#01 – The ChromoZone
In the first chapter Sherry talks about being an “eternal parent:”
“But for those of us who have special needs children, there is no graduation. Every age is the age of child rearing…
In my world there is still the sound of feet, only they don’t pit-a- pat. They clomp in man-sized running shoes (with Velcro flaps—we never mastered shoe laces), and they race toward me like a Great Dane on steroids as I’m getting out of the car. And just to make sure I get the full magnitude of the moment, they jump up and down while my Charley yells, “Huwwy up, Mommy.” As I fumble to unhook the seatbelt and fling the door open, I brace for impact, which includes that sticky kiss, and the arms around my neck, hugging me with hulk-size muscles and a familiar caution from Brad. “Careful, Son, don’t break Mom.” P.10
And why she decided to tell Charley’s story:
“It’s chancy, writing this. For the price of a book, you get a front row seat to our shortcomings. There will be those who will criticize. I won’t claim that it won’t sting. But it would hurt more if I kept Charley to myself. He is so worth sharing. I hope you will think so too. I seek to provide a personal glimpse into the genetic disposition that makes him, well, him, and the relationships we have with him and because of him. Why would I put our lives out there? One reason. I want us all to spend some time in Charley’s world. So often those of us who live our lives in what we consider “normal,” regulate how the “special” people in our lives live. We know what our world looks like. But do we know what his looks like? It is my hope and prayer that he will touch you.” P. 17
How does the phrase “eternal parent” make you feel?
Do you think the risk of being criticized is worth the benefit of sharing your story? What are some of the other risks involved with “going public” with your story?