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Finding purpose after loss

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. 


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Time is not the same when you are grieving. It's like it doesn't even exist. Everyday feels like it was just yesterday we said goodbye. I have lost track of any linear timeframe of events and couldn't tell you what happened a month ago. Time does matter because time to me is only a painful reminder of how long I have lived without and likely have to live before I see my sweet boy again.

I honestly don't know how I have made it this far. To imagine I could endure so much pain for half a year and still survive is a testament to our God and his presence in my life. Without his strength helping me make it through each day, I would not still be here. I am tired of feeling so much pain.

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My focus and clarity gone
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We had a great few days this week last year and he was full of laughs, full of life! We saw a glimpse of this again in ICU. Then he deteriorated. 

The zipper that keeps us all inside Earth started to split. His connection to this plane was ripping apart. When the zipper fully detached he was opened to eternity.

This week has been challenging, constantly fighting back memories of this time last year. Painful memories of life and death decisions. Time is nothing. It hurts just as bad now as it did last year. My grief had been contained, but is now wide open. 


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