Even before Maclain, I was always one to root for the underdog. I would pick the team with the least favourable odds in the Superbowl.
I have always been the one to speak my mind in front of tons of people, and say what everyone was thinking, but didn’t want to say outloud. It usually got me into trouble at school, or work, but I still did it. I would become passionate about changing the system, opening people’s eyes, questioning the rules, and not settling for something because it had always been done that way.
But when Maclain came along I was thrust into a system that was riddled with flaws. Everywhere I turned there was something that didn’t work right, meet our needs, or provide the proper support. I couldn’t find resources, or get answers for what we needed to help navigate our new life. The problem also was that the deeper I dug, the worse it got, and the more I saw that needed to be changed. It reminded me of the little boy who put his finger in the dyke. Cover one crack, and another one starts. To be honest, all of these cracks caused me way more anxiety and stress than Maclain’s actual diagnosis. There was and still is so much that needs to be changed or altered but where do I start? I know that little things can make a world of change, but when you have a list of a thousand little things, it can become overwhelming. I often tell people if they want to do something simple and have an impact on the special needs community that they live in, they should call and ask for a special needs swing for their local park. It normally takes one phone call or email, and 2 weeks later it is installed. This little addition to the park now makes that environment inclusive and gives those families with kids with physical disabilities can have another place to visit and participate in. The impact is far reaching. My problem is that when I turn that advice on myself, all I can see is the next park, and the next park and so on, and I get lost thinking about all the swings that have yet to be put in. Suddenly I want to start a full fledged campaign to get a swing put in every park that doesn’t have one. And then I want to change the requirements so that no park is every built without one, and then do you see why I get so stressed? I can’t just eat one chip, or one cookie. Same thing with trying to change the world.
When I feel overwhelmed by all of the things that need to be modified or adapted, or completely overhauled so that they can adequately meet Maclain’s needs, I get the motivation I need from knowing that if I do something, other families and children may benefit. It just helps me to think that my fight will not be in vain. The problem with that though, is that I feel so much pressure to make things happen quickly, which is not the way things actually happen. And then I get even more upset because of the obstacles in my way. There is great satisfaction in changing a process or policy, but for me the moment is fleeting, because there are still 999 more things on my list that I want to change. It is the never ending story.
I often think that my brash attitude, and overbearing personality have served me well given the challenges I face. I know what they say about bees and honey, but I don’t normally take the sweet route to get things done. In my experience, being nice usually only get my demands dismissed. I also get so extremely frustrated when parents keep having the same fight over and over and over. And what makes it harder is when I talk with families who don’t know how to fight for what they need. I immediately want to take their battles and charge up the hill with them. It by no means makes me think I am any kind of martyr or superhero, because I certainly am not. Its just hard sometimes for me to know of a problem a parent is having, and ignore it. I automatically get out my list, and add to it.
If only our prime minister, party leaders, school board trustees, hospital CEO’s, and many more were to have a child with a disability. Then maybe things would be easier. I just always find it incredible that not one single day in the last 5 and a half years has gone by without either myself or another parent having an issue with the way things are for our kids. It often brings me to tears thinking about how much we have to fight and claw and beg. And quite frequently I feel defeated because I want to change so many things. Where do you start, and better yet, where do you draw the line?
What is it they say about eating an elephant? A bite a time? But I ask you this? If the elephant was trying to crush your child, and wreck your house, wouldn’t you want to find a quicker way to devour it? And then immediately put something in place so that it doesnt happen to someone else? How many times can we all eat the same elephant?