Babysitting nephews and nieces helped distract my twin from MG

I don’t have kids. It’s a decision I don’t regret.

However, I come from a large family consisting of nine children, 10 grandchildren, and two great-grandchildren. It was a large household, and with a few exceptions, most of my siblings live relatively close to each other. I was surrounded by small nieces and nephews when I was younger. They’re all adults now, but I often reminisce about when they were babies.

My twin, Aaron, who has myasthenia gravis (MG), doesn’t have kids, either. I wanted to chat with him about it because it was considered odd for us, as Generation Xers, not to have any children.

I remembered that he often babysat and picked up his young nieces and nephews from school, activities that I learned gave him pleasant memories and distractions from MG.

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Aaron was diagnosed with MG at age 24. He used to be a manual laborer but became unable to work because of muscle weakness and MG flare-ups.

As a result, Aaron became more of a homebody. While he was always an avid gamer, he grew more obsessed after his diagnosis. As I get older, it’s clearer to me that he was looking for distractions.

Back then, I worked as an academic counselor and was often at school. I also got married shortly after Aaron was diagnosed with MG, so I wasn’t around as much.

Because our siblings with kids worked and had other responsibilities, Aaron often volunteered to help out with his nieces and nephews, especially since he lived near their schools. How did he feel about all that babysitting?

Old memories bring new realizations

During a recent conversation, I started by asking him if he regretted not having kids. Aaron said he didn’t. I believed him, but I sensed he was a little uncomfortable with the subject, so I didn’t want to push too much. I reminisced with him about our first experience babysitting our oldest niece.

We were kids then, and our sister-in-law at the time left our tiny niece with us while she ran an errand. We managed to put her diaper on backward. After laughing about the memory, I gently asked Aaron if he regretted not having such memories with children of his own.

He said he didn’t because he watched his nieces and nephews grow up. It’s not that I forgot that Aaron had that experience, but perhaps I took it for granted, as many in big families do. I didn’t have much patience for babysitting at the time, but Aaron was always helping out, even with MG.

“Do you miss those times?” I asked.

“Sometimes,” Aaron replied. “I love my nieces and nephews, but sometimes it was hard because I could not rest as much as I wanted.”

So much has been left unsaid about Aaron’s MG that I never thought of it like that. I thought he always enjoyed being the jolly babysitter, even with his condition. Maybe that was convenient for me.

“Still, I enjoy those memories,” Aaron continued. Even though our nieces and nephews are adults now, Aaron said that he still remembers their wide-eyed, happy, and innocent faces when he picked them up from school and walked them the short distance to our mother’s house.

While Aaron complained about the energy exertion, I focused on his pride in picking up his young relatives. I took it for granted that he enjoyed doing it.

I asked Aaron if there was anything about those times he didn’t miss. Yes, he said; because his MG caused severe eye misalignment, people would stare at his face and eyes, wondering what was wrong with him. He didn’t miss that. He eventually started wearing sunglasses everywhere to hide his eyes, and did so for more than 20 years. I wondered if picking up the kids from school led to this habit, but Aaron said it didn’t. He just didn’t like the stares.

I enjoyed our chat, but it made me realize how much Aaron has had to cope with — usually on his own.

Children have boundless energy, and their innocence and curiosity can be inspiring. My twin appreciates how watching his younger relatives grow up sometimes helped him shift his focus from how MG had changed his life.

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.