What Not to Say

I recently read a blog post from a woman about what not to say to a parent of a child with disabilities.  I recalled thinking after I read the post – and I actually replied to it myself – that I didn’t feel the way she did. In fact, I like it when people ask [...]

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Let the Data Show

We’re entering another phase where instead of being a mom, I become a scientist. Instead of snuggling and hugging and cheering, we will observe and track and analyze. I don’t especially like these phases, but long ago I learned that we all do things we don’t like, right? Catherine has been having “episodes” every night, [...]

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A Little Weekend Reflection

Sarah knows the word “Dadgummit!” Catherine now knows the smell of burned food – three different kinds to be precise. She knows the smell of burnt candy, burnt toast and burnt toast with gruyere cheese blackened on top. This was our weekend. I went to the grocery store excited to buy the ingredients to try [...]

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Come on Mommy, Dance!

Two Mondays ago, we spent the day at AI duPont Children’s Hospital, confirming that Catherine needs surgery. Not just any surgery. A surgery where they will cut her bones on both her hips and one of her legs. A surgery that anticipates enough “discomfort” that Catherine will have to be out of school for a [...]

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The Observer

Am I “The Observer?” Catherine has what’s known as “stridor.” Basically, it’s a sound that comes from inflammation in her throat obstructing her airway just enough to produce a sound when she breathes. Sort of like an old man on oxygen – or at least what I hear in my mind when envision an old [...]

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