Cerebral palsy is never far from my mind. I hate how my life is governed by the condition and digestive problems. Being premature and struggling with digestion problems mean I can't plan ahead, do days out, or do holidays well.
Just going for a walk interferes with me being able to function normally. I hate being tired and having to concentrate so much on my stepping, losing concentration anyway and tripping up. It takes a couple of hours for me to recover from a half hour walk.
Unfortunately, my frustrations are my family's frustrations too. They're irritated, I am tied to the condition and there's nothing I can do about it. Because the condition is mild it also makes what I deal with more difficult. It's not like a broken leg where everyone notices and the sympathy is there.
I find myself having to fight to find a place that fits in with everyone, for them to be okay with what I deal with and I hate that.
Sadly, now I understand why it is that my daughter has been so hesitant to do things, because it must turn out to be so very tiring, just thinking about doing things!
It just makes me feel very stupid, as a parent that I didn't catch on to that before, until I saw it in black and white. It's far too easy to tell somebody they should be doing something when you're not the one having to do it, with the physical limitations that Cerebral Palsy causes.
I have no excuse for my behavior, other than being pressured by someone to push her to do things that she thought she should be doing, without considering the difficulties.
I have my own issues mentally that make it difficult to do certain things, so I should have been able to relate! Unfortunately I am only human and have been shouldering all over myself and everyone else, most of my life. It's no wonder I have detested myself for so long, because I couldn't stand the person I had become.
I almost think it's so much worse being intelligent and knowing exactly what it was that I was doing wrong, but seemingly unable to stop myself from doing it. I sometimes envy those people who will never know how damaged they are, so it doesn't bother them.
It can be so very frustrating when trying to do the simplest tasks, sometimes feel like trying to pull off a Broadway production.
I'm just trying to figure out how to do the things I can and stop torturing myself for simply being human!
Unless we consciously think about things, we don't think about what other people may go through or have to deal with. Having Cerebral Palsy has opened my eyes to other people's difficulties, definitely.
I'm not sure I'd be too hard on yourself though. You've had difficulties to deal with yourself. You didn't miss the signs about your daughter because you were living the high life. As you've intimated Randy, you had your own things to deal with and that took you away from your daughter.
I think it's important for those of us who can support and help those who need help, regardless of the less pressing issues of what we may have to deal with.
In those circumstances there is no excuse; but as you say Randy having your own issues mentally puts a different slant on your life in so many different ways; not your fault and that will always affect your relationships.
As long as we're up front with our children and don't shy away with a list of excuses, other than the real reason, our children will understand.
That shade of a smile across your face when you were a child speaks of your innocence, but even then you didn't depend on others to give you strength. You've been looking inside yourself forward.
But what is normal? You blink twice and squint and you'll see that you're made of nothing more than you, and that's beautiful.
Thanks Tim. Yes, what is normal? Normal is different to everyone, but I'm normal in my own way, just a different normal.
You've certainly opened my eyes. What you say in your response in your first paragraph about me, ties in with something my father once said about me.
What he said didn't register until you said it just now, about looking inside myself forward. I don't rely on anyone but myself. I was always emotionally independent of my growing up family.
As I continue to make headway and sense of my life to this point, that is exactly what I continue to do. Looking inside myself forward allows me to reflect, debate, agree, disagree and find an acceptance on things, particularly the things I can't change.
I know I certainly couldn't write in the way I do on a wide variety of topics and run The CP Diary; without it.