spinal muscular atrophy caregiver

Ashley B.

Mom

The support of siblings

Now, in our house we have lots of big sister/little sister dynamics. With 4 girls, I can only imagine the battles over clothes, shoes, friends, and the inevitable boyfriends that will be in my future! But for the time being I will soak in every morsel of my girls being little.

02/2018

They see their SMA sister as just that, their sister. They, unlike most strangers, see her for the crazy, sassy, funny, and fiercely independent 3-year-old that she is. They don’t see her wheelchair, her inability to fully clap loud like them, the extra help she will continually (most likely) need cutting her food, getting dressed, bathing, or brushing her teeth. I am sure they don’t ask themselves ‘I wonder what’s wrong with her?’ when they see her. They know she wears a mask when she sleeps, gets fed via her “tubey,” uses a cough machine/gets taps when she has a cough—and yet they see her for exactly who she is—their sister. To be honest, when people tell me I have my hands full, I just want to say I couldn’t do it without each one of them.

To my twins, the big sisters: you are wise beyond your years. You are my machine turner on-ers, you are my syringe getting, palm cup finding, movers of anything on the floor that she may roll over sweet angels. Yes, you are my extra set of hands (so very thankful for twins—I have told you before that I am crazy). Yes, I expect a lot from you. I expect you to be at my side when times are wild, but I also expect you to simply be a 5-year-old. Your sister looks up to you, she wants to go to school like you, wear lip-gloss like you, play with you—now if only she’d want to potty-train like you. Hmmm, maybe someday. She is a stubborn one.

To my one-year-old, the little sister: you fit into our family like a glove. It’s like you knew to be the most easy-going, sleep-through-the-night-at-8-weeks, laugh-and-smile-at-everything sister who we love. Thank you for completing our family. You and your sister have an incredible bond. When you became mobile, your big sister never once ventured too close in her wheelchair—she has this sixth sense and knew where you are at all times. You, I believe whole-heartedly, helped her recover faster from her 2 hospital stays. You gave her countless laughs and smiles. Provided her company and the motivation to stay happy.

To all the sisters: We are a family, a completely normal family that loves each other beyond any measure. Your dad and I didn’t sign up to be special needs parents and you ladies didn’t sign up to be special needs siblings. It is a gift that was given to us. A gift that seemed scary as all get-out at first, but slowly and together we have managed. We have managed 2 family vacations, numerous trips to the grocery store, we have managed illnesses, we have managed growing our family farm, and your dad and I have managed a few date nights here and there. My girls, we have managed “normal.” It may not be everyone’s idea of normal—but they don’t matter!

Will the day come where they ask why Collins is in a wheelchair or can’t do the things that they can? Absolutely. But for these moments, these few naïve moments, I will let them live in the bubble of “that’s just how she is.”

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