Stumble a Mile in our Shoes
By Stephanie Brennell
I had a mountain of laundry to fold the other day; it just kept piling up higher and higher. I needed to sit down and make a grocery list, and then actually make a trip to the store. I meant to take the dog for a walk. I meant to take myself for a walk. I had medical appointments to schedule, floors to clean, and closets to organize. Instead, I found myself sitting with my third cup of coffee reading through a document over 260 pages long containing proposed Medicaid policy changes. It was 261 pages, to be exact. The document was incredibly long and incredibly dull. Combing through it was a task less enjoyable than anything I have done in recent memory. But poring over a 261-page document so you can submit public comments on nonsensical proposed policy changes that have the potential to impact the care and well-being of your child is just par for the course in the world of special-needs parenting.
Our eight-year-old son, Sean, was born with Norrie Disease – a rare genetic condition presenting with detached retinas at birth or shortly thereafter. In addition to navigating his world blind, Sean is autistic, non-verbal, and developmentally delayed. He is also the biggest ray of sunshine we have ever felt shining down on us. We have two other boys; Sean’s twin brother Zach, and our ten-year-old son Will. Our lives revolve around all three of our amazing boys, but Sean obviously requires much more support than his brothers. The hoops and hurdles are endless; if it’s not reviewing 261 pages of Medicaid policy, it’s reviewing IEPs and progress reports for school, it’s meeting routinely with a Medicaid Service Facilitator and a Medicaid Care Coordinator (which sound like the exact same role but are two different people from two different agencies), it’s scheduling medical appointment after medical appointment, it’s ensuring our supply of pull-ups gets approved and shipped by the medical supply company, it's trying to determine which services and appointments are covered by our primary insurance company and which are covered by Medicaid, it’s taking on the role of employer for Sean’s personal care attendants, it’s one thing after another…and it’s never-ending.
Not only will the workload never end, but it will also increase greatly as Sean gets older. The amount of research and planning for his future will be daunting. We need to ensure Sean’s financial security, along with caregiving and housing arrangements if the time comes when we are no longer physically able to care for him. Will and Zach will be off to college, and then on to start their careers and their families. We are on borrowed time with them, as most parents are with their children. But Sean’s future will look much different. And that’s okay. We want him to lead a happy and fulfilling life, on his terms.
I’ve had so many friends and family members tell me over the years they don’t know how we do it. They can’t imagine what it’s like to walk a mile in our shoes. To juggle everything that we toss into the air. To raise a child like Sean. I tell them that we were never given a choice. But if we had been, I would choose Sean all over again, exactly as he is. Because even though we are mostly stumbling and tripping along down the road instead of walking, we are still making forward progress. And what more could we hope for?
About the author:
Stephanie Brennell is a parent and PRRF FAC Member