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How I Stopped Thinking of My Son as a 'Sick Kid'

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My beautiful son, Anthony, was not born with any noticeable disability. It wasn’t until he was 6 months old that we started to see any changes. Eventually, we would figure out Anthony was having endless seizures overnight, usually between 3:00 -5:00 a.m. The only clues we had were that we were finding him in pools of vomit in his crib. We would take him to the doctor and the assumption would be he had the flu. After a little while, it was evident we had a much bigger issue.

This went on for years, leaving my son significantly mentally impaired. Our days were filled with long hospital stays, doctors, and therapies.

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As a first-time parent, I barely knew what I was doing. All I knew is that I had to keep going to get my little one better. It was physically and mentally draining. I felt like a hamster on a wheel! Every day was spent managing not only my son’s physical health but also his mental health. All the anti-seizure meds had left Anthony with lots and lots of side effects. Then, after Anthony’s bedtime, I would spend hours each night researching possible diagnosis, any possible treatments, and any studies that may apply. I never even thought about whether I accepted my son for who he is. I was too busy just surviving.

When Anthony turned about 5 years old, I happened to see a documentary about Temple Grandin. In the documentary, Temple explained how important it was to have expectations for your child’s behavior. When your child grows up, society will have expectations that your child must fulfill in order for him to be accepted. Some things are under our control, and others are not. It hit me like a lightning bolt. My little guy would not always be 36 inches tall and 50 pounds. Then what?

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I realized that Anthony was perfect. He was just my son, and at that moment, I stopped treating him like a “sick kid.” In that moment of acceptance, I realized it’s not throwing in the towel; it was a gift.

Obviously, throughout the years I would have weaker moments when the acceptance would not be so easy, but they were just moments. My beautiful son Anthony is now 6 feet tall, 200 pounds, and 17 years old. He is about the happiest teenager you could find.

In the earlier years, I had equated acceptance with quitting the fight to make Anthony “better.” I now realize that acceptance was the greatest gift to my entire family and that Anthony was already “better”; it was the rest of us who needed to get on board!

The Mighty is asking the following: Can you describe the moment someone changed the way you think about a disability or disease? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.

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Originally published: April 6, 2015
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