a woman with narcolepsy asking her daughter questions

How Can a Parent's Narcolepsy Affect Kids?

Wondering how kids are affected by having a parent with narcolepsy is a conversation I have had with many moms. So I set out on a quest to hear from kids. Some still kids, others now adults. They all had one thing in common. They spent some of their childhood years with a parent who had a chronic illness or disease of some sort.

Turning to my youngest, I curiously asked his thoughts. He is 7, and his whole life, I have had narcolepsy. He looked at me, kinda mystified, and shrugged with almost every question. After talking to many moms, it seems that most younger kids take it in stride. They don’t know any different. The only comment my 7-year-old had was to comment on how he had to eat oatmeal every day for a year. I was comforted by this. He seems largely unaffected by the whole thing.

When kids are aware of our symptoms

As kids age, they have a bit more to say. They become more aware of the symptoms. My now 13-year-old daughter said, “I don’t know what to do when you have cataplexy, so I just stand there awkwardly.”

Another mom commented, “My 10-year-old feels responsible when I have cataplexy and tries to catch me.”  She was working on teaching him how to respond.

Talking to our kids about cataplexy

Discussing how our kids can respond to our cataplexy attacks can be helpful for them. Assuring them that I am ok and they are not responsible for me, has helped my kids. I also have given them ideas on how to react during a cataplexy attack. I have asked my kids to just come close and put a hand on me so I know they are safe.

When my son, who is 11, was younger, I had a very dramatic cataplexy attack that caused a lot of attention and medical personnel got called. When I asked him about it, he had no recollection of the event. This surprised me, as I figured he would have been impacted.

Conversations with my kids

Inquiring to my younger kids, “What is bad about me having narcolepsy?” was interesting. They had little to say. The only negative was they were bummed I couldn’t go snowboarding anymore. My 13-year-old added, “I see you take naps but it doesn’t bother me. It just is.”

I made my way to my oldest. She is 15 and was 8 when I got narcolepsy. She is the only one who remembers me before. I didn’t want to ask too many questions, without first seeing what she would say on her own. I was curious, would she focus on the negative, or positive. Overall she had a pretty positive outlook.

I eventually asked her, “Do you feel like your childhood is ruined?"

She replied, “No, I feel like our eyes have been opened to something a lot of kids haven’t experienced. Not that I want other kids to go through this, but they just don’t understand. I feel like I can relate to people on a different level because of this. I can understand people who have other illnesses better. I feel like I have a life skill that is beneficial.”

Adult perspectives

Next, I was curious to hear from grown adults. Adults who grew up with a parent who had a chronic illness or disease. I asked one question, “What positives are there about having a parent with a chronic illness or ongoing health issue?" I had no idea where this question would lead. These are some responses.

Health issues can bring us closer

One friend said, “My mom used to never hug me or tell me she loved me. After her health deteriorated, she softened some. I think being near death at one point helped her take another look at our relationship. She started acting happier to see me and started hugging me. It took years for me to adjust to the change. It is now normal in our life.”

Understanding our own resilience

Another, now in college, said, “Having a chronic illness in the family instills a sense of resilience. One may ask, ‘Why me?’ ‘Why my mother.' You can ask questions like this all you want. But sometimes medicine doesn’t provide an answer. What I learned was to be grounded in the unknown. I learned to thrive within the hard questions. I learned to appreciate the questions that come about with struggle. A chronic sense of uneasiness at first, yes. But that sense of uneasiness turned into a chronic sense of confidence. That no matter what she was going to have to go through next, no matter what I would have to go through next, I would keep fighting to ask good questions. I would keep fighting to embrace a consistent struggle. It has led me to believe that pain is truly a gift. Even though it hurts, it reminds us of what was, and what is to come.”

Encouraged by responses

I had many more questions and discussions. Overall, I was encouraged because so much of what these “kids” said leaned toward the positive. I saw grit, resilience, compassion, and gratitude.

If you are a parent with narcolepsy or other health concerns, I hope this encourages you as it did me. Have you had a conversation or experience that you can share to further encourage us?

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