While these feelings are not unique to mothers of children with special needs, one thing all mothers of special needs children will tell you and one thing we all agree upon is that our feelings are hyperbolized because the stakes are higher: everything about having a child with special needs is more emotionally and physically intensive. There is no break and there won’t be a break because there is a level of dependency that will never end for us. This makes our joy and passion greater too, which none of us would trade you for. So, we still feel like we got the better deal.
But, the day-to-day living? Fucking hard.
Writer Sondra Perl reminds me, “Writers know more fully what they mean only after having written it.” And this is exactly how I treat my blog space. Someone says something or I hear something or I experience something with Will and it hammers in my head. It’s this light tapping that turns into a “BANG>BANG>BANG! “ as if it’s trying to drive a screw instead of a nail through the other end of my skull. And after a few days, if I can’t ignore it or at least dull it with work and wine, I write and I try to figure out how I finish driving that nail without splitting my sanity. Writing is how I rid myself of that extra fear, that extra sadness, and how I try to capture the joy. Or at least diminish the noise.
I was re-watching one of my favorite movies, Radio: the true story of James Robert Effinhimer Kennedy who loved and collected and always carried a radio, hence the nickname. Thanks to an empathic coach at the local high school who saw Radio as more than disabled, Radio was able to attend school and assist with a game he loved, football.
The movie came out in 2003, the same year Will was born. I used to teach a sports literature class, so of course, I love and watch all sports movies as well. I love watching the movie Radio. I find solace in his character because I am a mom to a Radio. Will loves football and would do anything to somehow be part of a team. And like Radio, he too would be obsessed with the routine and would love everyone on the team who loved him back.
I feel good when I watch the movie. I watch it when I want to cry and keep the faith. Coach Jones’ story of making a choice to stand up gives me hope that others might some day do that for my boy. But, the movie is also equally disturbing to me. When Radio’s only caregiver, his mother dies, his entire life falls apart. He becomes violent, destroying his home. He wonders who will make his sandwiches, where he will live, and when he will see his mother again. Crouched on the floor in a fetal position, crying out with a primitive half scream/cry, he asks over and over to Coach Jones, “Where’s my Momma?”
I just dropped Will off at his first over night camp this week. It took us three years to even consider letting him go and a year to prepare for in terms of paper work with his medical team and mentally a year to convince myself that he should go. It took me days to prep and pack his meds and supplies for the trip. The transition with the one on one counselor and team of nurses and doctors set up for a camp for 30 severely disabled kids took five hours. Our check-in took the longest. The most medically involved kid at one of the most medically involved camps.
We brought file folders of papers for the team with “what to do if, you hear him make this noise or what to do if, you see his skin do this or who to call if you see him do this.” And the warning labels were long. DON’T let him ride a horse. The catheter in his spine isn’t stable enough. DON’T leave him unattended in a bed or in his wheelchair. He will and can roll over and get out but can’t get himself back up. DON’T let his face go underneath water. He has extreme dysphagia and he will inhale water into his already compromised lungs. And, PLEASE stick to the schedule where he receives life supporting medicine and formula delivered via a feeding pump every hour.
When we were finally ready to leave, Will got scared. He was lying in his new bunk in a room with six other boys who, like him, were also alone in this space with a group of strangers. He looked around and realized he was going to be staying and we were going to be leaving. Seeing him and all of those boys lying in the cots, helpless and quiet and waiting for something they didn’t understand suddenly struck a horrific fear in me. I had to step out and go to the bathroom because I was afraid I was going to throw up. I returned and looked again. This is where Will will end up. He will live in an institution with other severely disabled men totally reliant on whoever is there to change him, sit him up, feed him, and care for him.
My husband, Jim, felt it too and we started to suggest we just take him home, that we didn’t think this was going to work. The counselors and team at Camp Riley are used to first timers like us and they convinced us to let him stay. And they are wonderful and highly trained young people. I was never that good at their age, not even that good at my age now. They love kids and their work. And this is only for one week so they are prepared to give and give knowing they must make this one week really special for the kids because it’s a once in a lifetime experience for them.
But, what will happen when Will lives day-to-day in a place like this? He’s an only child and we have little to no family. And of that family, no one is interested in caring for Will short term and certainly not long term.
Will they put the bed rails up? Will they over feed him? Will he choke? Will he sit in his own urine too long? Will he get to watch football? Will someone read to him? Will someone take him outside on walks? Will someone hug him and kiss him or will they hug and kiss him inappropriately? Will they know if he is hurting? Will he be happy?
Radio understood that his mother was dead, was no longer there. My Radio, my Will won’t. Will he think we just left him? That we abandoned him? Will they know how special he is? Will they make his experience special or will they just see him as a body lying on a cot?
Bang. Bang. Bang. Bang….