How Does She Do It? Parenting With A Disability

“How do you do it?” is a silly question. We’re all bumping along the best we can with what we’re given.

The power of belief isn’t strong enough to undo a blow to the head.

It was raining. This should not have been a surprise. I live in Oregon.

I had to walk my daughter in the torrential downpour to school six blocks away with a positive attitude, although the last thing I felt was positive. We have to walk because I don’t drive.

Most of the time, you can’t tell I’ve got scrambled brains from a traumatic brain injury and a weird genetic disease similar to severe rheumatoid arthritis. My disabilities are invisible unless it’s a bad day or a flare week, so to some extent I understand the surprise when people find out.

 “How do you do it?” I am asked all the time. I never know if people are really asking, “How do you get it all done with such busy lives?” or if the real question is “How do you manage having a family and being disabled?”

It’s one of those questions that could be taken either sincerely, or as a backhanded compliment. Maybe it’s the thought of having to deal with a disability along with the everyday drama of life that people are reacting to. The unspoken question feels like “How can you be so optimistic with all… that?”

However well-meant, those questions are irritating.

My cheerful façade when we slog uncomfortably through the rain evaporates when I drop off my daughter and fold up the umbrella for her cubby.

Though the panic attacks I get when I try to drive are very real (as a result I had a car accident that caused my traumatic brain injury), I often feel like my limitations make me a failure as a parent. It is harder for me to shed the imagery of the other parents’ pity and questioning glances than my damp clothes.

Despite how hard I work to keep my daughter safe, warm, fed, dry, something simplistic for others (like driving) is impossible for me. Stupid things like that are symbolic of my larger feeling of inadequacy. The self-doubt is an old song that I’m trying to forget to sing. We aren’t walking in the rain for the exercise. We’re just trying to get to school.  

Admitting you can’t do things is hateful, but I don’t have the luxury to not ask for help.

It’s been long enough that I know that my disabilities won’t go away no matter how much I pretend away lingering effects. When I get tired my brain literally powers down like a computer. My legs drag, my hands won’t grasp, until I rest.

The power of belief isn’t strong enough to undo a blow to the head.

Besides working around not driving, my kids have always lived with the knowledge that sometimes they can’t touch me.

My family deals with my disabilities and associated disruptions pretty well. It is hard not to see myself through the eyes of other parents, or the eyes of my 14-year-old’s friends, when they ask my why his mom doesn’t drive and then, by association, “What’s wrong with her?” And he has to explain.

I hope my kids aren’t embarrassed. We live blocks from the schools, doctor, dentist, library, bank, and a couple restaurants. I walk everywhere, when I’m able. My husband works at a flexible job. I work at home. That’s how I do it. A lot of help and careful management of time and resources. It’s not rocket science.

I never even babysat before I had my own children. I also had to re-learn every ability after my brain injury; and, even as “recovered” as I am now, I wasn’t sure I could take care of a child. As it turns out, I’m pretty good at it.

Or at least I keep trying and I show up.

Besides working around not driving, my kids have always lived with the knowledge that sometimes they can’t touch me.

My genetic disease is treated by daily injections of a biologic medication and when my disease flares, it is too painful to move other than the bare minimum necessary to function. It burns me to my core that my kids have to understand this about me; that a small part of them has to grow up quickly.

My husband and I have tried to teach our kids to be more effective communicators and understand that all of our coping skills shift from time to time. The great flip side of that coin is that studies have shown that kids in families coping with chronic illness are more empathetic.

Reliance on our family and social network for help has strengthened those ties. We pay attention to the mental and physical health of all members of our family. Scheduling things works for us, so that’s what we do. We take turns so that everyone’s needs are met.

Overall, I try to keep a constructive attitude. The rain is temporary.

I try to focus on the gift of time spent walking with my daughter each day. That’s what matters.

“How do you do it?” is a silly question. We’re all bumping along the best we can with what we’re given. It’s who you do it with, and who you do it for, that counts.

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