Finding Youth Diapers for My Son with Cerebral Palsy
My son Charlie has officially outgrown conventional diapers. He’s twelve and slim. It took us a while to get past those size sevens. I’m grateful they lasted as long as they did. I am also grateful that I did not know what was coming next. Knowledge is power, but ignorance is also bliss.
The next size up in diapers requires a doctor’s order to a medical supply company and our insurance doesn’t cover them. They are approximately three times the cost of what we are currently paying. I tried the workaround, which is adult size small diapers, which were still much more expensive, but at least more palatable than the diapers that cost their weight in gold. One Amazon delivery later, Charlie looked like he was gently swaddled in a garbage bag—it was up to his elbows and down to his knees. We laughed and I let myself say goodbye to that possible solution.
I called the United Cerebral Palsy Foundation and they informed me that sometimes they get diapers donated, but the size and quantity are never guaranteed and they can’t hold them for you. It’s first come, first served like Filene’s Basement, but for diapers.
After several increasingly desperate calls to our pediatrician, I am now approximately one third of the way down the rabbit hole of applying for our state healthcare program. I will get rejected. I know this, because we are in that woefully unhelpful middle income level that gets no help from the state and also no help from our private insurance. But, we have a plan! Once we are rejected, we can be considered for the Katie Beckett program, which is designed to help families like ours, who fall in that financial pothole.
My hope is that we can get aid to pay for all the things that are not covered like diapers and horseback riding therapy and accessories to his wheelchair and handicapped-accessible house renovations. A week ago I didn’t dare hope for any of this.
I was deep in the pothole, feeling all my feelings—frustration with the system, anger at the injustice, heartache for Charlie when I came across a poem titled “Don’t Quit” by Edgar A. Guest. The poem is long, but the line that stood out to me is simple and sweet: “Rest if you must, but don’t you quit.” Don’t you quit.
There have been plenty of times that I have wanted to quit…when Covid hit us hard, when my husband was frustrated, but stuck in his job, when my own job was in limbo because being a writer doesn’t guarantee that you can flip creativity on like a light switch.
However, if you are a caregiver of someone with special needs, you know what I mean when I say you can’t quit. Because quitting isn’t just about you. If you quit fighting, you quit fighting for them. And that is not an option.
So here I am, filling out endless forms and having endless conversations with physical therapists and doctors and not quitting.
I will leave you with a few more lines from the poem, in hopes that it will buoy your spirits if you are in need.
“When things go wrong, as they sometimes will,
when the road you’re trudging seems all uphill,
when the funds are low and the debts are high,
and you want to smile but you have to sigh,
when care is pressing you down a bit – rest if you must, but don’t you quit.”
May you rest, catch your breath, and then keep going.
Jamie Sumner is a special needs mom and author.
Jamie-Sumner.com
Author of the middle-grade novels:
