Tuesday, November 19, 2013

Cerebral Palsy parenting

I guess you never stop being the parent of a Cerebral Palsy child, no matter how old the "child" may be. Perhaps it has more to do with being a parent in general- and having a son or a daughter with special needs- only enhances it. And no matter how much time passes- you still feel the need to be there, you still want to help. This was one of the things I realized when I was back in Poland with my family. I moved away from home nine years ago. I haven't been back since 2007. I haven't seen my parents in a little over three years. I live by myself. I haven't had a roommate in ages. And I get by.  I don't have anyone helping me and I survive. And yet, when I got home it felt like my mom wanted to assist me with everything- when I stood up to transfer myself she'd attempt to grab me, often interfering and kind of getting in the way. Frequently checking if I didn't need anything and bringing me things I didn't ask for. My sister in law told me that they even were worried what would happen if I woke up in the middle of the night and I was hungry. She of course told them that I surely knew where the refrigerator was. The odd thing was my mother was never the overbearing type that wanted to do everything for me. I really don't remember that much attention growing up. But then, I thought- the must really miss me.  And this is how they express their love. They have not seen  me for the  longest time, who knows when they will see me again so they cram as much affection and as much attention into the short few weeks we have together as humanly possible. And I didn't fight it as much as I would normally when someone tries to rearrange my shirt or comb my hair. I figured, hey I'm not home enough, let's just enjoy each other's presence. Truth of the matter is, as much would want to my parents are not actively involved in my day to day life. I do God knows what with God knows who and they only hear bits and pieces of it  if I remember to Skype home once every two weeks. And often there's not a whole lot to talk about. Sometimes I get excited about a project or a job offer or a speaking opportunity that blows up the next week, so I don't even bring up the small things anymore. Over here I have plans. I have dreams, I have friends and plenty of stress, but then my parents are not versed if you will in my day to day activities anymore. And I'm happy that my parents have their own lives, jobs and grandchildren that they can give their time, focus and love. We are not very good at verbalizing our feelings, but my parents are very giving and loving people. Last month I was in Munich, speaking about my life with Conductive Education and Cerebral Palsy at the World Congress and I brought my parents along. There weren't many ways they can have an active presence in my life but they wanted to make sure I looked good and had one less thing to worry about. The three suits I sported on different days of the conference- that was all my mother's work. And then when I was sick- half passed out on my uncle's couch in Munich - my mother shared with me that whenever she sees a child in a wheelchair she wants to run up and help. That's how much she misses me. That's how much she misses that interaction. To me, that moment was heartbreaking- because if I wanted to, and I would never want to- I could never be that little kid she used to care for again. Time passes, we grow. Sometimes we grow apart. And it got my to think how this new life that I got here, my new lease on life as exciting as it is for me, took something from my parents- that I never thought about to a greater degree. I was happy to get started- they were letting go of something, and miss it.


  1. Nice piece, Ralph. Some years ago, I went round to see a friend of mine who was in his early 60s. We were planning to go out for a quick chat over a beer. He popped upstairs to get dressed and as he's coming down, his Mum, in her late 80s, looks up and says "You're not going out with Norman in *that* tie, surely." Without a word, he went back to his room and changed it! Mum's and sons eh?

  2. http://www.conductive-world.info/2013/11/the-other-side-of-independence.html