It’s Not Your Fault

I wrote this for the AMC newsletter a while back. My audience was new moms whose children had just been diagnosed with AMC. The piece is titled, “It’s Not Your Fault.”

 

We tried seven ultrasounds to find out our baby’s gender. Each time we saw a black and white blur curled up into a pretzel. We were never told that our baby had any special needs. We weren’t prepared.

Babies with AMC are born stiff and curled up at birth. Ours was no exception. I just wanted to know if I had a son or daughter–something seven ultrasounds couldn’t tell me. After they pulled my baby from me via C-section I asked again what my baby’s gender was. “I don’t know,” a female voice said and then added in horror, “I can’t pull the legs apart!” The mirror they were holding up for me to see below the curtain got quickly snatched away. I started to get scared. “Why are the legs in the way?” I asked. A blonde woman leaned in close and rubbed my arm. “It’s not your fault.”

It’s not your fault. That was it. That’s not an answer. That’s a puzzle. What’s not my fault? What’s not my fault!

I didn’t see my only child again for five hours.

The first meeting with my daughter was shocking. Not because of her limbs (they had her swaddled), but because she was a tiny human life. The awe of it was overwhelming. She started to cry so I spoke her name. Laelia. She stopped and looked straight up at me. She recognized my voice! The intimacy of it actually frightened me. I immediately felt the weight of being completely responsible for a little someone. And not just any someone, but someone with special needs I didn’t understand.

Blame it on the heavy medication after my C-section, but I could not pronounce the word arthrogryposis correctly for the first three weeks of my daughter’s life. Heck, I had a hard time saying AMC. ACM? The days ahead were filled with physical therapy, fighting with insurance, painful stretching, serial casting and worrying. Not to mention breastfeeding. I found I was afraid of my daughter—afraid to hurt her. I didn’t understand her body and I grieved for the daughter I had hoped to have. This wasn’t supposed to happen. I stayed in this state for the first four months of her life as every trip to the doctor brought more bad news. She was missing the muscles to walk or lift her arms. She would be in a wheelchair for life. She would never walk. Upon hearing this, my cousin told me to start a blog and journal out my feelings. So I did. With a heart full of lead I started my very first post, “I have a physically disabled daughter…”

It has been four years since I have described my daughter in terms of “physically disabled.” It’s funny, but that just isn’t a good definition for this goofy, quick-witted kidlet. These days my blogs are full of life. I write about how Laelia lifts her arms by swinging them, how she walks all over the house in her KAFOs and how she’s the smartest kid in her preschool. That’s not the picture the doctors gave me, but luckily for me I had my AMC family—a group of people who knew this condition and didn’t let me give up.

So would I have chosen to have a child with AMC had I known? Yes. I’d choose this. My daughter is pure joy. Would I do it again? Haha! Absolutely. In fact, we are!

This summer we will be traveling to meet our son. He will be just under two years old. He has arthrogryposis. Arthrogryposis. I say it like a veteran now. Overseas my son has been given no hope of living a normal life. But I know different. I see his little legs and feet in that pretzel position and smile. Someday I’ll blog about what a joy he is. Someday when he’s crying I’ll speak his name. Roland.

And someday during an examination a medical professional will try to get his legs apart and I’ll tell her, “It’s not your fault.”

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