Tuesday, October 11, 2011

On Causes and Labels and Disability Awareness Month

"Strength does not come from physical capacity. It comes from an indomitable will." - Mohandas Gandhi.

October is Disability Awareness Month. B volunteers on a local government advisory board, and they've been planning various activities and talking about ways to promote disability awareness. As I googled and looked for events near us, I had a brief moment of thinking "is this 'our cause?'" I'm not sure this is something I'm going to be able to really articulate, but I guess I struggle with balancing making Sam's "disability" a "cause" versus not wanting it to be the focus of our lives to the extent that "disability" somehow becomes a label that OTHERS use to define her or to distract from all the other aspects of her (or us as a family). I WANT to make others more aware. I WANT others to be more sensitive, empathetic, and understanding of my girl. I WANT local establishments to be more accessible to people with varying disabilities, but at the same time, I don't want "disability" to be what people think of when they think of Sammie B. Because she is so, so, so much more more. When I post little pictures of her at therapy on facebook, or note her accomplishments there, I'm always conscious not to be too therapy-centric on facebook, if that makes sense. I KNOW that our reality, our normal is a little different from some of our friends with typically-developing children, and I guess I want to share the magic and determination and spirit of my girl in every way possible, but I don't want them to think that THAT stuff (therapy, disability, CP) is our lives. It's not. Yes, there are things about CP that make our lives a little more challenging (ever tried shoe shopping for a three-year-old to find shoes that fit OVER an orthotic?), but that doesn't mean CP defines us or our girl. It's just part of our new normal.

Another blog I read often refers to the things that are part of their lives because they live in "CP Land." It is true. My world - our world - involves a lot of therapy, some equipment, and appointments that others' lives may not. As we transition to this new PT (who so far, we love), we are trialing new leg braces, gait trainers, working on things our old PT didn't pick up on (and yes, there's a little regret that we didn't switch sooner, but I'm trying to NOT look back). Sometimes, I feel like we are taking steps backward - but I know we are still headed in the same direction (forward!). For example, Sam's been willing (and loves) to take assisted steps for a long time. She loves walking when we hold her trunk. But, because the leg braces she was wearing are hard plastic, it was kind of like she's walking in a ski boot - knees locked, heels first, weight shifted backward (try heel walking, you'll understand) . . . the new PT, who I've said before is just so very perceptive, had an idea to try a different brace for Sam. Neither she nor our orthotist have ever used this particular brace (Kiddie Gait) on a kiddo as young as Sam, but thought it was worth a try. We just have a trial pair now, but we can already see less knee-locking. And, now, instead of just holding her up and letting her fling her legs out to take steps, we are really working on showing her and talking her through how to make very functional purposeful steps with her knees bent and pushing through her weight on her whole foot. There's a learning curve . . . she's taking smaller, more timid steps, and sometimes getting her feet tangled, but I know that's just because this is new to her. The steps themselves are just more functional. So, a few steps backward, but headed in the same forward direction.

Since we got the clinical CP diagnosis (meaning Sam presents as a kid with CP, even though she had a normal MRI, because we've ruled other causes out, we've sort of landed ourselves a CP diagnosis), I've said "my daughter has CP" several times (during the IEP assessment process, in doctors' appointments, etc.) Sometimes, I say it and don't bat an eye. Other times it stings. I've realized it is easier to say "my daughter has CP" than to feel like I have to explain the developmental delay, our search for a diagnosis, etc. etc. There are moments I appreciate the ease of this, of not needing the 20 minute explanation that always drew opinions/thoughts I didn't necessarily need (e.g. my OB throwing out her own ideas of what "it" could be even though we've seen a trillion pediatric specialists who've run a trillion tests). But, then there are moments (like in her IEP) when the words are spoken and sound so clinical --"Samantha has cerebral palsy" -- that I get a lump in my throat and tears in my eyes.

These things are - no doubt - a big part of our lives. With this third-trimester insomnia in particular, my head swims with thoughts of IEPs, therapy, new braces, etc. at night (I would say my anxiety about these things isn't CAUSING my insomnia, rather, the insomnia is just a breeding ground for the anxiety!), but our days . . . are NOT defined by Sam's disability. They are defined by the other stuff. The stuff that REALLY makes her who she is . . . her magic, her grace, her sense of humor, her smile, her giggle, the love that just emanates from her, her determination, her strong-will. All the things that make her magical Sammie B.

I guess what I'm trying to say (and not fully able to articulate) is that while we need friends who are emphathetic and understanding of the ways in which our reality is a little different and sometimes more challenging, we don't want them to see just that. It is kind of like when people do that annoying thing where they are telling a story about someone -- completely unrelated to their race or ethnicity -- but they still describe the person as a "black guy" or whatever. As I've become more entrenched in this SN world, I'm more sensitive to it. . . and I often hear people talking about someone they know whose son is autistic or who has CP, or whatever "difference" when its totally irrelevant to what they are saying. I guess I just hate to think that people describe Sam as "a little girl with CP" . . . she's so much more, and I feel like that description -- that label -- discounts her magic in a way that just hurts my heart.

So, if there's anything I want our friends and family and Sammie B's fans to take away from this disability awareness month and the glimpses into our lives that they have, it is this:

"Disability" is just a tiny part of our girl. Just like your eye color, or hair color, or the shape of your nose is only a tiny facet of you. The other stuff is so, so, so much more of "who she is." And, while much of mine and B's time and thoughts and efforts go into finding ways to empower and enable our girl because of her disability, those efforts do not define her or us as a family. We are so much more.

We have this magical little girl that makes us more "aware" each and every day. She teaches us every single day. And while there are certainly parts of this journey that are harder than others, and while we may not have envisioned this path for our child (or us), we are so, so blessed to be walking this path with her. And, not a single day goes by that we don't think of her -- and our lives -- as a blessing.

My girl will do amazing things in this life. You just wait. (She already is!).

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