Wheelchair? Not for my child, thank you!

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.”

swc_adri_mama

Adri began with her standing wheelchair. Here, she shows mom how to play one of her apps on her iPad.

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.

wc_adri_turning

Adri maneuvers with both hands as big brother, Santi, keeps a close eye.

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.

wc_santi_adri_discussing

A serious discussion between brother and sister.

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.

Adri’s acceptance

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

wc_santi_adri_walking

An agreement is reached, and they continue together to their aunts’ house.

carry her.

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.

3 thoughts on “Wheelchair? Not for my child, thank you!

  1. Adri motorizada! Es normal que sienta cierto temor y desconfianza pero es un gran avance en el manejo de su autonomía.

    Dile a Gaby que te muestre una foto que le tomamos a un remolque muy pequeño para llevar la silla! Por esas coincidencias en la que se te cruza la persona indicada en el momento preciso, nos encontramos en el parque con el socio de Israel que tiene un taller. Vio la foto y nos dijo que le mandemos la foto, ellos la pueden hacer. Seguro no será gratis pero no creo que nos cobre mucho por ser el negocio que tiene con Israel. Ya te contaremos!

    Vuelo a leer tus post, me transmiten un poco de la fuerza que ustedes tienen. Sé que aveces sientes que no tienes esa fuerza pero creeme que SI la tienes, te admiro como papá apoyando siempre a Gaby en todo lo concerniente a los niños como una labor compartida por igual y eso requiere de fortaleza. Hay muchos papis asumen que hay muchas tareas que son exclusivas de la Mamá. Tener ese soporte de tu esposo tiene un gran valor para nosotras. Voy a planear con Gaby nuestro prox paseo luego que Adri esté mejor. Saludos!!

  2. Beautiful Carlitos! The first picture did not appear on my copy, just “X-swc_adri_mama.” But I could click on that and see the pic. dad Date: Sun, 30 Mar 2014 02:29:33 +0000 To: gomez.ed@msn.com

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