My mind often replays the day we found out Adriana has spinal muscular atrophy (SMA).
Like scenes from a movie I haven’t seen in a long time.
I remember bits and pieces of dialog.
I close my eyes, and I see some of the characters that crossed our path that day.
I remember calling certain people to tell them the news: my parents and siblings, our friend Ruthie, my boss Linda.
I don’t remember all the words that were spoken, but I remember the act of dialing and holding the phone to my ear.
I remember telling our daycare provider, Robin. She helped us raise Santiago, and we were starting to send Adriana to her.
She runs her daycare out of her home, just down the street from the house we had in Littleton.
I remember the sadness in her face when I told her about Adriana.
Wheelchairs are for other people
One word I remember hearing that day was “wheelchair.”
It wasn’t spoken often, but it sat there in the back of my head most of that day, like an annoying fly buzzing around and around.
“Adriana will most likely need a wheelchair the rest of her life,” the neurologist told us.
I’m almost certain she said those words: “…the rest of her life.”
Maybe I planted the words myself.
We were devastated, and I may have been painting my own devastating picture.
I remember the drive back home from the hospital.
We were in our new Nissan Leaf, which we’d bought a few weeks prior.
Gaby and I started to talk about having to return the car because a wheelchair wouldn’t fit in it.
We’d need a large van.
It was a short conversation, but it was an example of what our lives would be like from then on. Lives with new unknowns and new uncertainties that would lead us to make decisions long before we needed to.
I don’t know when it happened, but at one point we decided that putting Adriana in a wheelchair meant we were giving up on her.
That we were giving in to the disease and all hope was lost.
That indeed she would never walk.
I remember people commenting that we shouldn’t think about wheelchairs or think in terms of “handicapped accessibility” or “special needs” because Adriana was going to walk.
Those comments always seemed to flow easier from those who didn’t live with our reality.
Those who weren’t facing the same decisions we were.
They meant well, of course, but they didn’t quite know what we’re facing.
I would liken it to me – as a man – describing what it feels like to give birth.
Until I actually experience it, I really have no clue.
I mean, I have lower back pain, but it doesn’t really qualify me to describe labor pains.
It’s hard to accept, but we do what’s hard
Gradually, we began to realize that Adriana needed to learn independence. We also realized that, as she grew, it wouldn’t be possible for us to carry her everywhere.
She would need a wheelchair.
As much as I wish I could delete that last sentence, I now realize we can’t.
She would need a wheelchair.
And so we began….slowly.
At first, we drove the chair from the controls in the back and just had Adriana take in the experience.
There were times she seemed to enjoy it. Other times, she would cry when we told her we were going for a ride.
Then, she started controlling the chair.
We were always nearby, in case she came too close to a wall or a parked car.
Her arms would tire quickly, as she struggled with certain movements. With only her right hand on the control, she found it hard to steer the chair to the right.
She learned to use both hands when she couldn’t control the chair with one.
Little by little, Adri’s gaining confidence with her chair.
She’s getting good at making turns, and she knows when she’s coming close to hitting something or approaching a bump in the sidewalk.
She stops, changes directions and continues on…quite patiently.
She also seems to realize that she herself is creating the motions. Although her legs aren’t taking her, she’s moving herself from point A to point B.
It’s going to take a while because she still prefers that her cousins or I
Her skills of manipulation are honed, and she’s good at getting what she wants.
A little whining here or a crocodile tear there, and we’re quick to take her out of the wheelchair and carry her where she wants to go.
I’m more than happy to do it.
Until that day comes when she breaks free of my embrace and walks with her brother, hand in hand.