it. He loves the feeling of the paint, the action of painting, and the color of his designs. Above all, I believe, Errol loves the act of creation. Until now, he hasn’t had the concentration, coordination, or inclination to make things, and he’s mostly reacted to the world. This act of painting is one of his first deliberate actions. Whatever his motivation, our little Brice Marden is thoroughly enjoying himself as he makes his beautiful paintings.

Disabled

People don’t generally ask a whole lot of questions. Many folks with disabled kids told us that when Errol turned two the questions would fly. In March, Errol turned two, and most people remained pretty quiet (at least to us.) A couple of weeks ago, that all changed.

Because of some glitch in the enigma wrapped inside a riddle that is the American health care system, the wheelchair Errol was supposed to get in September has still not arrived. !#@$!%*@!%@&!! Over spring break, Errol’s school lent us his school wheelchair for a week, and Errol immediately went from being a big kid in a stroller to being disabled. The questions (verbalized and not) started immediately. “What’s that chair he’s in?” “Can he not walk?” The ubiquitous, “How old is he?” And, of course, “why are you wearing lederhosen in the dance club, Mr. Milner?” Errol is nonplused about all the fanfare, and just smiles back at his admirers. He is, of course, exactly the same boy he was pre-wheelchair, but people’s responses are very different (you’d think they’d never seen a naked kid with a beer in his hand before!!) And, despite my son’s equanimity, all the attention makes me a bit defensive. But new things always attract people’s attention, and if the questions lead to a widening of understanding and to a few folks knowing Errol, the universe will be all the better for it.

Piano

Errol and I had a music date yesterday.
I sat at the piano and played for him and he just sang and sang.
Errol loves live music.

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.