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Rethinking “Normal" by Valerie Colavecchio

I am the mom of a 17 year old boy named Parker. Parker was born with a rare genetic disorder called galactosemia. Parker is also visually impaired and has autism…that’s a mouthful, isn’t it? It gets easier saying all that, but it’s still a mouthful. It was a lot when he was born and it’s still a lot 17 years later, but I am here to tell you it gets easier. And better. And worse. And even better. Being a mom to a child with physical and developmental disabilities has changed me forever…changed for the better in so many ways.

Prior to having Parker I was your typical type-A, hardworking woman. I worked as a Corporate Recruiter for a Fortune 500 company. I had fancy clothes and shoes and good handbags, and got my hair cut and highlighted often. When I found out I was pregnant, I got the nursery ready and freshly painted. The adorable blankets, the cute clothes. I read allll the books, played classical music to him in utero. I was ready.

Fast forward to an emergency C section, and a tiny little boy arrived; born only 4 pounds 10 ounces. He was jaundiced; he was not thriving. No one could figure out why my little boy was suffering. Parker was my first (and only) child, I didn’t understand what was going on, I didn’t understand why I had to leave him in the NICU in exile while I went home. Days later, we found out Parker had galactosemia; a few days after that, a visual impairment. Then years later came the autism diagnosis.

I had planned to work part time after giving birth to Parker. With all his medical issues this was impossible. The good shoes went to the back of the closet, the highlights grew out. I started shopping in Target for clothes; I was far from fancy. I had to care for this little boy with so many special needs. Forget about understanding galactosemia, I could barely spell it!

My inner dialogue was in turmoil: “What do you mean I have a blind kid? Who has a blind kid these days? And then later, autism? What? MY kid? No no no, I was meant to have the perfect little boy who would snuggle in his stroller, sleep through the night and learn how to recite poetry by 3 years old.”

After many many good cries, pity parties and lots of “why me’s?,” I learned to spell galactosemia. In fact, I came to learn a lot about raising a visually impaired child and tons about autism. I realized that Target really does have some cute clothes. It was scary, it was hard, but it was okay. And continues to be okay. There are people I have met that I would have never met had I not had Parker. Friends that have become family. We laugh, we cry, we eat lots of snacks.

The most important thing you need to know is that it’s going to all work out. You have a baby! A snuggly little lump of love. Enjoy the miracle of that. That you get to raise this incredible human being! Is it what I had planned for my child and my life? Well, no. But is it fun and silly and interesting and wonderful? Yes! I am not one of those Hallmark Pollyanna moms, but it really is a beautiful life. Embrace the differences in your child. Understand that “normal” is just a setting on a dryer. That you were given this child because this child needs you…and you need them!

It’s okay to grieve the child you thought you were having. It’s okay to not like their diagnosis or special needs. You will have good days…GREAT days even. And some not-so-great days. Surround yourself around people who understand this, who get it. Find your tribe. Be gentle on yourself, be kind to yourself. It will be hard but it will be worth it. And remember that you can do this.

For more information on galactosemia, visit

Resource Summary
Rethinking “Normal"


The National Genetics Education and Family Support Center (Family Center) provides tools and resources to support family engagement and genetic services.

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