I remember being in the car and my father telling me I wear my clothes well. To me it sounded rather odd, but I took it as a compliment, it wasn't often you got compliments.
Scoliosis
I never knew I had scoliosis. The idea that I carried myself well, unaware of what I thought I had, unsettled me. The more I thought about it, the more it grated at me.
With cerebral palsy, when my arm rests straight, my left side naturally pulls down. I’ve noticed it since childhood but dismissed it, never questioning why. Now, I understand. Wearing certain clothes highlights it – like a string top slipping off my shoulder, a reminder of the imbalance. Small things, yet for me they carry a lot of weight. Some days, I let them go. Other days, they linger.
Irritations
It frustrates me that I’ve had to navigate my disability on my own, piecing things together over time. What troubles me more is the weight of being seen through the lens of my mental and emotional struggles – judged for what isn’t visible, rather than understood for what is.
It's a Parent's Job to Give us the Tools
It’s the things I now have to think about and deal with that leads to my irritations. The point is that knowing about my disability much earlier, would have given me time to come to terms with my struggles sooner. It’s not something I can change now and it was also not something I could talk about as a child. I am thankful for my Diary, because now I can talk about these things.
Yes, I can relate when you talk about your irritations, about things that you could have dealt with had you known about them as a child.
My parents forced us to act like nothing was wrong, when it was glaringly obvious that we had some very serious problems that never seemed to get addressed.
My mother had serious mental health issues so it's no wonder that she relied so heavily on the prescription plan. My dad had his own issues with alcoholism, which my mom always chastised him about on a daily basis, which only made him want to drink even more.
It just boggles my mind that they forced us to live that way, seeing as most parents try to deal with their children's issues and help them to learn how to live with them.
I can honestly say that I did try to do the right thing with my daughter, trying to help her deal with her cerebral palsy, but by not dealing with my own issues, I totally screwed that up. I tried very hard to do better than my parents did, but ended up being worse which I haven't been able to forgive myself for.
There wasn't any excuse other than I didn't know how to fight for my own rights, let alone fight for my daughter's rights, and I still have a very hard time living with that.
There are so many things other people would consider minor irritations but they didn't grow up in the same kind of world that we did.
I'm sure that your blog helps, but it still doesn't help to erase all those years of not getting what you needed, which I can definitely relate to.
Thanks Randy. I love that you know what you've done, you know where you have failed and you make no excuses. You're a breath of fresh air. Not everyone makes mistakes and then owns up to their mistakes. I love the fact that you do.
Yes, you're right, my blog helps with my irritations and understanding my circumstances helps further. It doesn't take away from those responsible.