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What I Needed Most as a Child With Noonan Syndrome

As humans,¬†we have an innate desire to connect and build relationships. We relate¬†ourselves to others and express ourselves so that people will have the ability¬†to connect with us. So what happens when you can’t connect with anyone with one¬†of the larger parts of your identity?

My mother¬†was very open to me about my health when I was diagnosed with Noonan syndrome¬†(NS)¬†at the age of 5. Because of this, I was comfortable with the thought of having¬†NS. It was all I had ever known. The discovery of me having NS was as traumatic¬†as learning when my birthday was. Now, here’s the problem ‚ÄĒ I had nine friends¬†who also had birthdays in June. But I didn’t have a single friend who also had¬†at least five different medical specialists, or had to give themselves shots¬†every day, had holes in their heart, or had a mutated chromosome. To tell you¬†the truth, I didn’t think there was anyone else who had those things. I thought¬†it was just me.

When I was 11¬†years old, my cardiologist suggested that I attend a camp for children¬†and teenagers with congenital heart defects. Even though this was only a¬†symptom of Noonan syndrome, it was a major part of it. Initially, I had no¬†desire to go. By this time, I knew that there were other kids with unique¬†hearts like mine. But 11-year-old me had concluded that they were all in¬†wheelchairs living in the hospital. I wasn’t in a wheelchair, I wasn’t in the¬†hospital. I liked to run and dance. So a camp full of hospitalized kids in¬†wheelchairs didn’t sound like fun. But my cardiologist insisted that¬†every one of his patients who had gone said it was their favorite week of¬†the year. My mother signed me up, promising that I didn’t have to go if I still¬†hated it after we went to the informational meeting.

At that meeting I discovered not only kids my age without wheelchairs, but also that not a single one of them lived in a hospital. I met kids who had been going to camp year after year, my cardiologist was right. I was convinced. I started packing that night for the camp that was a month away.

Over the¬†next four years, I made some of my dearest friends to this day. I did not¬†discover a group of sick kids who talked about their health issues at camp for¬†a week. I discovered a community of kids who liked to dance, run, laugh and¬†sing ‚ÄĒ with hearts just like mine.

We weren’t a bunch of sick kids at camp, we¬†were kids who needed a friend just like us.

That group¬†of kids (who are now all adults) taught me one of the greatest¬†lessons in life. They taught me to laugh at myself. I learned that a medical¬†condition doesn’t always have to be taken seriously. It can be joked about, a¬†lot. We could laugh about weird things we’ve all dealt with, like sticker¬†hickies from an EKG and the horrors of halter monitors.

As we got¬†older, we stayed a community. We could pick each other back up when one wasn’t¬†doing well. We provided company and laughter during hospital stays, we gave pep¬†talks when one of us was bitter towards their illness, we continued to joke and¬†laugh about the thing that brought us together.

So if your child has any sort of medical uniqueness, please do everything within your power¬†to connect them with kids who are like them. As a parent, you must face the¬†reality that you cannot teach your kid everything they need to know about their¬†illness. Because frankly, you might never fully understand what it’s like to¬†have that illness. So show them someone who does. Never underestimate a child’s¬†ability to teach another child. Whether it’s through camps, playgroups,¬†conventions, or even just a meet up, it’s worth giving it a shot. Give your¬†child the opportunity to be understood.

two young boys laughing together

The Mighty is asking the following: Tell us about a time someone in your community went above and beyond (or did the exact opposite) for you or your loved one with special needs. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.