SHARED BY NATHAN CHARLAN
EDITOR FOR STORIES FROM THE TRENCHES
Ebbs and Flows
Denial. It's something I wrestle with continually at various stages of life. As a parent of a child with special needs, it’s always a factor. It ebbs and flows, coming in and going out like the tidal waters of the ocean.
One of my major moments of denial centered around getting a wheelchair for my son, Z.
Now, while I’d love to not mention his diagnosis, I will anyway, understanding the curiosity of readers and wanting to spread knowledge and awareness at the same time. Z has cerebral palsy, a disorder affecting his muscle tone and movement. Cerebral palsy affects people differently, but for Z, it affects him head to toe, causing stiff muscle tone, making basic movements difficult and sometimes painful. He is also dynamic, meaning he can break out of his tone when he’s relaxed.
The reason I’d rather not mention the label is because he’s a person first and foremost, and it’s how he should be known. Too often, people overlook this basic component of humanity to focus on “what’s wrong with him” instead. Do us “typical” folks introduce ourselves followed by our own labels or diagnoses with what’s “wrong” with ourselves? My name is Beau, and I have depression, anxiety and anger issues; my name is Sarah, and I have low self-confidence and binge-eat when I’m sad; my name is John, and I am always trying to please people because of my mom issues?
In my worldview, every single one of us has some sort of disability—some are simply more visual than others. But I digress.
Facing the Truth
When Z turned two years old, his therapists recommended getting him a pediatric wheelchair. At the time, we blindly went forward with ordering one, only to discover it came with a $1,500 insurance copay, which all had to be paid up front.
Since we were young, broke parents, it wasn’t going to happen. My first subconscious thought must have been thankfulness—thankful my denial could set in for a little bit longer.
But denial always has a way of catching up with you. Truth has a nasty way of punching you in the throat, kicking you in the gut, and throwing daggers at your heart.
It was my fear of preschool that led me to face my denial once again. Z was quickly approaching three years old and would start a preschool program in a few weeks. With his current condition and abilities, it was very apparent he would need a wheelchair for proper school participation. I was left with the insurance option, which we had no money for, or . . . well, Craigslist, of course.
We found a decent wheelchair for a fraction of the copay price. It was the old chair of a teenage girl. The base bars were bright purple, and the girl's name was stitched on the back. After we bought it, we ripped out the stitching, and a medical equipment specialist got it adjusted for Z’s smaller size. My wife took my camouflage duct tape and wrapped the purple bars to give the chair a new look.
Z took his inaugural ride to church one Sunday, then again when we toured the preschool he would soon attend. Surprisingly, I became more and more accustomed to the idea of Z in a wheelchair and even felt more at ease, seeing that he’d be at the same height when facing those tall, rambunctious, touchy kids in the classroom.
Was my wheelchair denial faced and overcome? Seeing him sit up straight in his chair, wheeling him around effortlessly, and watching him enjoy the ride had a way of wheeling me out of denial in this area.
For the time being at least.
Denial still ebbs and flows, coming and going—one day here, the next day gone, only to return again in another area. It is the life of the parent raising a child with special needs.
I'm not opposed to the chair; I don't hate it or feel animosity against it. It's simply the denial. I always hoped he would eventually be able to walk, hoped that one miraculous day he'd stand and fend for himself, even if he was a bit clumsy.
I was in denial of the fact he would ever need a wheelchair.
It has been seven years since then. Z is now rocking his third manual wheelchair and loves cruising around independently in his power chair. His power chair is by far his favorite; he calls it his car and loves pretending to drive to other states or out to dinner.
While he continues working with traditional and alternative therapies, we always hold the hope that, someday, through technology or medical and scientific advancements, Z might be able to walk and stand by himself.
One day. Maybe. Hopefully.
But even if the day doesn’t come, I’ve moved beyond denial to accepting and embracing the wheelchair.
And denial will always find a new area in which to harbor. For years, my wife and I have been denying the fact that we need to get a fully accessible vehicle with a wheelchair lift and tie-downs. But with Z’s developing independence in his power chair, we are now facing the truth—we need a vehicle he can roll up and into, so he can take his power chair everywhere we go.
If only we could deny how crazy expensive those are.