Coming to terms, with terms.

There's no question that the journey of a special needs parent is one that almost nobody is prepared for. I wasn't. The thing I find most peculiar are the things that hit you, and make you worry and question. The things that seem so incidental, but are heaviest. The words that meant nothing, but now mean everything. Everyone's journey is different on this path, but for some reason, what hits me most are the words.

It started early on, being frightened of simple terms like Autism and Cerebral Palsy. Imagining our future with those words tacked onto us made me so frightened. Eventually, I came to accept that my daughter defined those terms, not the other way around. Autism didn't mean she'd never marry or leave our home and Cerebral Palsy didn't mean she'd never play on a playground. They were just words.

I know this, and I know that words shouldn't bother me, but yet they do.

It started a few weeks ago at a neurology appointment. I injured my back several months ago carrying Luciana. I'm not a strong person, but I'm also not one to complain, but it has come to a point where I can no longer carry her. I asked for a script for a wheelchair for Luciana, so that I could continue to take her places.

Immediately I questioned myself, did my daughter really need one? Our physical therapist seemed to agree, at least in the conversation my husband had with her. She didn't understand why she needed one. And that, made me feel weak and inferior.

But the truth of it is, she's only worked with my daughter for a few months. She isn't there when I have to rub her sore legs, or she can't go on any further without either myself or my husband carrying her. She isn't there when she screams as I put her in or out of a shopping cart, because she's just too big for it, but she doesn't have the stamina to get through a store. No one is, besides us.

Just like our parking placard, I feel so guilty and judged for this. So guilty and judged for needing assistance, and not pushing through. The truth I really need though, was right there all the time.

"Paraparesis", another scary word to read about your child, but it's right there, in black and white on the order for the wheelchair. Partial paralysis of the legs. That is our truth, that is what we live with, and I don't want to discount or disenfranchise the very real struggle that exists, and that we try to overcome every single day.

So in the meantime, I'm reminding myself that a wheelchair will open up the world to us, just like the parking placard did. It will make it possible for me to do more with my daughter. It will mean trips downtown in the summer and walks through the mall. It will mean long meandering days at the arboretum and trips to the pool. It means access for us, and I will not forget that.