Dancing With Shards of Glass
A few weeks ago we went to The Kids Equipment Network to pick up an adaptive stroller/wheelchair for Axel.
I have been fighting to get Axel a wheelchair for months. I had prepared myself in my mind. I was so excited for getting out of the house to be simpler. We talked about it the entire drive. Once we got there, they wanted us to put Axel into the wheelchair so they could fit it appropriately. I set him in the perfectly supportive bright green chair and I strapped him in. He looked up at me with a big smile, the way he always does. I smiled back. But, then it hit me. Like a ton of bricks. I just strapped my child into a wheelchair, for the first time. And I lost it.
I had to go back and remember something my wise friend and fellow CMV mom, Erica Steadman, once told me.
“I likened my child’s CMV diagnosis and all the other diagnosis, as the world shattering around me. And my new job was to not pick up the pieces, because I couldn't. But rather, my job was to avoid stepping on them. Your life as a special needs parent is a lifetime of dancing around the shards of glass...the reminders of how your world fell apart that day. Over time, you get better at noticing where the shards are. You know to avoid them, to protect yourself from them. You know how to dance around them. And you get super strong and proud of yourself. Until one day a rogue shard is there to stab you and it came out of NOWHERE! This is one of those moments."
Putting Axel into his wheelchair is not the end of our story. We will never stop pushing to exceed every goal we set for Axel. I try my best to be positive every single day and that will never change. We celebrate every milestone, no matter how small it is in the eyes of everyone around us. CMV may have taken some of my son’s abilities but it will never take our joy.
Editor's Note: This post first appeared in Hands & Voices Communicator, Spring 2018, Volume XXI-Issue 3. Readers may follow Axel’s journey on Facebook by following his blog, Axel’s Journey with CMV. Be a part of the movement to #stopCMV. Andrea Stambaugh is a Board Member with Illinois Hands & Voices who is also involved immensely with the CMV community and raising awareness about the virus.
Category: "Parent Perspective"