A while back I was contacted about participating in a study of families with spina bifida; at the time I thought it would be a great idea so I tentatively said that I'd do it. It was a relatively easy test, mostly just paperwork and a dna sample. I could do that, easily, right?
Well...not so much. Why not you might be thinking, it's very easy, you just said it yourself.
Physically this survey/study IS easy, emotionally not so much.
They send you the questionnaire so you can familiarize yourself with it before you speak to the researcher on the phone. It started out innocuously enough. Family history info, pregnancy details, general health of momma etc etc, but then they got to the harder questions. "Did you do x, y, z while pregnant?" "Did anyone in your family go prematurely grey?"(actual question-the answer to that one is yes :/) etc etc and it started to bring back painful memories from over six years ago.
I'd say that 98% of the time, I am completely and utterly at peace with Gabe's disability; I've stopped searching for answers and trying to find someone to blame for it. Long ago, I learned that there is NO sense in trying to find a scapegoat or someone to be angry with over our circumstances. Many nights after finding out Gabe was going to be born early (ON PURPOSE! Yikes) to have his back fixed, I tossed and turned worrying about the what if's and what did I do to cause this type thing. It was awful. It was quite frankly the worst part of my life and still continues to be to this day.
I have blocked out a lot of what happened in those few weeks after the diagnosis and the first few weeks of Gabe's life. I remember bits and pieces here and there, mostly because of what others have told me and from seeing pictures, which is both a blessing and a curse. Most of the memories of that time are NOT positive for me and I'm very glad I don't really remember them, but sometimes I wish I remembered more.
Reading all of these questions brought back the overwhelming grief and depression I felt when I found out about Gabe's diagnosis...and it made me wonder how long I'll be mourning what "could have been"? Like I said, most of the time, I don't even think about it because Gabe is a pretty damn amazing kid, but sometimes, just sometimes it sneaks up on me and I start to wonder just how things COULD have been and what I could have done to prevent all of this (and the answer to that question? Nothing. Absolutely NOTHING. I took folic acid, I was very healthy, I had no fevers while pregnant, neither of us have a family history, I wasn't on any drugs while pregnant or even before conceiving him. Our doctor told us in some cases, spina bifida just happens and Gabe is one of those cases)
Thankfully these moments are few and far in between because I choose to focus on how amazing Gabe is and how he continues to astound all of us including his doctors continually. I focus on the positive and what HE can do, rather than what he cannot do...