Q1: Life With Charley – The ChromoZone

#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?

Posted in Life With Charley Tagged with:
2 comments on “Q1: Life With Charley – The ChromoZone
  1. Mardra says:

    When I was pregnant with Marcus, I made jokes about a “life sentence” and “possible parole after 18 years, but no guarantees” – SO, I think I’ve always been in for the “long haul.”
    Also – last year at the 321eConference I had the chance to moderate the adoption seminar. (with the National Down Syndrome Adoption Network) I asked them about the term “Forever Family” as I had seen it on sites discussing adoption and special needs. I assumed it was because of the special needs – turns out it’s for everyone. ‘Cause everyone who has a child is a parent forever. Who knew?
    These are my thoughts – even if they aren’t maybe an answer.
    First time responder…is this thing on?

  2. Deb Bergeson-Graham says:

    I would imagine all parents feel they are eternal parents — not being one, I can’t truly understand what that even means — but I do feel attachment to kids I have worked with over the years. However, being an eternal parent to a child/adult with Down Syndrome is full-time and forever. Any parent has my admiration (providing they’re good parents) — but I believe someone with a child with differing abilities has even more admiration from me because of the job they have to do forever.

    Whenever an author shares a story the risk is there of criticism — whether the story is written or simply told — but without taking that leap of faith others miss out on amazing stories, courageous stories, stories that melt our hearts or cause us to change an opinion. Risks: the loss of friends, people thinking you’re better than others — or worse than others, that your story isn’t all that mind-blowing or great — as far as I’m concerned, Sherry hits it out of the park with this book! It’s amazingly beautiful! I sing it’s praises!

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