Isolation.

The last few weekends I’ve been really busy, all the time. At work. At parties. Everywhere. It just seems like a very social time right now. And there’s something I’ve noticed. It’s been happening the last year, subtly. Without me realizing it. But I guess so many new people in such a short time span will do such a thing.

I feel like I am being marked. Tagged. And isolated.

Why? Because my son has a disability. Something about that just makes people so uncomfortable. Maybe something about how I’m so matter of fact about it. Or how I occasionally even make a light-hearted joke about it. (Not in a making fun of him sort of way . . . in the way that I joke about not doing Florida Pre-Paid because between the Spina Bifida and the fact that he’s half Hispanic, he better get a scholarship!) I’m not really sure what it is, but it makes me sad.

I don’t want this to sound like it probably will, but I don’t want to feel like I can only make new “mom-friends” with women whose children also have disabilties. Don’t get me wrong, every single one I’ve met has been an amazing person and mother. But I don’t want to be so absorbed by that world that I cannot ever just have a conversation about my kid being a kid, instead of discussions about shunts and braces and wheelchairs. There are so many abnormal things about all of this that I need, and want, some level of normal.

But I mention the word Spina Bifida, and right after the look of pity, or horror, I see a frozen face and an awkwardly shifting person trying to find the nearest escape. I don’t even mention half the things we go through to people because I am so sick of seeing that face.

So, that is where I am. At almost a year old, I find myself with all the same friends I had before. I love and treasure each and every one of them. But I do wonder what is different about me, about my situation, that I have no new play dates with new mom friends and new “normal” babies.

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4 Comments Add yours

  1. Cassie says:

    I know that feeling and that look from other people. To me Caleb is more like any other child than he is different. I would like to talk about the “normal” things too sometimes. It can be easy to wrap yourself in the world of special needs.

  2. Frances says:

    Wish I was there to be your not-mom friend. Get somebody awesome to fill my not-mom friend void. A bonus: not-moms probably don’t know what spina bifida is. We think it’s like some new hot sling all the moms are getting these days.

    In your word cloud it says “jesus knitting.” sweet. actually, the more I look, the more I love that word cloud. “babies make you confused babies make you fat breaking the law.” awesome.

    oh, did you finish those pants? I would really like that baby to wear those pants. although not enough to actually finish them myself, apparently. then you should take a picture of him so I can put it on my blog.

  3. Colleen says:

    The one year mark was really hard for me with finding my “identity” as a mom and as a “special needs mom” and everything else. But I was determined that while we did hang out with other SB kids, we also hung out with typical kids, because I wanted that for me and Nate and the other kids. I joined a playgroup, and soon the other moms got over the fear of SB (the kids couldn’t care less!), and I put Nate in a soccer program (all typical kids) when he was 2. He was the only one in a walker, but the other kids thought it was super cool and wanted to take it for a spin! I would just pretend that it wasn’t an uncomfortable situation for the other parents, and pretty soon, it wasn’t an uncomfortable situation. Fake it till you make it, lol.

  4. Mandi says:

    Donovan will always be normal to me because I think it’s normal for everyone to be different. I wish I was closer, but I’ll always be your friend.

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