Tuesday, December 31, 2013

Life with Disability: My parents the superhumans

"One day you'll turn to me and say: 'Dad, why didn't you push me even harder or whip me to force me to exercise more"- said my dad to me some twenty seven years ago. As if there was a simple correlation between doing my routines every day and jumping out of my chair that I would have regrets about as I got older. Through most of my writings I avoided criticizing them directly. It's not that I  agreed with everything they have done, but I didn't want the little issues to overshadow all the things they have done a sacrificed for me. Their health, their strength and their patience. To me they always will be the champions on the front of the war on Cerebral Palsy. I didn't want to seem ungrateful for all that they given to me and how they thought for me, sometimes by fighting me in a collaborate effort to get me where I am today. My parents were never perfect and didn't pretend that they were, but every time I mentioned something my parents did that I still don't understand or don't agree I felt I was giving a skewed account of my childhood. Because the good parts and the bad parts don't compare- and by dedicating much thought to where my parents may have been wrong I felt I was blowing it out of proportion and doing them a great disservice. But then I got to talk to a lot of parents in America. Mothers and fathers of kids with my disability who hope to give as much to their offspring as my family did. And pray that one day they will be as active and accomplished as I turned out to be. The flipside to continuously talking about my parents putting me first and doing everything they could to make me better was their feeling of not quite measuring up. My parents were not perfect, but I never forget that everything I am is because of them. And while there are things I disagree with I look at them with fondness. Because I understand where they were coming from. Fear. Fear for me, fear of what will become of me when they are gone, fear that every second I'm not moving, exercising, getting better is a moment wasted that I can never get back. They felt we have a small window to help me improve. A window that would shrink with every year that passes. That fear had to had been eating away at their core. Making them and our lives intense- trying to do as much as we could so we wouldn't turn around pinpointing to all the things we should have done. For many things, when in comes to my mother and father, I'm in awe. But I don't want to make it seem like I'm impossibly  raising the bar for other parents. Mine were  not superhumans although looking back, they often feel like they were. Parenting is about choices - I never claimed we made all the right ones. 27 years later  I don't wish my dad had whipped me more, but I also don't think of "not walking" as my life's most profound regret. I try not to dwell on what may have been, but yo make the best of what I have. And I think that's their greatest gift. To CP parents who contact me fearing they're already doing something wrong and missing opportunities I say: that is the sign that you're doing something right. Mine were the same way. Use your best judgment and do the best you can. Isn't that all you can do, anyway?

1 comment:

  1. It is always so refreshing to read your essays. What I am about to tell you may not represent the opinion of all parents with special needs but the thoughts of me, as a parent of a little girl who happens to have cerebral palsy. I personally do not feel that any sacrifices are being made. I do everything I can for my 6 yr old does not have disabilities as well as my 2 yr old who does. Obviously, the needs of my 2 yr old are not ordinary and may require at times more effort, both physical and mental effort, but by no means, there are any sacrifices being made. We are just being parents. We are fulfilling the needs of our children whatever those may be. We are doing what we need to do to help them reach their full potential. We read, we research, we cry, we prioritize, we fight, we learn, all those things we do with love, because we love our children. I am sure that your parents feel the same way, because they did a great job with you. But even though our efforts may seem like sacrifices to anyone on the outside, this just called plain old parenting a child. And, no parent is ever perfect, I am not perfect. At the end of the day, the week, the years, a lifetime... I have to know that I did everything possible, and sometimes even what was thought to be impossible for my children.

    All the best,