Being a parent can be exhausting. Whether the child is a newborn, a toddler or even a little older, there are a few days when we hear the alarm go off or wake up with our kids crying and mumbling, “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 were definitely much more hectic than I could have ever imagined. Shortly after birth, Cayden was diagnosed with infantile onset Pump disease through newborn screening.
Despite this devastating diagnosis, I did not intend to let it stand in the way of anything. I was ready to raise my son as a teenage parent, at the age of 16. I knew that parenting a child with chronic illnesses would take a toll on me, but I have to admit that the exhaustion of it all touches me the most.
Cayden had just recently started sleeping through the night. That means I went without a full night’s sleep for four years, except when my grandparents or mother would keep him overnight. Cayden struggled with sleep due to the breathing problems caused by Pompe disease, and he sleeps every night with a BiPAP machine, which I can not imagine being comfortable with in any way.
He would wake up several times a night, throw, turn and yell because he just could not get comfortable. Despite my lack of sleep, I still had to get up every day to take care of him. He slept here and there, but I often used the time to complete tasks that needed to be done around the house instead of taking the opportunity to nap with him.
Apart from the lack of sleep, there is also the typical day-to-day exhaustion. Most days, Cayden has some form of home-based therapy, such as physical therapy, occupational therapy, or speech therapy. If he does not receive therapy, he will receive his life-saving enzyme replacement infusion, which is currently the only treatment option for his Pompe disease. He also has appointments with a multitude of specialists every few months.
While I hate to complain because I know these things are all necessary for Cayden, I would be lying if I said it was not tiring. Some weeks I wish we could just take a breather, but that’s not possible. I’m a single parent, which also makes things a little harder. If it was a typical two-parent home, I would be able to get help, which would make things a little easier.
Recently I feel even more tired than usual. I am currently 14 weeks pregnant with my second child. While I rejoice in the good news, it physically takes a toll on me. Pregnancy makes me tired, and this time I also had to deal with symptoms I did not have with Cayden, such as extreme nausea and vomiting, which made me feel even more drained.
Fortunately, my family was a great help during this time. My grandparents took care of Cayden every other weekend, and my younger sister comes over to help when needed. I really appreciate it because it’s hard to look after Cayden and all his needs when all I want to do is close my eyes and rest!
I hope my energy returns quickly, but I know that, no matter what, I will always experience some exhaustion. When a child with a chronic illness grows older, it seems that exhaustion is only part of the lifestyle we are learning to live with. But I will never let that stand in the way of my love for my child. Whatever he needs, I’ll make sure it’s done, even if I’m tired.
Please note: Pump 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 doctor or other qualified healthcare provider with any questions you may have about a medical condition. Never disregard or delay professional medical advice to seek it because of something you have read on this site. The views expressed in this section are not those of Pump Disease News or its parent company, BioNews, and is intended to spark discussion on Pompe disease issues.
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