Watching my daughter with Dravet syndrome struggle to fit in is hard
There aren't many extracurricular activities or organizations she can participate in
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Earlier today, I sat on the empty bleachers at our elementary school, where my daughter was participating in a youth cheerleading camp. The rest of the parents had left, but I remained because Avery has Dravet syndrome, which means she is prone to having seizures, and I wanted to stay close.
Signing Avery up for the camp was a desperate attempt on my part to find a place for her to belong in her school community. Living in a small rural community has had its benefits, but this isn’t one of them. There just aren’t many extracurricular activities or school organizations she can participate in. There are some specialized sports teams and organizations in the region that would be better suited to her, but participating in them would mean driving more than an hour one way outside the town where we live. Less than ideal.
But as I watched Avery do her best to participate, I questioned my decision. Did Avery want this? Or did I? She was struggling.
One of the hard parts of the journey
Avery has some amazing friends, but none of her close friends are doing youth cheerleading this year because they all play other sports that wouldn’t be appropriate for Avery. My daughter seemed unsure about how to connect with the kids at cheer camp, who may not understand her differences.
The coaches have gone above and beyond to try to make this an inclusive organization, but Avery struggles to keep up with basic instructions and movements — her brain doesn’t process information quickly enough to keep up with the other girls — and she is aware of that. I could see her confidence crashing.
A couple of hours into the event, Avery asked me if we could leave.
Part of me is just grateful that she can even try to keep up with her peers. But my heart ached to watch her, knowing she desperately just wants a place to belong, and realizing that what seems so simple to others is extremely complicated for her.
I encouraged Avery to stay a little longer, eat lunch with the girls, and learn a cheer, but after that, we left. Avery would miss out on most of the instruction she’d need to participate in the upcoming performance, but what other choice did I have?
“I’m sorry, Mommy,” my sweet 10-year-old girl said as we got buckled into the car.
“Sorry for what?” I asked.
She explained she was sorry she needed to leave, sorry she couldn’t learn the motions, sorry that she struggled. My heart broke in two. I told her she didn’t need to be sorry.
This is one of the hardest parts of our journey with Dravet syndrome. Something that should be simple and fun is complicated and difficult. I think we will try cheerleading a couple more times and hope for the best. Maybe she will find a way to belong, and maybe she won’t.
Note: Dravet Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Dravet Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Dravet syndrome.
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