Monday, June 1

Celebrating Inchstones

I talk about Will an awful lot here. (By the way, that's his "cheese" know, the one the kids pull out when you pull out the camera?)

For those that don't know him.....his story goes something like this:
He was born healthy, or so we thought. Two weeks later, he had a diagnosis of 4q partial chromosome deletion. He went home with an NG tube through his nose because aspiration led us to the NICU here. Other than that, we had no idea what his life would be like.

In the past four years, we have had some major ups and downs, as any parent of a child with special needs. The ups have outnumbered the downs....quite possibly because this is how I choose to look at it, or possibly because we started life out with a diagnosis and went up from there. (We were told he might never learn to eat, walk, talk, and so on.)

His diagnoses now also include things like apraxia, dysphagia, esophgeal dysmotility, developmentally delayed, probable mitochondrial disorder, and sensory integration disorder.

His "other" list includes things like clearing his swallow study at 11 months, the time he learned to ride his tricycle at age 4, stopping tube feeds at age 4, and so on. You get the idea. The Celebration List.

Words and diagnoses don't define the person, and yet, our children are all too defined by these words. We choose to celebrate the "inchstones" in our family. (Milestones don't manufacture enough celebrations...we celebrate the things in between, or the things they don't write about in those books!) We choose to focus on what Will CAN do and the things he does everyday that no one thought he'd ever do.

Time for celebration!! What inchstone have you seen recently in your household?

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