Puzzle Pieces

I’ve written about trying to stay in the present, but I also like to know as much as I can about Rubinstein-Taybi Syndrome and what lies ahead. We are a part of a Rubinstein-Taybi Syndrome listserve with other parents RTS children (many aren’t still children, but have moved into adulthood). Although there aren’t that many people with RTS (there’s only 3 that we know of in North Carolina), the families are a tight group and are always sharing advice, sympathy, and camaraderie. My wife, Cary, our listserve liaison, gets about 40 e-mails a day from the listserve . There is a lot to talk about, and it’s always good to know when others are also carrying your burden (which is a lot more often than you’d think). It’s good not to be alone. It’s also good to share in the excitement and triumphs of life. We are always learning about Errol, but it always draws us out of our perfect present.

Tonight we learned that many RTS kids suffer from psychological disorders which, with boys, kick in around late adolescence (here I go again, hurtling into the future). There are issues with obsessive compulsive disorder, excessive anger (who wouldn’t be mad), anxiety, and other problems (of course, it’s not like typical kids don’t deal with these issues, too, it’s just more likely with RTS). It’s hard to imagine sweet little Errol suffering these maladies, but, like much about our bodies, most psychological problems seem to grow worse with age. As we are learning from our listserve posse, a lot of RTS kids get overstimulated, and parents often have to calm their environments by taking all the pictures off the walls (if their children haven’t already done this for them). Cary’s an artist, and our walls are adorned with her gorgeous photographs. It’s tragic to imagine us erasing all this beauty from our walls. But here I go, jumping ahead again. There are no guarantees on the future; bad or good. Errol could be a photo-hater or an artist, himself (probably more along the lines of Jackson Pollock than Rembrandt Van Rijn). Only time will tell. Still, every day we get a fuller view of the puzzle that is RTS, and today it wasn’t a pretty picture.