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.

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.

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.