Why I Write About a Word That Spell Check Doesn't Even Recognize


The other day, as I typed the word “hypotonia” onto a blank page in Microsoft Word, a red line appeared under it — a sign of an error — reminding me that to much of the world, including my computer, the word “hypotonia” has little to no relevance.

young girl sitting outside Before I had my daughter, Ceci, I knew nothing about hypotonia. No Hypotonia Awareness Month exists, and many children who are hypotonic will eventually be given a more specific and concrete diagnosis.

But for some of us, the word “hypotonia” is all we will ever have, and because of that, hypotonia is very real in my world.

It’s the reason I write.

I write to raise awareness, to teach others that even though my daughter has low muscle tone, it doesn’t mean she is weak.

I write to show others how strong children with hypotonia are. Their muscles may be tired as they battle against gravity, but they always end up the victor.

I write to give hope to other families who are hearing the word “hypotonia” from a doctor for the first time, to remind them that while their child may experience delays, it doesn’t mean there will always be struggles, nor does it mean there will never be amazing successes. There will be inchstones to celebrate and unimaginable joy and happiness.

I write with the goal to heal myself as I journey through the murky waters of this diagnosis. I scribble out my struggles and sadness, and somewhere along the way, I find hope and peace. I’m reminded that hypotonia is a constant lesson in perseverance, determination and faith.

I write to you, from a mother’s heart, knowing that my child is different from yours and fully aware that someday her differences may be noticeable to your own children.

I write because I know there will come a day when I’ll be unable to write anymore — a day when I won’t be around to explain Ceci’s disability to others.

And when that day comes, I write this to ask a favor or two of you: Please accept, encourage and support her. Please tell her how much potential she possesses — how much beauty and good she has to give to the rest of the world.  And above all else, please love her.

ribbon for hypotonia awareness

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