I rode the roller coast for years and now it's a maze.
Finding my way after losing Xavier has been a series of dead ends, wrong turns and the occasional straight path to nowhere. I must be doing grief wrong. "They" say not to make any big life changing decisions within a year after losing a loved one. I have made several.
First, we moved a month after his death. Had we known (or accepted) he was palliative, we never would have sold so quickly. I also quit my new job during that first month, knowing I would not be returning for some time and ineligible for any extended leaves of absence. Then here we are just over a year later and the cycle continues. We moved -- back to where we came from -- and I quit my new job at Brain Tumour Foundation of Canada.
There are so many amazing people behind this cause working hard every day in their labs, at the foundation, in hospitals and government offices trying to improve treatments and maybe find a cure someday. Don’t get me wrong, their efforts are not in vain. There will be breakthroughs and each year there will be improvements. Just look at leukaemia and Terry Fox’s cancer. It’s possible! But this fight is not for me -- at least not right now as perhaps it was too soon. My purpose is something else.
I feel indebted to the brain tumour community, or it’s just expected this cause is my obvious path given our journey with Xavier. And at first I thought this was a great fit. But my heart is telling me something different. For one, my heart leans more to kids for obvious reasons, but also to grieving parents and anyone facing adversity whether it’s brain tumours or not. That’s what I loved about Inspire... I talked to resilient people with different stories of strength and adversity. To me, no illness deserves more of my attention than another. A life is a life! It’s the person beyond the illness who I find incredibly inspiring.
Which is why I don’t want to remember Xavier for his brain tumour. I am not giving it more power than it should. I need a break from the brain barrage which has been my life for almost a decade.
That said, I don’t know what my purpose is. I just know what it’s not. I listen to my heart. Someday I hope to figure it out... whether it’s raising more awareness specifically for children with terminal brain cancer or supporting others in their grief after losing a child or celebrating the resilience of anyone who travelled through dark tunnels to find the sun at the end.
I have promised myself not to resist what is, and to accept life and death as it is presented. It is a part of our human life. Do I think our children deserve a better and longer life yes!!! It’s not fair. And it's hard!
There is this internal expectation that I do something to ensure my child didn’t die in vain. This brings me incredible guilt. If I don’t work for BTFC or start a fund or create something amazing in honour of him, does that mean he died in vain?
Steve Northey started the brain tumour foundation in honour of his daughter, Susan has dedicated her life as CEO there in remembrance of her son, Nicole had a movie inspired by Evan and a trip to Calcutta. Others have written books, started charities like Jacobs Story or annual fundraisers like the ring toss for childhood cancer.
Here we are over a year later without my amazing boy, and I have no idea what to do! Is the memorial bench at his school and Star Wars day at the hospital enough... of course not because Xavier’s life is priceless and meant so much more. I need to do something BIG to show, to prove his life was important. So, I put this pressure on myself to think of something better, something more... when all I really should be doing is appreciating what I have and had.
We all want to know our purpose after a tragedy like this because if there isn’t one than it’s just cruel. And I don’t want to believe that. I don’t want to think my son died for nothing -- that there is no greater purpose to his dying in this world.
Am I not honouring him enough or remembering him enough through my actions? I am so lost in this part of my grief journey.
I am so busy thinking about what would make sense or how I can build something to know his death was not in vain. The guilt eats at me that I don’t know what that is... the why ultimately. And again I feel I am failing him, because I cannot explain the greater good to come from his death right now. It's times likes these when I really need to rely on my faith and pray for patience.