Who I Am as the Mother of a Child With a Disability

The other day I had a doctor’s appointment. The woman at the registration desk asked me if I was working or unemployed.

I hesitated.

“I’m a stay-at-home mom,” I said.

She said nothing and began clacking away at her keyboard again. I watched her keystrokes spell out “unemployed.”

Later that afternoon, on my way home from that appointment, I began thinking about her question and wondering why I had hesitated.

Was I ashamed of not working?

No. It didn’t have anything to do with shame at all. I hesitated because, while yes, I’m unemployed in the sense of the word,  I’m a stay-at-home mom, working my butt off every day to raise my kids. What I do cannot be summarized into one category or one word.

But I’m not just a stay-at-home mom, either. I’m a mom to a child with a disability. This role requires me to wear many different hats in order to care for my son, Roland. To him, I am not just “mama.”

I am his nurse, feeding him via g-tube, making the necessary g-tube changes, preparing medical supplies, administering meds, taking vitals and making phone calls for referrals.

I am his advocate, constantly pushing doctors, therapists and school staff for what he needs.

I am his voice when he cannot tell others what he wants. I educate others about his likes and dislikes, and raise awareness for his condition.

I am his teacher, putting together learning opportunities and activities, reading to him, teaching him about his world in a way he can understand.

I am his physical therapist, stretching him to prevent contractures, motoring and supporting him through different positions to build his strength.

I am his occupational therapist, adapting our world to meet his needs, allowing him to interact with (and participate in) all of his environments.

I am his technician; I know his wheelchair like the back of my hand. There’s nothing I can’t do with the right allen wrench.

I am his social worker, linking our family to the resources we need to survive.

I am his researcher, spending hours online, reading medical journals until I can barely keep my eyes focused. I search for a diagnosis, I search for answers, I search for ways I can make his life better.

I am his historian, always photographing, documenting and scrapbooking our life.

I am his translator; I’ve become fluent in the language of Roland. I act as a go-between for Roland and the rest of the world (and I love that we share this special bond).

I am his paraprofessional, following him around at preschool, motoring him through activities that all of his peers do.

I am his protector and his bodyguard, saving him from his little brother’s rough affection, teaching others how to properly lift him to prevent injuries, guarding him when strangers don’t respect his personal boundaries.

At times, I am his hands, his arms and his legs. I lift, I carry, I walk (or run) with him in my arms. I go down slides, I swing on swings, I race down sidewalks. I help him paint, color and play with toys. I feel as an extension of his body.

I am his personal entertainer, singing, dancing and acting crazy just to see him smile.

I am all of these things.

An unemployed, stay-at-home mom, yes — but so much more.

Follow this journey on All Things Considered.

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