A Mother’s Day letter from special needs mom

A letter to the editor published May 10, 2019

By Jo Amato-Tuck

Special to the Reporter

Thankfully, life doesn’t always go according to plan.

Most other mothers I meet agree that motherhood is quite different than they expected. I know that in my years before becoming a mom I never could have fathomed how an average day would look for my husband and me with our three children. It is every bit as rewarding and exhausting as people said it would be, but with a few twists.

While every family is unique, our family is particularly special. Two of our three children have disabilities — one visible, one invisible. There is no denying that I have been prepared to mother my children since I was a child myself. This Mother’s Day, I’m celebrating how fate prepared me for motherhood in ways that I never could have imagined.

Growing up, my mom worked as a nurse in Wisconsin. The patients she often attended to were very sick children. Most were non-verbal and physically immobilised. But my mom just saw them as kids and so we did, too. She encouraged us to build friendships and play together. There is a pure magic in that all children will always find a way to play. One particular kid my sister and I played with was a boy named Paul who had hydrocephalus (physically his head was retaining water and was about five times the size of a typical child his age). He was around my age, maybe 9 or 10 at the time, and though he was non-verbal, I’d make him laugh by pulling different faces or popping up playing peek-a-boo at his bedside. I still remember how big his smile was. Sure, Paul and I played in a way that was different from how I’d play with some other friends, but when you’re a kid, you don’t care. Fun is fun.

My mom grew up with a neighbor named Sarah and they stayed friends. Even now my mom maintains that Sarah was the best hostess she’s ever met.

Sarah had Down syndrome. As my mom and her siblings grew up, they stayed in touch with Sarah. As a child, I was introduced to Sarah, and this was my first introduction to the Down syndrome community, even though I didn’t realize it at the time. She broadened our social circle in a beautiful way. I was aware that kids came in all different kinds, but I wasn’t raised to see different. My mom raised us to honor diversity and acceptance.

Fast forward years later to my pregnancy with my first child. We found out that she, like Paul, had hydrocephalus. A difficult reality knowing how devastating a diagnosis that could be – Sofie only had a 5 percent chance of leading a high quality of life. Then 15 months later, when the twins were born, we found our other daughter had Down syndrome. I didn’t see diagnoses, I only saw my children. Of course I knew our family would have some unique considerations, but I always trusted that we were ready for it. I had a deep sense of grace that I was meant to mother these children, because the universe had been preparing me to meet them my entire life.

I tell my kids every night as I tuck them in that they are special. We live this truth proudly. In our family, special isn’t really that, it’s the norm. I couldn’t imagine my family in any other way, and I’m grateful every day that my mother gave me the strength to be the caregiver to these amazing children. It was as if she knew exactly who my children were, decades before I did.

To my mom, thank you. To all the mothers, happy Mother’s Day. Enjoy your children and treasure every single thing that makes them specially them.

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A Mother’s Day letter from special needs mom

A letter to the editor published May 10, 2019

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