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Sunday, May 26, 2013

If You're Happy and You Know It


In typical Target fashion, they have a charming commercial out called "Clap Your Hands". Is is full of little babies doing all their adorable little baby things. And even though I have a beautiful, healthy, vibrant daughter that the commercial speaks of, without hesitation, my mind sinks into the loss of that experience with Kenan. It aired again last night and I made a conscious choice to think about Tamsen instead. But conscious choice doesn't transform emotions. I am sad. I am profoundly sad. As I listen to, read about and study the woman who have walked this path before me, I understand that this sadness will be with me for the rest of my life. I will be sad for the rest of my life. 



Wednesday, May 8, 2013

Say, "Hi Kenan!"


One thing I cannot imitate for Kenan, the voices of children, the overlapping sounds of laughing, screaming, playing, and crying as they bounce off the surrounding playground, trees and buildings. A noise Kenan has enjoyed since he was an undiagnosed baby. Here we are at our local, around the corner, nothing fancy, rundown park. What's nice is that it is adjacent to a preschool. I try to time our visits with their recess. When children approach us with timid curiosity, I encourage them to ask questions, interact and most importantly say, "Hi Kenan!". We all want a friend. I can easily imagine his loneliness. As Kenan grows so do his social needs. 

I'd like to take this opportunity to thank Chris Thomas of DesPlaines, IL (the older brother of my best friend from 213th St. in Euclid, OH). Earlier in the Spring his FCCDP Sunday School Class made several videos of the themselves singing, dancing, being silly and talking to Kenan and Tamsen. We play them periodically to fill in the gaps between Tamsen's playdates filling the room with the sound of children being children. 




Friday, May 3, 2013

A "Hurray" Worth Championing

April 12th

Today in physical therapy, with his AFO's and knee immobilizers on, Kenan stood freeform for five whole minutes. I don't know how evident it is, but he is doing most of the work balancing and bearing weight through his back, hips, legs and feet. Mary Kate, his therapist,  is there for head and arm support only. A year ago he could not sustain more than thirty-seconds at a time. An achievement that is testimony to the benefits of his stander regime and the strength his body and mental tolerance have gained from it. 

My beautiful, beautiful boy, to see you standing like that is to simultaneously "see" you running around the house.