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When Labels Don't Fit Me as the Mom of a Child With a Limb Difference

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“Did you know she was missing her arm?”

Nearly three years later, and I still remember the exact phrase she said. I also remember every feeling I felt when I heard them.


And a gut-wrenching drop in my rapidly shrinking stomach that I have never been able to explain or name.

It was three years ago in May, when my second daughter was born, that I heard those eight words. I had not even seen my little girl yet, and my placenta was being delivered as she said them. It had been an easy delivery, much easier than with my first. I was induced, and labor was only six hours. It had been a perfect delivery, and then she said it.

My husband ran, or at least that’s what I remember. My mind was a complete blur of hormonal panic and fear, and all I knew was he was gone. I knew where he went: he went to see our baby. I wanted to see our baby too.

It would be a little while before I did. I don’t remember how long — like I said, I was awash in hormones and shock — but he came back soon, with my mother in tow, looking a little relieved.

“It’s OK,” they both told me. “She’s fine.”

That made me unclench, just a little. Being in the medical field, I knew he and my mother would know if there was something seriously wrong, or even slightly wrong. But I couldn’t stop worrying until I saw her. And she was perfect.

My daughter has amniotic band syndrome, a congenital birth defect where the fibrous bands of the amniotic sac detach and wrap around a part of the baby’s body, essentially cutting off the blood flow to that area. It can be as harmless as indents in the infant’s skin, or more serious, leading to appendages not growing at all or cutting off of blood supply to the newborn entirely. My daughter’s right arm is affected; she is missing her right forearm below the elbow and her right hand.

And she’s fine.

Today, I received an invitation to a birth defect registry support group on Facebook, and as I was reading some of the stories, I wondered what I’m doing there.

I’ve never truly felt like a “special needs mom.” I’ve never experienced the day-to-day life of a child who needs constant supervision or special diets. I feel like I don’t fit with them. I’m not really one of them, and yet I am at the same time.

But, if I’m honest, I’ve never felt like a “normal” mom. Because every time I get a double take from a stranger, or an innocent question from a kid, I realize over again the difficulties she will face in her life.

I will never compare myself to mothers of kids with more complex disabilities. But, at the same time, I do have a child with different needs. Any 2-year-old who has to be taught what to say to her friends about her “lucky fin” is different. But she really is, well, fine.

She climbed a rope ladder, on her own, at a year old. She hooked that little arm in those rope holes and got all the way up with no help. It astounds me every day the things she is able to do, things I would never have expected her to be able to do without some kind of help.

Crawling was difficult, but she did it, until the day she decided to stand up on her own and walk without any help. She had her first surgery at 4 months, and cried more from the hunger she felt when she woke up from anesthesia than from any pain.Her orthopedic doctor says she shouldn’t have to have any more surgeries unless problems arise as she grows.

So she’s really fine. And that’s fantastic.

And you know what? It doesn’t matter if I don’t “fit in” with other moms of kids with disabilities. It doesn’t matter if I’m not a “normal” mom (really, who is?) Labels do not have to define me, or any other mom.

I don’t have to be a labeled mom. I just have to be her mom.

So I’ll join the groups. I’ll find other moms like me, who have children like my daughter. I’ll talk with them, get to know them, and learn from them. I’ll enjoy the camaraderie of their friendship.

Because I’m a mom. And that’s what moms do: they take care of their kids.

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Originally published: May 22, 2017
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