those of us who have struggled with anything chronic will tell you that for us, it is always there, always on our minds and eating at our bodies and never gives us a break. yet, for others looking from the outside in, there is a perception of "out of sight; out of mind." Many friendships have been ended with this dichotomy and many family units strained. People become tired of hearing how much it hurts, how tired you are, how difficult your life has become and the pervasive trend in feeling is that you should "just get over it!"
While I have experienced both sides of the coin, the greatest eye opener of this phenomenon came when Connor was still quite young.
As you can imagine, and as I have frequently described, raising a child with a disability is consuming. it literally eats up all of your life: your energy, your strength and your time. you must be ever vigilant to protect yourself, you other children, your spouse and your family from the ravages that it reeks upon the family unit and the parents life. You learn early in your child's life who is real, who will support you and who will make life worse. Most of the time, we would pick and choose which events were worth attending and make the powerful effort and sacrifice that it took to partake in them. Few people realised how much military precision planning would go into a simple outing with Connor. when he was small, the issues were small; but as he grew, so did the difficulties in attending functions, family vacations and other events.
As I have also mentioned, I believe that open honest communication is a great lie and only ever works on the people who have taken and embraced the course. My experience with the "get over mentality" is a good example of why I began to think that.
When the challenges of attending family events became too great for me, mentally, physically and psychologically, I frequently tried to express it to friends and family. Some were great; others were absolutely appalling. I believe that this is something that I am not alone in either. I have had many friends and family with various ailments and all have been met with the same push back resistance. it is as if you are allowed a specific time frame for struggling and mourning any problem that you have and then move back into step with the rest of the human race. the difficulty with this logic is thus: the problem, whatever it is, still exists and has not moved on from the persons life and there are some things that never will; CP is one of them.
One particular incident stands out in my recollection of Connors upbringing. In fact, it became the catch phrase of our family life whenever things had gotten so difficult that one of us felt close to breaking down and throwing in the towel, the sheer ludicrously of this event would bring a smile to us and giggle our way through.
It was, of course, a Christmas dinner with one of our families. Christmas at its best is stressful. 4 Christmas' because both of your parents are divorced and not one will get their acts together enough to share is depressing. 4 Christmas' in 60 hours in a city 45minutes to one hour away, while working shift work is exhausting. Participating in all 4 of those Christmas' with a child in an electric wheelchair is nearly impossible, especially when one of the events involves an outdoor hockey tournament on a pond. Apparently, no one was aware that there were no ice skates invented for wheelchairs yet. (would not have mattered if there were since Connor cannot hold a stick either).
Feeling quite at the end of my rope that year, I tried to explain to Max's then pseudo-Stepmother, that given the conditions we were living with, it would be, quite simply too difficult to come to their house for a Christmas and I wanted to pass that year. I tried to explain, that now that my nieces and nephews were all walking and talking, doing all the "normal" things that kids do, to be around them with Connor and have the glaring differences poignantly pointed out was more than I could cope with at present.
the next 3 minutes were the most eye-opening, painful, comical and somewhat farcical of my life. Her answer to this open, honest, outpouring of my heart? "Linda, Connor is a beautiful child and all you ever talk about is that he has CP and that he is in a wheelchair. It is all that you ever say and it is really no big deal! you need to just get over it."
NO BIG DEAL!!!! JUST GET OVER IT!!!!! it is at moments like that you realise someone either gets it or they don't and all the oxygen you have ever spent talking with them has been completely wasted.
I politely said that I had to go and for the record I went to that Christmas with a smile plastered on my face and got through it. Also from that day, if ever we found life was getting to us, we would simply say "its no big deal" and giggle. After all, if raising a child with a disability, another child, working full time nights and volunteering for other projects is not a big deal, I defy someone to find me something that was.
Perhaps, raising Connor was the only thing that I was talking about, but it was also the single most consuming aspect of our lives. EVERYTHING we did, depended on raising him so that he could be successful. we had seen the alternatives and they were not options. So we ate when he needed to eat, we slept when he slept, we arranged our outings around his bodily functions, our diet around his needs and our home was decorated in early orthopaedic. was it difficult, sure. was it tiring, you bet! was it worth it? absolutely, I would never change a minute of it. but more than anything, it was a BIG F__NING deal!!!! and it NEVER ever went away. it was never out of sight, so it was never out of mind.
It is easy to become tired with people same old complaints about their same old stories and problems. however, if you want to be a true friend, try to remember that for them, it is not an old problem; it is an ever present monkey on their backs that is new and refreshed every day with its own problems and challenges. for some, like us, it makes you a stronger, better, kinder and happier person. for others, it wears you out so much and so low that it puts you into a pit that you may never be able to crawl out of. Whatever the outcome, try to understand, that no matter times you have heard it or talked about it, or read about it, it still is and always will be, a big deal.
