Why I’ve Been Feeling Oddly Calm Lately

Downtime is a rare commodity for parents of children with chronic illness

Keara Engle avatar

by Keara Engle |

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Living with or caring for someone with a rare disease means that life is often hectic. Between the endless appointments with specialists, infusions and other therapies, getting sick, and other responsibilities, it can feel like there’s barely any downtime. Eventually, one grows accustomed to the lifestyle, which makes things feel off when there are a few weeks of calm.

My 4-year-old son, Cayden, has infantile-onset Pompe disease. In 2021, life was probably the craziest it’s ever been for me. Cayden was sick and hospitalized for months on end. It was terrifying.

In 2022, things calmed down a bit as far as illness goes, but he started a new enzyme replacement therapy called Nexviazyme (avalglucosidase alfa). We had to make a long, 2.5-hour drive for the first few infusions, but then he was able to switch back to home infusions. That made our summer hectic, but it was worth it.

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After summer was over, Cayden got back into the swing of home-based therapies, underwent a sleep study, got a new set of tubes in his ears, and had checkups with his specialists. These are all pretty routine events for us.

Aside from the holidays and a short hospitalization, the past few weeks have been calm. We had a break from his home-based therapies, and we aren’t scheduled to see any of his specialists until February. Thankfully, most of his specialists have begun to space out his appointments since he’s been doing so well.

Peaceful bliss

While it’s been nice to experience some sort of tranquility, it’s also been a bit weird. I’m used to having something I must do for Cayden almost every day, so it doesn’t feel right when we have all of this free time. Don’t get me wrong, we certainly enjoyed it and took advantage of it!

We mostly just hung out. Cayden enjoyed putting up our Christmas tree and playing with all of the new toys he got for Christmas. We also visited my mom and my siblings.

I come from a family of seven, which might explain why I almost enjoy a hectic and crazy lifestyle. Growing up, there were always so many kids around. Living alone with just my kids was a big adjustment. It’s much quieter now with just one or two kids in the house compared with seven.

A young boy with a cute buffalo pajama shirt sits in a small red and green chair in front of a small decorated Christmas tree.

Cayden shows off the family Christmas tree. (Photo by Keara Engle)

I’m not complaining, though, because I’m grateful for the downtime. It was a nice little break before I brought home my new baby, who was born at the end of the year. That certainly made life crazy again, but I wouldn’t trade it for the world.

Now I’m looking forward to our next period of calmness, even if it makes life feel a little off!

Note: Pompe Disease 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 Pompe Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Pompe disease.


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