This picture was taken less than two months after Christopher (in photo – far left) had his MRI which revealed that he had suffered a stroke in utero. The neurologist called us after hours and I remember feeling half paralyzed myself just listening to the words come out of her mouth. My husband and I both cried for hours that night. We kept going over all the different scenarios of how, why, and what does this mean for our precious little boy’s future? We had so many questions and nobody had answers.
Searching for Answers
After learning of his stroke, we spent nearly a year alone in this journey that had only just begun. I spent many nights searching the internet just to find some support, someone to connect with who could truly relate to all the therapies, the unknowns, and all the emotions that were piling up. It wasn’t until I looked up the diagnosis code on Christopher’s AFO script that I realized his diagnosis was actually “hemiplegia.” Up until that point, I only knew it was a stroke and that he falls under the “umbrella” of cerebral palsy. So that’s how I finally found CHASA, their Facebook groups and the Listserve. I am so grateful to have found such a wonderful organization that does so much to help families of pediatric stroke survivors and hemiplegia. I have learned so much about pediatric stroke and hearing about other children’s struggles and triumphs, that it’s given me real direction in how I raise Christopher and plan his course of recovery. The sense of community amongst all the members in and of itself is truly invaluable.
I think it’s only natural when one receives so much to want to give back something, anything. For that reason, I feel honored to be involved in the making of the pediatric stroke awareness montages. Each year we have over 300 families participating in the montage project! Our children deserve all the credit, they are the ones that do all the work and climb mountains every day. I simply put their beautiful shining faces together in one place in hopes to give them a voice to the outside world.
The CHASA Board wants to thank Aileen Kavanagh-Kaiteris for creating this wonderful video that so beautifully honors our little stroke survivors. Thank you to the parents who chased around these sweet children to take just the right photo. And, thank you to the children for being part of this amazing Pediatric Stroke Awareness project.