Taking care of a child with Rett is tiring, but not as much as having it
It's easy for caregivers to get sucked into our 'pity parties'
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My two most recent columns were about the documentary “Silent Angels: The Rett Syndrome Story,” and how it came to be. The film was broadcast on television in 2000, the year our daughter Abby, who has Rett syndrome, turned 3. When I rewatched it to write those columns, one snippet brought me up short.
It was a comment from a woman named Maureen Woodcock who had a daughter with Rett syndrome, and also a grandson with the condition — one of the first boys to be so identified. (For decades the assumption was that only girls could get Rett syndrome.) She had just watched that grandson, Ari, die shortly after his first birthday, following a year full of struggles.
“He never learned to roll over, he couldn’t swallow and suck and breathe at the same time, and he was on a G-tube, and he had — we don’t know what they were, seizures,” Woodcock says in the film. “When Ari finally died, and gave up, and he just couldn’t go any further, it also told me how tired our girls must get, day in and day out.”
By “our girls” she meant everyone else with Rett syndrome — including my Abby, who is now 29. And that phrase — “how tired our girls must get” — hit me between the eyes. I realized that I had stopped thinking, over the years, about how tired Abby must get struggling through each day. I mostly just think about how tired my wife, Donna, and I are as her caregivers.
It’s a seductive pity party that’s easy for caregivers to get sucked into. I often feel that a lot of the posts from Rett caregivers on social media aren’t really about the child/client, though they may describe some episode the kid has had. The posts are really about the caregiver: “See what I have to deal with?”
Donna and I could be making hourly posts in that same vein lately. Abby, who is nonverbal, has for some months been in a terrible stretch of screaming and crying, sometimes all day, for reasons we can’t decipher. If it’s physical discomfort, we can’t figure out the source; she still eats normally and goes to the bathroom and such. If it’s anxiety or something similar, we have no idea what to do about it.
She often takes her discomfort out on us, hitting us or — this is the worst — grabbing our hair in her death grip, which is formidable. Note to self: Wear a hat indoors from now on. I don’t have a lot of hair left to lose.
Donna is better at keeping her cool when being screamed at or having her hair yanked out than I am; I’ve screamed back at Abby more times than I like to admit. But it’s wearing down both of us. We have hopes that an appointment next week with a new doctor will provide some solutions.
Until then, I’m trying to use Maureen Woodcock’s sound bite — “how tired our girls must get” — as a centering mantra. On a good day, it takes Abby three or four minutes to walk up our 13-step staircase. In her physical therapy sessions, if she can pick up a tennis ball off the floor, it’s a triumph. Now add to those everyday struggles whatever it is that’s making her scream and cry. Yeah, I tell myself a couple times a day, I’m exhausted by the role of caregiver. But you know who’s more exhausted? Abby.
Note: Rett Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Rett Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Rett syndrome.
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