Caught between two worlds.

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.

::blank stare::

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.

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3 Comments Add yours

  1. Laura says:

    Hey Erin!!

    I honestly did not notice until you started following me on Twitter that you have a blog! It’s awesome, very well-written and insightful.

    If I’ve learned anything the past 23+ years with SB, it’s this. The best thing you can do for Donovan is to not even think the word “disabled.” (As you get to know me better, you will learn I loathe the word with a passion!)

    He is not, and never will be “disabled.” I’ve seen broken-down cars on the side of the road that are disabled. The adorable, precious little boy you introduced me to on Sunday is not disabled. =-)

    The best way for you to show him how competent he is in this world is by expecting nothing less of him. My parents have always kept the bar really high for me, and I think it’s kept me sane– and productive. They don’t expect any less of me because I have SB; on the contrary, they expect more because they know I can deal with more.

    Also, I know how hard it not to worry that he’ll be “different.” What is different? EVERYONE is different! Donovan isn’t different because he has SB; he’s different because he is Donovan, the way you are different because you are Erin. I shake my head every time I hear people using the words “different,” “differently-abled.” We’re all differently-abled, as we weren’t all born to do the same things.

    LOL, I’m off my soapbox now. Please don’t take this comment as a way of rejecting your ideas. I’m just hoping my own perspective of having lived with SB up to this point will help you deal with the unpredictability ahead. Life is unpredictable. Period. There are no disabled people, only disabled environments.

    And, rest assured. I self-cath, and I use a wheelchair for college, and I used leg braces until I was 18. But it hasn’t stopped me from doing anything I’ve wanted to do. So, think “happy thoughts!” I’m rooting for you, and for Donovan. 😉

    Laura

  2. Erin says:

    Laura, meeting you was the highlight of that event for me. I assure you!

    I love your soapbox, people telling me how it is, and hearing perspectives. Keep them coming. I take them to heart. 🙂

  3. Gretchen says:

    Hi Erin…

    I just stumbled across your blog and I LOVE it 🙂

    I am also the mom of a special child with SB, and I SO RELATE to what you are saying here. And the sad fact is that my son is almost 10 and I still feel the same way alomst daily! He falls in the middle and there are so many people who say I didn’t raise him correctly and that is why he is differnet, and there are so many more that get on me because his SB isn’t “that bad”. I don’t know what to tell you, expet seek out those like YOU! God gave us special kids becasue he knows we can handle it (even when we don’t know it, he does!)

    Looking forward to reading more from you 🙂

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