SB: So Beautiful, So Brave

braces

My daugher’s 7th birthday is coming up soon, and I find myself reflecting on how much she’s grown and how much progress she’s made in her first few challenging years.

Lilly was born with spina bifida. For those of you who don’t know what that is, it’s a birth defect of the spinal cord. In very basic terms, she had a hole in her back, and the spinal nerves were exposed, causing damage. The scope of the damage depends on where the defect occurs on the spine (like any kind of spinal injury). Luckily, Lilly’s defect was low on the spine, and she walks with the help of braces. When she was first learning how to walk (which wasn’t until she was one and a half), she used a walker to help her get along.

Lilly used her walker until she was three years old. Literally. On her third birthday, she decided to astound us all and walk on her own, tottering across the room between her big sister Shelbea and big brother Joe.

Before this happened, we thought maybe she’d need lofstrand crutches to transition to walking. Nope. She’s walked independently ever since. She even runs, in her own doddering way.

She’s taken a few tumbles along the way; when she was little, the distance between her and the ground was small enough that any fall wasn’t very dangerous. Now she’s tall, and her center of gravity keeps climbing further from the ground. I live in fear of her falling and cracking her head open, or knocking out teeth.

sb t shirt

Not long ago, I got that dreaded phone call from the school nurse: Lilly had tripped on some stairs and hit her head on the pavement, quite hard. She was okay, but the nurse instructed me to watch out for “concerning” signs, of concussion or worse-headache, nausea, change in behavior.

I hung up with visions of her getting off the bus bruised and bleeding, her eyes rolling in her head. But she was fine; though it hurt to the touch, there was no bump or scrape. No serious damage. This time. So while I’m grateful she’s not in a wheelchair, there are other things to worry about (and I do, constantly).

That’s the thing with SB-you think you’re in the clear, but then some new issue arises, a new hurdle to jump. When I was thinking about starting a blog, I toyed with the idea of blogging about being a parent to a child with SB. Simply to share my experiences with other SB parents, and to seek and offer advice and support. Two thoughts changed my mind:

  1. Two blogs? Are you insane? (I still wanted to do the writing blog).
  2. What if teen Lilly hates me for sharing so much of her life with the whole world, especially potty issues? (Bladder and bowel dysfunction are a big part of living with SB).

In the end, I decided to respect her privacy, but I still think about the SB blog now and then. Who knows? If this fiction writing thing doesn’t work out, I’d happily become a mommy blogger (with Lilly’s permission).

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Until then, this post is my ode to my daughter: Lilly, you are an amazing, beautiful gift to us. You inspire me everyday to persevere through every challenge and obstacle. I love you.

To learn more about spina bifida, check out the Spina Bifida Association website.

 

 

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