What we’ve learned in 29 years as Rett syndrome parents
Thoughts on weightlifting, wet wipes, and birthdays
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Our daughter, Abby, who has Rett syndrome, just turned 29. It’s the kind of number that makes a parent think, “Can that possibly be right?” And, “Good golly, we’ve been doing this for a long time.”
Abby may or may not care about birthdays, but if she does, she’s probably thinking more or less the same.
Abby was born in 1997, which seems like a century ago. In 1997, the first iPhone was still 10 years away. Netscape was the browser of choice, and nobody had Googled anything yet. Montreal still had a Major League Baseball team. So, much has changed in the world in 29 years. And, of course, there has been a lot of change on a personal level, too.
For Abby’s birthday, we’ve done a little stock-taking. The following are five things we didn’t know back then but do now:
1. There’s a thing called Rett syndrome. Like almost everyone else on the planet, we had never heard of Rett syndrome in 1997. We’d also never heard of it two years later, when we took Abby to a neurologist because my wife, Donna, was concerned that Abby had stopped nailing every developmental milestone and, in fact, seemed to be going backward in some areas.
“It might be general developmental delays,” the doctor told us. “Or it might be something like allergies. Or it might be this rare thing called Rett syndrome, but let’s not think about that because it’s pretty unpleasant.”
We’ve been learning about Rett syndrome — including the seizures, dystonia, loss of speech, loss of purposeful hand use, and cognitive impairment — ever since. And the doctor was right: It’s pretty unpleasant.
2. We should have joined our college weightlifting teams. If we had, we might have an easier time lugging Abby around now. She weighs 90 pounds, and we’re well into our Social Security years. We’re blessed that she still walks, albeit unsteadily, but every day still involves a lot of pulling her out of bed, picking her up off the floor, muscling her through various bathroom needs, and so on. How parents manage with children who are less mobile than Abby is beyond me. How we’ll manage as old age continues to overtake us is also beyond me.
3. Wet wipes are the greatest invention in human history. Parents of neurotypical toddlers know this, but they eventually forget it as their children grow up and become less messy and capable of cleaning up after themselves. Not so in Rett-land. It’s only a slight exaggeration to say that neither Donna nor I has been more than 3 feet from a package of wipes in 29 years. Runner-up: paper towels.
4. We’re not in control of our own lives. That’s true to some extent for everyone, but most people don’t acknowledge it; they prefer to believe that if they study hard, work hard, and don’t make too many dumb choices, they’ll get some version of the life they want.
Rett syndrome makes you realize how dependent you are on things you can’t control. You need strangers to have chosen special education as a career. You need scientists and doctors to decide to specialize in your child’s obscure condition rather than some other obscure condition. You need government officials to recognize the obstacles people with disabilities face and the support they need.
And, of course, you’re at the mercy of the disease itself. You can vow to fight this thing on behalf of your child, and get the drugs and other therapies and the eye-gaze computers and whatever else is available, but to a large degree, Rett syndrome is going to do what Rett syndrome is going to do. And it’s going to dominate not only your child’s life, but yours as well.
5. We should have skipped first grade. First grade is where basic mathematics is usually introduced — things like subtraction and, more to the point, addition. If I didn’t know addition, I wouldn’t be able to make this worrisome calculation: Abby is now 29. If, with the benefit of improving knowledge and treatments, she lives another 29 years, I’ll be 100.
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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