Guys, I’m frustrated. It seems like there are about a million injustices that I’ve been facing lately when it comes to Elena and her disabilities. Advocating for her never gets easier and it certainly never lets up. If I am not constantly on top of things, it doesn’t happen. And sometimes, well most the time, it’s exhausting. Often, I find myself throwing in the towel just for a short bit so I can gather myself mentally to keep up the fight.
Whether it’s “petitioning” insurance to provide my daughter with, GASP, two different positions (a wheelchair AND a stander?!?) at home or how incredulous the lack-of/non-existent accommodations airlines are required to make for people with disabilities, it all sends my mind reeling and my inner-Mom finger wagging. This world our family is required to navigate is filled with road blocks at times. It’s 2017 and our country/culture has come so far in the fight for people with disabilities, but it still seems so archaic in so many ways. The disability world is still new to me and perhaps the longer I’m in it, the more I’ll get used to it or better yet, maybe things will get better.
I know I can be hard on myself a lot, and I am reminded to give myself grace daily. Chad and I are constantly making sure that we are doing our very best for our kids but especially for Elena, just because she needs it. But, I’m frustrated. It feels like I’m failing my girl in the one area that, right now, seems most important.
Recently I left her weekly speech therapy appointment, where we have been working with her communication device, in tears. For an hour, I watched the most beautiful, happy little girl struggle, utterly struggle, to do the simplest of tasks. The task was to point her head at a button on a screen to communicate one word. Think about it for a second. It's something I can do in a millisecond with little, to no effort. But it took an hour for her to select merely four to five words. I watched her little body and mind work so hard, every ounce of my insides were willing her to do just the tiniest of movements. I was overwhelmed by the feeling that I'm failing her, an admission that wrecks me.
All I want is for my daughter to tell me something SHE feels or wants or needs. Not for my sake. For hers. She has spent six years with a present, clever little mind that holds so much goodness, but does not allow her body to do its part. Six years without a word. Without telling me her tummy hurts. Without telling me she loves me. Without telling me she wants a hug. Six years of us guessing what she wants and needs, and without the ability to tell us just how clever she really is.
I've watched thousands of hours of Elena struggle through many therapies, whether it was Physical Therapy, Occupational, Speech...that's what therapy is, it's basically struggling for an hour at a time, pushing your body to do something that it does not find natural. For whatever reason, this particular hour got me. As her Mom, it's my duty to seek out every opportunity for her. And that includes, finding a way to give her a voice. I feel like I'm doing everything I can in every way for her, but still, I'm failing. Six years later, I still am unable to help my little girl get what's inside, out.
And so, I’m frustrated. I’m guilt-ridden. I’m sad. This is something that is on my mind every single day, a constant lump in my throat. For the first time I can remember, I’m afraid I won’t be able to maintain the strength I need to endure all the failure it will take to find Elena’s voice. Yes, there has been success on this path, but man, it is a roller coaster unlike anything. I think it’s because, in my opinion, this is the most critical human need, to be able to communicate. Sure, walking and eating are huge and would give Elena independence, but it terrifies me that she may never be able to tell me something on her own. There’s so much technology, but Elena’s challenges are so great. I’m not sure what my expectations should be. There’s just so much at stake. And I’m just not sure what to do.
There’s no positive message on this one to wrap it up. This is where I am. Frustration. Yes, fear. Hope. On this one though, I’d describe it as cautious hope. I dream of her being able to tell me everything that is on her precious mind, but also have to remind myself that scenario may not happen on Earth, and challenge myself to be okay with it. But, there isn’t giving up. It’s frustration, hope, failure, try again.