My Folks
They say a parent’s work is never done. Although this is true in an emotional sense for all parents, this encompasses everything when the child in question has a disability. I feel my challenges have had quite an impact on my folks lives and our relationship. Also, living in a nursing home has made the fact that my parents are getting older very real to me. So I have decided to write down my thoughts and fears in a series I call “Dear Fears” in an effort to organize and face them. Besides this I have two side goals for the series:
1. It’s been said that I’m not a very self-reflective person; This is very true. I’ve tried writing a diary but without some sort of reason to keep going I just stop. With this kind of format, not only do I have a deadline (every 2 weeks) but there will be people who’ll be expecting to read it. They may be confused if it’s not there.
2. I know I can’t be the only person with these fears. Hopefully if I write these down I can help someone else and get a discussion going.
I guess that explains everything. Here goes nothing…
Family vacation?
My parents have done a great job making me feel the least disabled possible. Most of the time this is to my benefit. I don’t use my disability as an excuse not to do things. Well most of time. Nobody’s perfect right? Occasionally, however, this can make me feel incredibly naive.
Let me give you the latest instance in which this became painfully clear. When I was first told we were going to London I knew we were going there because of my fascination with British history, culture and people with their super-sexy accents! I knew that for the most part I could make a suggestion about what to do and they’d take me even if they’d rather stick needles in their eyes. They are the best parents ever. (They did that too: M&M’s World.) But I thought they would at least get a little bit of a vacation too. I seem to have forgotten that taking care of a person with severe spastic quadruple palsy is quite labor intensive. Of course they couldn’t relax they were once again, however briefly, on round-the-clock caregiver duty. Hell, with all the extra mishaps, and my inability to drive when my brain gets over stimulated, I was even more work than normal. Fabulous.
It’s been a while since I felt that angry about my disabilities. On our first night there my catheter leaked, causing this 23-year-old advocate and published author to wet the bed. I was furious. Not at anything that had just occurred, Not even about peeing the bed. Catheters sometimes have trouble draining and it has to go somewhere. I was mad that it had happened at a time when the clean up would fall to my parents. No one wants to start their day like that but at least if it happens in my care home people get paid to do it. I’m not a religious person in the slightest but in that moment I closed my eyes and asked the universe for my body to work for 20 minutes. That way I could clean myself up instead of them having to do it. It was pointless, I knew that, but I felt the need to ask anyway.
Super Daddy
I swear there’s a point to my little sob story. My parents were fantastic. They never once complained about my constant need for care or the toll it took on them. I could tell it was harder for them then it had been even two years ago. I mean this makes perfect sense. I’m finally a healthy weight after a 4-year battle with my own mind. My Dad is 51 years old, which is not that old in the grand scheme of things. however my care requires a lot of turning, lifting, etc.. I call it man handling and I could tell it was harder than it once was.
Right now he is still able to do everything. My concern is that when he can no longer able he won’t tell anyone and I’ll end up hurting him. You see my dad’s a doer; He sees something that needs to be done and just does it, quite often refusing help. As much as I admire this about him and try to practice it in my own life, when it comes to my care this scares me. Not because I might get hurt, he would never let that happen but I do believe it will take an injury for him to admit he can’t do it by himself. After all, what father would want to admit he needs help caring for his daughter? I’m not as concerned about this when it comes to my mother because she has accepted it’s ok to ask for help.
I hope this series of inner ramblings helps you as much it’s going to help me. Cheers,
Victoria
Independence Now Nova Scotia (INNS) 
I appreciate this post, and really admire you for facing fears (and yes, for being more self-reflective). I won’t lie and say it wasn’t work, but it was as they say a labour or love. We’d do it again in a heartbeat, daughter of mine. We did, though, also find time to relax and enjoy it all, don’t worry about that.
And here’s the thing you have taught us both – if there is something we can’t do, we find a way to solve it. There will always be a way to approach these issues – if we can’t do it, we’ll hire someone to help, right? or we’ll go somewhere slightly more accessible. I wish the world was geared toward universal design, but in the meantime we will always be able to make it fit. I promise.
xo