Chris is doing really well, the last few months especially. He feels positive and grateful. He smiles and laughs easily. As the entire country could see during Hockey Night in Canada After Hours, he is inspiring.
And when he feels positive I do, too.
Early on I was drowning in grief and sadness and fear. Now it comes in waves. Sometimes I can see it coming. Sometimes it hits me and suddenly I’m sobbing and then, like it came, it goes, and the sobs subside and I’m ok. All in a span of a minute or two.
I’m getting better at knowing when this will happen, but sometimes it’s just there and I’m not sure why and I can’t shake it.
Like when I wrote that post last week about how well Chris is doing. Every single thing that happened that day, every bit of feedback we got from doctors, was good. It was so good.
When I sent that side-by-side image of Chris at Sunnybrook in June and Chris there last week to a physician in Miami who I annoy basically daily with checkins and questions, she wrote me back to say, “I hope you guys know how incredible this is. Seven months is the average life expectancy of someone with (Chris’) mutation after onset of symptoms!”
Already a miracle. I know this. I’m so grateful for it, but on the way back to the hotel from the hospital that day, my anxiety flared up. The thoughts came rapid fire, “Will this drug really work? How well will it work? Are we fooling ourselves? Will he be the same next month as he was this month?”
I know those questions can’t really be answered. I know that in order to live with this new reality of ours I have to take one day at a time. I know that all the results up to this point are everything we hoped for. And I also know that when these questions start swirling in my mind, the only way to get past them is to let them be.
I’m beyond grateful that I feel like we can plan our upcoming summer feeling confident that Chris will be independent and able to do everything he wants. Last June we didn’t think that would be possible. We told our kids when we pulled them out of school to take them to the NHL Draft that we were going to have “a summer to last a lifetime.” Because we thought it would have to.
So I am incredibly grateful. I feel so lucky (and isn’t it crazy how your definition of luck can change?), but some days are still hard, and often the hardest ones are also the ones filled with the most joy.
Like back in October, when we went to the Heritage Classic in Regina.
The night before the outdoor game all the families got to go on the ice after the team practiced. It was a warm fall evening (though the next night was a freezing cold winter one) and my kids were so excited.
Here we were skating on this outdoor rink in a beautiful stadium. It was an incredible experience, one we were lucky to have, but as I watched the kids from behind the bench my chest tightened. My eyes started to fill with tears, and I was terrified I would start bawling in front of all these people who were having such a happy time. I was familiar with the sadness that suddenly overwhelmed me. What I hadn’t expected that night was the anger that came with it.
Chris was across from me, stopped on the ice. I caught his eye. He flashed the biggest smile (he has the greatest smile, one of the first things I loved about him). The lump in my throat rose higher. His happiness, his smile, only made me angrier.
All these people were around me, these healthy families with babies and toddlers, with bodies that moved and worked like they wanted them to — and I knew I was jealous of them. Of how carefree they were. Of how the future, for them, for so many people, is something they can assume is theirs to have.
I looked at my husband, his right hand strategically tucked into his pocket, still with a huge smile on his face, and in that moment rage and sadness filled me up so completely that I couldn’t breathe. The tears filling my eyes spilled down my cheeks.
I wanted the luxury of assuming the future was ours, of not having to fight off the constant worry that every experience together is now this huge marker — that it could be the last chance to make this kind of memory. That when my daughter had to use the washroom and I had to walk away I wasn’t missing one of my last chances to etch this in my mind, the picture of my husband happy and skating and grateful in spite of it all.
I blinked away the tears (I do that a lot now). I kissed my daughter on the cheek. I looked at my husband again. I watched him move on the ice. I swallowed the lump. I accepted that, for that night, I would rage internally at the universe for dealing Chris this hand. I would feel sad that this is now my family’s story. I would let it sit on my chest, like a cinder block, until it lifted.
Because I knew, eventually, it would lift. It would go away. And it would come again. That’s the nature of this. There is no end to this cycle. There is just accepting it.
Soon, maybe by the next morning, I would feel hopeful and happy again. I’d be grateful and content and brave. I’d feel strong enough to handle this. The wind would hit my face and my lungs would fill with air and I would feel peace and, even, joy.
But for that night, with life all around me, with happy, healthy families skating and posing for pictures and being together, all I felt was what I stood to lose — everything.
To donate to ALS research in Chris’ name, follow this link: www.calgaryflames.com/snowystrong
To watch us talk about our journey follow these links: https://sprtsnt.ca/2u3iyIf
To learn more about our story go to: https://www.nhl.com/flames/news/dear-hockey-family/c- 312763286