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.

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 café. 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.

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?

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.

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!