Having a nurse at home over the summer has been a big help

This summer, for the first time, I made a big decision to reach out for help for my oldest son, Cayden, who is 7 and was born with infantile-onset Pompe disease. A nurse attends school with him every day during the school year, but in the past, I’ve declined to ask for help over the summer.

However, that has changed. I have two other children at home now, my 2-year-old son, Kyree, and my 10-month-old son, Kylan. Mornings with the three boys can be hectic, to say the least, and Cayden requires more care than a typical child his age.

Ever since the school year ended and summer began, Cayden’s nurse has been coming for four hours a day on weekdays. She starts by getting him up and onto the toilet. Then, he gets dressed or bathed on the days he needs a shower. After that, she gives him his first feed of the day through his gastrostomy tube, known as a G-tube.

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Aside from her duties with Cayden, she also helps around the house by doing his laundry, washing the dishes and supplies needed to feed him, and tidying up his bedroom.

All of these tasks have been a huge help. Not only does it give me time to get myself and the other children up and ready for the day, but it also saves me from experiencing caregiver burnout. Being the sole caregiver for your child can be physically and mentally taxing.

I felt guilty for so long when I thought about reaching out for help with Cayden. I was convinced it would make me seem like a bad mother. However, in the last six months, I’ve been prioritizing my mental health. I’ve learned to view asking for help as a good thing, not something to feel guilty about.

Having the extra help in the mornings has saved my sanity. Cayden’s nurse has been working with him since he started preschool at 4 years old. We have formed a great bond with her over the years, and she’s even started to feel like another member of the family.

I believe it’s important to find a nurse who fits in with the family, especially when bringing them into your home. It can be a little awkward at first to have someone in your personal and private life and space, but I’ve learned that the quicker I accepted help, the better and easier things would become for me.

After seeing how well things have been going with the nursing help this summer, I can wholeheartedly say that I plan to do it again in the years to come. And, in all honesty, I wish I’d done it sooner.

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