Heavy Lifting, Heavy Heart
by Lyn Jones
My last three Facebook posts read like this:
Bad news from Will’s ortho surgeon. His hip is getting worse; the patch last summer didn’t hold. Big decisions to make; it’s a very scary surgery and recovery for a kiddo like Will.
Mom and dad are sad and hurting today over the news of what will be Will’s 34th surgery.
Day of highs and lows. My life as a special needs mom is hard, really hard. But, my sanity is always restored at Indy Fast. And today, I broke a PR, 180, on the dead lift. So while I never feel strong in the decisions I have to make with Will; I always feel strong at IFast.
Let me unpack all of this for you.
I have a son, Will, who has severe Cerebral Palsy and Autism. And I am a competitive power lifter. Please don’t confuse bodybuilding with power lifting. We aren’t interested in sculpting bodies, but in lifting as heavy as we can.
In power lifting, we strength train and work on three lifts: the Squat, the Bench, and the Deadlift. Throwing a 150 lbs. on your back and sitting down and standing back up again is exhilarating. Pressing 100 over your chest means your body has to be in total control or that bar is going to crush your chest. And bending over and pushing your feet into the floor and pulling 180 pounds straight up from the floor and pulling it up to your hips and then gently setting it back down again like a cup of coffee makes you feel like you a bad ass.
In fact, most of the time as a mom of a child with special needs, I feel powerless, I feel powerless when I look at an X-ray or an MRI of Will’s body, and I see lots of white forms and shapes: a Gtube, a Baclofen pump the size of hockey puck, a kinky catheter line running from the pump into his spine, and layers of heavy, white scarring at multiple sites on his legs from lengthening’s and on his lungs from multiple pneumonias. And bones turned in and joints not seated correctly and pronounced bones in his knees, hands, and elbows from 11 years of dragging his body across the floor in an attempt for some mobility freedom.
This was to be the first summer of Will’s 11-year-old life with no surgery because the patch from last summer was supposed to hold longer. But, it didn’t. His hip is rotating out. When it comes out, and it will, he has a 50/50 chance of having no pain or horrific pain.
The surgery involves breaking both hips, reconstructing both hips by placing pins and rods from the knees to above the hips on both sides, a body cast with a hole for output, and 8 to 12 weeks of lying in a bed. It’s a very long surgery with many risks and complicated wound care. Six months later, the surgery is repeated as the pins and rods are removed. But there is a 50/50 chance the surgery won’t work and the hips will come out again and the surgery would have to repeat.
It’s our decision, say the surgeons. It’s really a crap shoot, they say. He could struggle to come out of anesthesia and maybe not recover, and he is at high risk for infections, but he is also at high risk for seizures if the pain is out of control. Let us know what you decide, they say.
I wrestle with this and a hundred other no-win situations with Will all the time. Any parent who lives this life gets it.
So, I lift.
I lift to get out of my head for a while.
I lift to stay strong for Will.
And I lift, because when I lift, all I have to do is control one bar. People think it’s hard, but compared to the rest of my life, it’s easy. It’s me versus the bar.
I have little to no control over anything that happens to Will: Every day, I send my nonverbal and medically dependent child to school with a nurse, drivers, teachers, therapists whom I hope will treat him well and with compassion and quality care.
I leave him in the hands of 9 pediatric specialists and multiple clinical therapists that I hope will diagnose and treat him expertly.
I leave him in his hospital bed at night with the monitor on hoping he will wake up the next morning.
And when I lay him in that bed, I too lie down, flat and heavy from the burdens of the day, trying to convince myself to sleep. I need it because tomorrow I will be lifting heavy again. Lifting my heavy heart, my heavy boy, and that heavy bar.
About the Author
Darolyn “Lyn” Jones is a mom to a son with a disability, a wife, a teacher, a writer, a sister friend, and a social activist. She is an Assistant Professor in the Department of English at Ball State University and the Education Outreach Director of the Indiana Writers Center, where she has facilitated several urban outreach writing programs, including Girls in Prison Speak, Sitting at the Feet of our Elders, Building a Rainbow, Recording War Memories, CityWrite, and Special Needs Moms Write. Lyn is passionate about literacy and has devoted her personal and professional life to teaching and writing with writers both in and out of the classroom. Check out her website, publications, and blog at http://www.darolynlynjones.com/.