31 Days of SMA: Celebrating Our Differences Should Be the Norm

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by BNS Staff |

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Photo courtesy of Melissa Milinovich

Day 30 of 31

This is Claudia Milinovich’s story:

My mom is a normal mom. She taught me to walk and talk — stuff any normal parent would do. Yeah, she can’t walk because she has SMA, but that hasn’t stopped her from being an amazing parent.

When I’m out with her, we do get stared at, all the time. I’d simply like to believe that it’s because people have never seen anyone like my mom, whether it’s the fact she’s in a wheelchair or the fact that she is a mom. I mean, we do have to do things differently than other families, but no family is alike. She needs a special car and our house is set up differently — that’s our normal.

Most people never see past the wheelchair and forget she’s a mom. To me, she’s my mom and that’s all I see. I love her humor, her heart, her way of viewing life.

There are so many things that make her an amazing mom. I constantly get asked by my friends, “How do you do that?” or “Can she do that, since… you know.” The people I’m closest with learn to see past her chair and they treat her just like any other person. They don’t stare, they talk to her, and they act normal.

When I tell new people, “Oh yeah, my mom is in a wheelchair,” they usually ask questions like “Oh, what happened?” or “What does she have?” I love answering them. After that, they treat her as a normal parent.

But I hate the word “normal,” because it puts a certain type of pressure on people to act one way or look another way. We all are different and no two people are the same. This month, we celebrate differences, especially in those with spinal muscular atrophy. Happy SMA Awareness Month, everyone!

SMA News Today’s 31 Days of SMA campaign will publish one story per day for SMA Awareness Month in August. Follow us on Facebook and Instagram for more stories like this, using the hashtag #31DaysofSMA, or read the full series.