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

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

Find this story helpful? Share it with someone you care about.

Related to Hypotonia

This Is What My Son Taught Me… Without Saying a Single Word

My son, Brandon, has taught me so much in just three years. He’s taught me what is means to love unconditionally. He’s given me a glimpse into the love our Heavenly Father feels for us. He’s shown me what it means to love someone so much it hurts, what it feels like when your heart [...]

How I Navigate the Stormy Waters of My Daughter’s Diagnosis

Though my feet are firmly planted on desert soil, my soul is lost at sea. Sometimes the ocean of my daughter’s diagnosis is calm. I find myself floating just at the surface, with every newly acquired word or skill she’s mastered like a ray of sunshine on my face. Her accomplishments, big and small, feel [...]

Everyone on the Bus Thought My Son With Autism Was Being Rude. Then, He Did This.

My youngest son sat in a seat on the crowded Greyhound bus. We were traveling as a group of three, two of us found seats together while he sat alone with a stranger. I kept asking if he wanted to sit with his brother. He stared at me, not speaking. As we traveled, I asked if [...]

This Is How I Find Joy in Autism

Sometimes life has a way of giving you a situation you don’t think you’re prepared for. Sometimes when things don’t go as planned, we have the why me? mentality, and it can be hard to move past it. I’m in the process of moving past all those sometimes moments. I still don’t know if I’m prepared for [...]