Many years ago, my parents and I volunteered to be participants in a study conducted by Duke University’s Center for Human Genetics. The purpose of the study, which I understand is still going on today, is to isolate the gene(s) responsible in the development of neural tube defects, which include encephalocele, anencephaly, and, of course, spina bifida.
Duke is a prestigious university that is renowned for its medical research. The Center for Human Genetics has presented its findings so far at SBA conferences and events.
According to the Web site, Duke Hospital houses one of only 40 “federally funded comprehensive cancer centers,” among other advanced medical treatment facilities.
Dedicated to finding cures and treatments for many serious illnesses and conditions, these are the unsung heroes of the medical industry; the people in the labs who are doing behind-the-scenes work to benefit the community, and also the world.
I know I’ve been dedicating a lot of time in the past few entries to writing about Masha, the child in Russia who is up for adoption. Well, I guess that before I heard of her, I hadn’t really given much thought to spina bifida as an international issue, and how children with spina bifida in other countries often face harsher rejection and are ostracized. They aren’t given that much hope.
On the other side of the spectrum are people like me. My parents couldn’t possibly love me any more than they do. They have given me every opportunity available under the sun, and if there have ever been pessimists who believed I wouldn’t make it, they chose to ignore them.
So what it comes down to is that I’ve realized I’ve been given a gift that other children in my situation weren’t, and it’s up to me to use this gift to help others. One of the issues I’ve struggled with a lot is feeling guilty over the fact that I can walk, while so many with spina bifida can’t. I know, it probably sounds absolutely ridiculous to many of you, whether you can walk or not. Still, I’ve often wondered why God chose for me to walk. Of course, I always pray that I will be able to take care of myself enough to preserve this ability, but I don’t feel any more worthy of it.
Maybe that’s part of the reason why I like to be an activist. Maybe I’m trying to compensate for the hardships I was spared. Or maybe I just have “enough spina bifida” so that things like lack of wheelchair accessibility and incontinence bother me.
For whatever reason, He wanted me to be privy to a host of struggles that would lead me to this point. And if there’s anything I know about God (which is not much), it’s that if He brings me to it, He will bring me through it.
I hope someday, Masha will be able to say the same thing.
спокойной ночи (spo’koinoi ‘nochi) = “Good Night” in Russian (which I totally Googled just now!),