The End of Hope

Last week we had a physiotherapist come to our house from the CCAC. Our Occupational Therapist thought it would be a good idea to add physiotherapy because Piper is not making very good progress at this time. Honestly she just turned 9 months old and she still can’t really hold her head up and she definitely can’t do much else. So in addition to the Osteopath, MEDEK physiotherapist and Occupational therapist we’ve added this government funded Physiotherapist.

The girl who came was very friendly and showed me an exercise that I should be doing with Piper. Compared to the MEDEK Physiotherapy it’s very passive. I place Piper sitting on my lap leaning against my stomach and move from side to side. It’s very simple but I really don’t see the immediate benefits.

What was disturbing about the visit was the conversation we had during it. She asked me if I’d filled out some papers to get funding under the “Children With Severe Disabilities” act. I had the papers but never filled them out because a) its 20 pages long and is very labour intensive b) it’s income dependent and I’m not thinking that we would fall into the range to get the funding and c) I haven’t categorized Piper as having a SEVERE disability.

I asked her why I would need this and she explained that Piper should have a different stroller. I told her that Pipers stroller was fine and she said the stroller may help her until she needs a stander. A stander? What the heck is that? She wrote down the name of the stroller and I said I would look at it.

Once she left I looked up the stroller and it looks like a wheelchair. I lost it. Getting a special stroller for Piper will just acknowledge the fact that there is something wrong with my child. It will make people look at her more than they already do. Why would I do that to her, to me? I looked up a stander and then cried. I put a picture of it on the page so you can see the stroller and the contraption called a stander. Is this what Pipers life will be like? Would she ever walk? Will she be 20 and me still having to carry her around? The not knowing is killing me. It makes me want to pull out my hair in frustration!!!

I asked the pediatrician last week about the stroller and the stander and whether she thought that she needed them. Her answer was that she doesn’t know what Piper will need, nobody does. If I don’t feel that she needs the stroller then I don’t have to get it, but I may need to cross that bridge when I get there.

When Piper was 2 weeks old I thought “she’ll be better by 3 months”. When she was 3 months I thought “she’ll be better by 5 months. When Piper turned 5 months old the only thing that kept me going was the thought that by 9 months she would be holding her head up. When the milestones all came and she still couldn’t hold her head up I lost faith. I am at the end of my leash when it comes to hope. I don’t know if I can do it anymore. I have spent the last 9 months hoping and working and worrying for this precious child. What am I supposed to do? This is something that consumes me 24/7. This isn’t something that will get better with time or go away for a few minutes. Where do I go from here? How can I go back to work in a few months with a child who I worry about all the time? Things and priorities are different. I can hardly function at home, what about at the office?

We have a neurology appointment on August 2nd. Although I wait with bated breath for the visit I know in my heart that there will be no answers on August 2nd. This will not end for our family. We will never know what Piper will be like or what to expect from day to day. That false acceptance is laden with a small amount of hope that remains when every 23rd of the month arrives. As it arrives the hope gets smaller and smaller. What happens when there is no hope left?