When the Caregiver Needs Medical Care

Jamie Sumner
Special needs mom and author
04/03/24  12:13 PM PST
Jamie sumner holding her son with complex medical needs

I am not the best at going to the doctor. I’m great about it with my kids. If there is vomiting, a high fever, discharge of any color, then we are there with insurance card in hand and masks on. But when it comes to me, let’s just say I’m more…wait and see. There is always so much else that needs attending that I cannot imagine stopping to tend to myself. I admit that “grin and bear it” is not the best approach to your own needs, but that is how I’ve always been, even as a child. I vividly remember the smell and texture of the nubby carpet on the stairs behind my high school’s theater as I rested my head and whole body there during opening night because I could not possibly quit the show due to food poisoning from grocery store sushi.

It’s become even harder to give in to my personal needs as my son has gotten older. Charlie has cerebral palsy and he needs me to be in working order so I can lift him in and out of his wheelchair, cheer him on through bites of dinner, transfer him to his bed at night, and be there to greet him in the morning. We are planets revolving around each other, relying on each other’s gravitational force to stay in orbit.

However, being of Irish and Scottish decent, aka very freckly and very red-headed, one thing I do not skip is my yearly skin check. I hate it, but I do it because I don’t need 23andMe to tell me I am prone to skin cancer. Mostly, I skated by—little pre-cancers and anomalies here and there. This year though, I did not skate by. This year, after one particularly long appointment that ended in a biopsy and ten day wait, I was diagnosed with a whopping basal cell carcinoma right in the middle of my forehead.

No, it could not wait. Yes, I would have to see a specialized surgeon who would perform the Mohs procedure. Fine. I went on a day I could ask my husband to work from home so he could meet the kids when they got home from school. I expected to be in and out in an hour. It took four. Turns out that once they got in there, this little tumor wasn’t so little. I left with fifteen stitches and a black eye and strict orders not to lift anything over five pounds and also not to bend over, not even to tie my shoes! Guess who is heavier than five pounds and requires me to bend over? Charlie.

For seven full days until I got my stitches out (and really it was supposed to be longer), I was not allowed to be the caregiver in the manner I was accustomed. It was torture not to lift Charlie into his chair or give him a bath or even heave him up into a bear hug, which is our favorite thing. My husband got him ready for school and met him at the bus every day, while I stood next to him like a bandaged hospital escapee. Also, there were the headaches—severe migraines that happened at night when the pressure from the swelling took over. I was exhausted and not emotionally myself and kids pick up on that. I winced as I smiled, but I kept smiling as I tried to explain to Charlie that no, he could not touch the bandage and yes, Mommy would be okay.

And you know what? After seven days I was mostly okay. I got the stitches out and could lift my sweet boy again. The black eye lasted an eternity, but I didn’t care and my other two kids said it made me look tough. Long after the bruises faded and the scar began to heal, I realized that I don’t have to do everything and we will all survive.

There will be periods in life when you as a caregiver will not be able to provide the care you desperately want to give. But those are the times of the most growth in you and your loved ones. Those are the times when you discover you are allowed to step back and when others learn that they can step in. I had to realize that my goal is not to be indispensable, it is to create an environment where my son can thrive, with or without me at the forefront.


child with special needs
Jamie Sumner is a special needs mom and author.

Author of the middle-grade novels:















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