Parenting with myasthenia gravis has been difficult yet rewarding

What my son learned from growing up with a chronically ill parent

Shawna Barnes avatar

by Shawna Barnes |

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Shedding tears in frustration. Missing football games. Giving foot rubs and having heart-to-heart conversations. Being teased because I was in a wheelchair.

Raising a boy to become a young man is hard enough without throwing myasthenia gravis into the mix. But I like to think we made the best of it.

A timeline to set the stage

I was set on beating the odds early on. I had my son, Caden, when I was 18, and I graduated from high school three months later. When he was 5, I enlisted in the U.S. Army.

At 7, Caden went to go live with his dad when I deployed to Iraq. I came home sick when he was 8. I medically retired from the Army in 2011 when he was 9. Caden still lived with his dad because I was unable to care for myself, let alone an active young boy.

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The things we learn while living with myasthenia gravis

Bringing Caden home

I moved in with my parents and met my husband, Justin, in the fall of 2011. Between numerous doctor appointments and major ups and downs in my health, Caden was unable to move in with us.

Finally, at age 11, Caden moved in with us when Justin and I wed in the summer of 2013. We still didn’t know what was wrong with me, only that my health was deteriorating. It wasn’t until 2017 that we finally realized it could be myasthenia gravis.

A mom and her son stand next to each other, with the son's arm around her shoulder, and smile for a photo. They're both wearing gray hoodies and glasses.

Columnist Shawna Barnes with her son, Caden, in May 2019. (Courtesy of Shawna Barnes)

Through the eyes of babes

Caden saw some of my worst days. Before he was even a teenager, he knew how to react when I had a seizure. He became well aware of the importance of remaining calm in the face of adversity and medical emergencies. He also knew well the feelings of disappointment, defeat, and maybe even embarrassment.

Kids can be unkind. Caden was teased because I used a wheelchair. Harassed because my health prevented him from attending certain events. Ridiculed for choosing to live with his disabled mother.

Becoming a man

Through it all, he chose to rise above. He stood up for the kids in class who were left out or teased because of their disabilities. He befriended the kids no one else would. Caden was the first to offer his chair to someone who appeared to need it more than he did.

There were ample opportunities for him to be angry at me — especially when he became a teenager. At 16, he suffered a severe concussion that rattled his noggin. It was during his occupational therapy that we recognized there was something else going on, and he was diagnosed as being on the autism spectrum. The concussion essentially “knocked loose” his masking skills.

Rather than be angry and allow me to wallow in mom guilt for missing so many of the now obvious signs, Caden reminded me of the empathy I taught him.

Happy birthday

My “baby” turns 21 this week. He has already lived a life full of experiences that I wouldn’t wish on anyone. He had to grow up much sooner than I would’ve liked by helping take care of me on my worst days.

However, as he likes to tell me, I have given him the best gifts that money can’t buy — the life lessons that he’ll always be able to carry with him.

Myasthenia gravis can take a lot away from us, especially when it comes to raising children. I had to miss many events, skip vacations, and spend a great deal of time in doctors’ offices and in bed. But it also gives us the power to educate future generations.

Those of us with chronic illnesses have this amazing ability to teach our youth about compassion, empathy, resilience, determination, and grit. Whether we know it or not, they are watching and listening to everything we say and do — and everything we don’t say or do.

This week seems more monumental than when Caden turned 18. I’m not sure why 21 is hitting me in the feels more than 18, but it is. What I do know is that I’m thankful for the gifts that we’ve been able to bestow upon each other.

Happy birthday, Caden. I’m so very proud of you.

Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to myasthenia gravis.


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