Pediatric Stroke Program

Addie's Story

by Lisa King Colciaghi, Addie's mom

To mothers of newly diagnosed stroke survivors,

Recently, I came across a poem that I wrote following my daughter, Addie's, stroke. Even though only three years had passed, I had forgotten somewhat the dark terror I felt at the time I wrote that poem. Time does heal the gaping hole in your heart. Addie as BabyThe bad news is your heart doesn’t ever recover fully. Sometimes this is a bad thing and sometimes it’s a good thing; often at the same time. I’ll try to explain.

My daughter loves moon bounces and she always asks to go on them when we’re at a fair or carnival. The problem is that she’s unsteady from the weakness on the right side of her body. She can never stay on her feet once the other kids start bouncing. She has a hard time getting up. She gets terrified and I have to go in after her or find an older kid to take pity and drag her out. A few weekends ago, we were at an event with a moon bounce.

Being four years old, my daughter forgets how this will turn out and she wants to go on. I gently try to talk her out of it but she still wants to go on. I gather up my courage. We take off her braces and shoes. I help her up the little ramp since she has trouble crawling with one hand. She takes one bounce and falls down. I call her over to the mesh side and she scoots over on her bottom. She puts her fingers on the mesh and pulls up to stand. After bouncing once, she falls down again. This goes on several times. Finally, Addie as Toddlershe gets up yet again and bounces six or seven times.

Her face was pure joy. My heart was full of joy. She still got off before her turn was over but she did it on her own without me carrying her out. As we left, I saw other mothers chatting with each other, barely watching, as their kids bounced up and down. In that short time, my emotions went from sadness and apprehension to joy and pride.

You’ll feel things more deeply for your child whether good or bad. You’ll often feel separate from those “normal” moms and a little sorry for yourself. You’ll have to be more involved with your child with less time for other things. But, you’ll meet parents of special kids and other special people who will “get it.” Life will go on.

You’ll have moments of profound sadness. But, you’ll have moments of pure happiness. You’ll take less things for granted. You’ll celebrate little achievements and moments that other parents might miss. Most of all, your child’s determination and spirit will amaze you.

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