September 14, 2022 | By: Leslie Curtis
Categories: Family Support
One of my favorite songs that relate to our journey caring for our son Jac has been, He’s My Son. The song brings me to my knees every time. The lyric, “See, there’s a boy that needs your help, I’ve done all that I can myself,” has been especially impactful recently.
As parents, we know our children inside and out. After 20 years of taking care of my son, I feel I should have a degree in nursing, pharmacy, respiratory therapy and, of course, being a certified physician. Over the years, we’ve gone to many doctor’s visits, therapy sessions, and surgeries and experienced some scary seizures and multiple hospitalizations.
I am in the healthcare field as a therapist. I am beginning to realize this was no accident. I think a higher power planned this a long time ago so that I would be equipped with the skills to know how to help him and take care of him as he grows older.
In the last couple of years, Jac has had three big surgeries. With each surgery, I have learned more about caring for Jac. There are long days when I feel like I have been too busy taking care of my patients and haven’t spent enough time with Jac. I can rest a little easier knowing that our cuddle time every night, watching Disney movies, is still quality time.
I am the one who knows him the best. I am the one who knows what he means when no one can understand him. I am the one who can list all 16 of his medications and dosages without a second thought. I am the one who will continue to work with school districts, insurance companies and doctor’s offices to make sure Jac gets the care he needs.
I am the one with whom he gets frustrated, but he still knows that I am his person. Many places on this website discuss the parent being an expert on their child, but here’s another article from a parent on the subject.
Working from home brings priorities into focus. I am a caregiver first and everything else second.
Categories: Family Support
Even if it has been a long time, it’s important for caregivers to start taking care of themselves. Catching up on my healthcare and doing things just for me has made me happier and healthier.
Categories: Family Support
Who was it that said “Nothing is constant except change?” I wish that person could tell those of us who don’t love change, even good change, how to manage it.
Categories: Family Support