One of “Those” Moms…

“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.
Fear.
Panic.
Sadness.
Hysteria.
Shock.
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 that 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 okay,” 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, and 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 the stories of mothers and fathers who have lost children and live with difficulties I cannot even imagine every day, I wonder what I’m doing there.

I’ve never truly felt like a “special needs mom”. I’ve never dealt with the day-to-day life of a child who needs constant supervision or special diets. I cannot imagine the strength of those mothers, because 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 special needs mothers, nor can I fathom the depth of their strength and courage. But, at the same time, I do have a child with different needs. Any two-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 four 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.

Because, you know what? It doesn’t matter if I don’t “fit in” with other special needs moms. 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, even if I don’t feel like I’m supposed to.

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

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10 thoughts on “One of “Those” Moms…

  1. I loved this! I feel the same way with my lucky fun boy! I don’t feel like I earn the title of “special needs mom”… Those women are superstars and are my aspirations daily. But I also don’t feel like a “normal mom.” It’s a blessing to hear someone else feels this way! Blessings to you and your precious girl!

    Liked by 1 person

  2. Thank You for Your beautiful story. My name is Natalia, I zm from Estonia. I can totally relate to every single thing you have said. Our first son was born less than 7 month ago with symbrachydactyly. We learned about it just at birth, no scans revealed it before. It would not change anything, as our precious baby boy is absolutely perfect, but we had pretty difficult first couple of months with him, accepting the fact that he is different, which not necessarily a bad thing:) He is sp special! ❤

    Liked by 1 person

    • It is absolutely a process, Natalia. The first two months or so, something new that would be difficult for her would occur to me every day. I didn’t photograph her with her lucky fin visible for at leas the first month, except privately.
      It’s a process, accepting it. But you’re right, I wouldn’t change her for the world. ❤️
      Thank you so much for sharing your story with me!

      Like

  3. My daughter has amniotic band syndrome also. Her left arm was affected. She has an elbow joint and a small amount past that but no forearm or hand. Andi just recently turned 9. I found out at out 20 week ultra sound but I’m not sure that was better. The dr didn’t know what caused it and I spent my pregnancy worried about my little girl. She’s perfect though! Andi plays first base on her softball team and shoots competitive archery. Never underestimate what your special child can do!

    Liked by 1 person

    • Thank you Angie! I have sometimes wondered if it would have been better for me to find out before I had her, but then I think I would have reacted much the same as you.
      I have been thinking about archery for her when she’s older(she’s about to turn three). Was it difficult to find someone to teach her? I’ve been looking into it, because my daughter’s arm sounds almost identical to your daughter’s: an elbow joint with a small extension past it, except on the right instead of the left.
      Thank you for your encouragement. It means so much!

      Like

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