This past week marked the third anniversary since we lost Jason. We feel the passage of time but also feel that time has stood still. It is hard to put into words what life is like living without our son. Jason brought challenges into our lives that we never thought we would face. Looking after someone who year by year and eventually month over month slowly lost their ability to physically function was painful and exhausting. In saying this though I find it more important to note that those same challenges brought our family closer and stronger. We learned an appreciation for what was important in life.
Jason taught us what it really is to face a challenge. He lived through losing his ability to walk, lift a spoon or even bathe and clothe himself, with grace. Grace is the only word that fits his demeanour. He decided that he “had resolve”. Resolve is one of those words that is easy to say but difficult to live and put into action. Most of us resolve to accomplish a goal; such as an exam, or a sporting event, university or even a selected career. Few of us choose to live a “life” of resolve. Most of us just plain don’t have to think that way.
Jason coped with Duchenne Muscular Dystrophy essentially by acting like it didn’t exist. We don’t mean that literally, just that it didn’t define him. He pushed forward.
Looking back on his strength now, we are in awe – at the time it was just life. We did whatever was needed because what other choice did we have? We helped however we could but the tough part was left to Jason. He had to live with losing his physical strength. He did have to make a choice. He chose to live in a way that demonstrated a depth of character that we cherish.
So how does our loss become a focus on inclusion? We could focus on so much connected to his disease. There are many charities that are close to our heart.
We took a look at what was missing from Jason’s life outside of the obvious disease. We wanted to focus on how to help someone cope with the overwhelming challenges that life can dole out. In Jason’s case it was friendship and socialization. Jason truly lacked friendship, in particular once his disease advanced. He stood out more and more as different from his peers and in essence spent most of his time by himself.
Jason once asked us if we would be his friends. He needed me as his mother to take away the pressure of asking him who he sat with in school or what did he do that day and who did he talk to? His answer was usually no one, and he didn’t want to say it. Jason wasn’t bullied, he was excluded. Invitations did not come his way. His shyness also did not help. It is for that pain that we now take on a small piece of his resolve.
As Jason’s family we admire, love and respect everything he brought to us in life. We move forward now in a way that tries to honour his resolve. Our resolve is inclusion – whether it is in a school, sport or anything one strives for in life. Educating other kids to just be a friend is one of the most important lessons we can share. Choosing to stand by someone who doesn’t necessarily have the same skills can be so much more rewarding then “winning” the game. That support and friendship on it’s own becomes the win.
For Jason, we have Resolve.