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.
4 comments:
Dear Jonathan,
Yeah, there's nothing like the real, gut-wrenching truth, is there? It sucks
On the other hand, it is what it is. And you are able to see the beauty in the middle of things. This is a wonderful gift. Errol being sick doesn't change the fact that life is wonderful.
It reminds me of the fact that at the exact same time, two totally opposite things can be true. My life became a little easier when I could accept that I could exist in a balance point of opposites. It's a struggle to get there. One tends to struggle. But when we can accept what it, we see that "what is" is okay, too.
Take it easy.
Love, Marigene
We met an RTS child this summer who is 12. A few days afterwards, my oldest daughter (who is 8) asked if our youngest daughter with RTS (Bethany) would act that the older child we met. I asked what she meant. She mentioned the oddities in the little girl's behavior. She said she didn't want other kids making fun of Bethany. I asked her is she had ever made fun of another child and she admitted she had (of course she had, we all did it when we were kids and joined in on the "fun," wanting to be part of the group). I then asked her how she would feel if someone did that to Bethany. She said she would feel bad. I asked her how she thought Bethany would feel. She said bad. I told her that it hurt my heart to think other children would make fun of Bethany and she said it hurt her heart too. I told her that the next time she heard kids making fun of another child because he or she couldn't do something or acted oddly, she should say, "My sister is disable and I don't think that making fun of someone is very nice." She then prayed and asked God to forgive her for making fun of other children.
I thought, what a blessing Bethany is and will be to our family. Her siblings (and her parents) will learn so many lessons from this precious girl, lessons that we could learn in no other way. And I thanked God for sending us Bethany.
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