A group of Rett syndrome fathers takes my one-word challenge
Here's how some dads described parenting a child with a serious disability
Written by |
It was, if I do say so myself, a brilliant idea, though it didn’t turn out quite the way I had envisioned it.
As I was preparing to attend the International Rett Syndrome Foundation conference held earlier this month in Minnesota, I noticed that among the agenda items for the four days was a “Dads’ Night Out” on the second evening, at which fathers of children with Rett syndrome, a group that includes me, were to have “a chance to relax, connect, and enjoy some time together off the conference floor.” We were invited to hang out for two hours at LaunchPad Golf, one of those places where you can drive golf balls in the general direction of some fake holes while drinking alcohol.
“That’ll be a quiet gathering,” I told myself, because everyone knows men don’t emote, share their feelings, or talk about anything, except maybe sports. So, I reasoned, I will attend the hangout and break the suffocating silence by taking a poll of the other dads. Since men don’t talk, I will keep it simple: I will ask them to give me one word that describes their experience as the parent of someone with Rett syndrome. I will use their responses to construct a future column, i.e. this column.
Before I headed for Minneapolis, I tested my plan on my wife, Donna. “Honey,” I said, “give me one word that describes your experience as the parent of someone with Rett syndrome.”
“Shut up and help me get this damn cap off the Daybue bottle,” she said, apparently missing the “one word” portion of my instructions but inadvertently providing an excellent summary of what life as a Rett parent is like. (Our daughter Abby, who is 29, has been taking Daybue (trofinetide), the only federally approved drug for Rett syndrome, for many months; those caps are the work of the devil.)
So I headed for Minnesota and, at the appointed hour, strolled into the dads’ golf gathering. At least 30 dads, and a few granddads, were there, and much to my surprise, they were not silent like men are supposed to be. These dads were emoting all over the place, trading stories about when and how they got the Rett syndrome diagnosis, what medications their child was taking for seizures and such, how the diagnosis had affected their jobs and domestic dynamics, and much more. My premise, it seemed, was somewhat flawed, but I executed my plan anyway, asking an assortment of the gents for one word to describe their experience as a Rett syndrome parent.
“Painful,” said one.
“Exhausting,” said another.
“Bourbon,” said a third, though it’s possible he was talking to the bartender.
If anyone had asked me the same question, though no one did, I think I would have said “daunting,” which Merriam-Webster defines as “tending to overwhelm or intimidate.” I’m not sure that I find Rett syndrome to be intimidating, but at times I certainly find it overwhelming, and I know my wife and daughter must as well.
Two fathers, though, gave me a different perspective. Both responded to my question not in the alcoholic haze of the golf outing, but later on at the conference, which may account for their more thoughtful answers. I had expected nothing but adjectives when I framed the question, but one dad gave me a noun to describe his experience as the parent of a daughter with Rett syndrome.
“Purpose,” he said. As in, finding himself a parent of a child with a serious disability gave his life a new sense of purpose.
The other dad who put some real thought into my somewhat frivolous question picked a word that can be either adverb, noun or adjective, depending on how it’s used.
“I finally have a word for you,” he said two days after I first posed the question to him at the golf outing.
“What did you come up with?” I said.
“Forever,” he said.
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.
Barry Ross Rinehart
I love the one word challenge. I’ve been on the Lowe Syndrome Association board of directors for the last 8 years now — with your permission, I’d like to employ that idea with their community. Thanks for continuing to write about Rett syndrome and raising awareness!