Let me preface this post by saying I do no mean to offend anyone, and am truly sorry if I do. (Also, it’s probably a red flag that I even have to write that, but here I go anyway…)
For the first 34 weeks of my pregnancy I was looking forward to a few things: 1. not being pregnant anymore, 2. meeting my baby, and 3. maternity leave. #1 and #2 are super obvious, and probably what all pregnant women (other than the freaks of nature ones that LOVE being pregnant) look forward to.
When I found out Donovan had Spina Bifida, and what we were in for, I wasn’t looking forward to #3 as much. I knew it was going to be a lot more challenging and a lot less “typical”. Whatever “typical” is. Between the NICU stay and doctor’s appointments and breastfeeding issues and general new-mother exhaustion it was six weeks before I was able to step foot in my hospital’s Mom’s Group, which mainly focused on breastfeeding. Except that didn’t work out for me, so I went, toting my bottle and received some judgmental looks from all the women sitting around the room with their My Breast Friend’s. And then their babies started fussing and mine quietly enjoyed his bottle and went to sleep. And then I was the one laughing.
Anyway, that was obviously not the place for me. I tried another mom’s group and I thought it went okay, but at that young age there’s not much of a way to avoid telling people your son has SB (and really, why should I?) and as soon as I mentioned it all I got were looks of pity. No thank you.
And then it was time to go back to work.
All this time, I had been trying to contact my local SBAA chapter, which unknown to me at the time, was in a transitional period. It took quite some time (like, a year) to finally be able to speak with someone about what might be available as far as support goes. And the answer was, not much. I was sort of shocked and saddened. I know that when D was in the NICU, there were several other babies with SB also staying. Our social worker couldn’t tell us their names because of HIPPA, but it was at least comforting to know we weren’t alone.
Anyway, all of that leads eventually to this past Sunday – our first SBAA event. I wanted it to be fun! I wanted to meet other mom’s with SB babies the same age as D. So I could ask them questions. So they could ask me questions. So we knew we weren’t alone.
Instead, it was overwhelming and discouraging. Not because of anything anyone did. I guess that because Donovan is doing so well, we’re just not familiar enough with the other end of the spectrum. I was not prepared to see so many wheel chairs, and atypical gaits, and neurological issues. I was not to see that the oldest person with SB in the room was 43. As in, there are very few people living with SB that far into life.
I’m prepared that D might not walk “correctly”. I’m prepared for braces or a walker or a wheel chair and cathing and bladder augmentation and all of that. But just because I’m prepared doesn’t mean I think it’s going to happen. Because honestly, I don’t. He’s defied all kinds of odds so far. So I guess, even though I’m fine with all those interventions and knowing they are possible, it freaked me out to see there was really NO ONE else there not affected by those things. Not a single child without bracing. Half the room was in a wheel chair. I guess I just never realized how “different” he might be?
And that makes me nervous for him. Just as right now I feel like I don’t quite fit in anywhere, I am afraid he will feel the same. He’s not “normal” enough to be considered normal. He’s not disabled enough to be considered disabled. Where does that leave him?
The only answer is, as always with Spina Bifida, I don’t know. I’m just going to have to wait and see and not try to have a panic attack in the meantime.