I’m Thankful I Can Depend on My Family for Help
Having support is a game changer when raising a child with Pompe disease
When you have a child with a rare disease, it can be difficult to find people who are both comfortable and willing to care for them. It’s been a challenge to find people I trust enough to watch my 4-year-old son, Cayden, who has infantile-onset Pompe disease.
Cayden needs help with almost everything. He’s immobile, so he depends on others to move him from one spot to another. He also has a feeding tube, needs diaper changes or help using the bathroom, and receives breathing treatments at least once a day. Most children his age don’t have these extra needs, so caring for Cayden can scare people a little.
Thankfully, I have some very special family members who have stepped up to the plate.
My grandparents are a huge help. They usually take Cayden every other weekend so that I can get a bit of a break. My little sister, who’s only 15, is also a tremendous help. Over the past few years, she has stepped out of her comfort zone and learned how to manage all of Cayden’s needs like a pro! I never expected her to be so eager to help at such a young age, but I’m extremely grateful that she is.
A recent scare
Recently, I was experiencing some complications of my pregnancy. My doctors urged me to go to the hospital after my blood pressure spiked dangerously high during a routine checkup. They wanted specialists to monitor me and check on Cayden’s little brother, who will be here by the end of the year. Luckily, everything turned out OK, but it was stressful being in the hospital for a few hours.
My little sister was already at my house watching Cayden, and when I informed her that I’d be home later than expected, she had no issues with watching him for longer. I really appreciate everything she does to help out and can never thank her enough.
When I have the baby, my grandparents will take Cayden for a few days. I’m hoping that my hospital stay won’t be too long, but you never know. I will have to be induced again due to my blood pressure, just as I was with Cayden. But at least it will be planned this time. That’s one less thing I have to worry about.
Having a child with a rare disease isn’t easy by any means, especially as a single mother. I personally do everything in my power to make sure that Cayden is taken care of. However, sometimes things happen and I physically can’t be the one to watch him. For example, when I had a very painful kidney stone, Cayden’s home infusion nurse helped out for the day so I could get some rest.
I’m so thankful for the few people in our lives who go out of their way and take it upon themselves to help. It’s not always easy to accept help since I’m used to doing everything on my own. However, it does feel nice, and it’s reassuring to know that my family can step in when needed. I know not everyone is so fortunate.
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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