Managing the Exhaustion That Comes With Parenting a Child With Chronic Illness

Keara Engle avatar

by Keara Engle |

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Being a parent can be exhausting. Whether the child is a newborn, a toddler, or even a bit older, there are some days when we hear the alarm go off or wake up to our kids crying and mumble, “Just five more minutes, please!”

I knew what I was getting myself into when I had my son, Cayden, a little over four years ago. However, things have certainly been way more hectic than I could have ever imagined. Shortly after birth, Cayden was diagnosed with infantile-onset Pompe disease via newborn screening.

Despite this devastating diagnosis, I wasn’t going to let it get in the way of anything. I was ready to raise my son as a teen parent, at the age of 16. I knew that parenting a child with chronic illness would take a toll on me, but I have to admit that the exhaustion from it all affects me the most.

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Cayden has just recently started sleeping through the night. This means that for four years, I went without a full night of sleep, except when my grandparents or mom would keep him overnight. Cayden struggled with sleep because of the breathing issues caused by Pompe disease, and he sleeps with a BiPAP machine every night, which I can’t imagine is comfortable by any means.

He would wake up multiple times a night, tossing, turning, and fussing because he just couldn’t seem to get comfortable. Despite my lack of sleep, I still had to get up every day to take care of him. He would nap here and there, but I often would use the time to finish tasks that needed to be done around the house instead of taking the opportunity to nap with him.

Aside from the lack of sleep, there is also the typical day-to-day exhaustion. Most days, Cayden has some type of home-based therapy, such as physical therapy, occupational therapy, or speech therapy. If he’s not having therapy, he’s receiving his lifesaving enzyme replacement infusion, which currently is the only treatment option for his Pompe disease. He also has appointments with a multitude of specialists every couple of months.

While I hate to complain, because I know these things are all necessary for Cayden, I’d be lying if I said it’s not tiring. Some weeks, I wish we could just take a break, but that’s not possible. I’m a single parent, which makes things a bit more difficult as well. If this were a typical two-parent home, I’d be able to get some help, which would make things a little easier.

Recently, I’ve been feeling even more tired than usual. I am currently 14 weeks pregnant with my second child. While I’m overjoyed about the happy news, it’s taking a toll on me physically. Pregnancy makes me tired, and this time around, I’ve also been dealing with symptoms I didn’t have with Cayden, such as extreme nausea and vomiting, which makes me feel even more drained.

Thankfully, my family has been a big help during this time. My grandparents have been taking care of Cayden every other weekend, and my younger sister comes over to help out when needed. I appreciate it a lot, because it’s hard to take care of Cayden and all his needs when all I want to do is close my eyes and rest!

I’m hoping my energy returns quickly, but I know that no matter what, I’ll always experience some level of exhaustion. When parenting a child with chronic illness, it seems that exhaustion is just part of the lifestyle we learn to live with. But I will never let it get in the way of my love for my child. Whatever he needs, I will make sure it gets done, even if I’m tired.

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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