#5

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Family Skate at the Heritage Classic. Mosaic Stadium, Regina, Sask., Oct. 2019.

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.

Mostly.

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 past 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 want 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.

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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

https://sprtsnt.ca/3aaarKI

To learn more about our story go to: https://www.nhl.com/flames/news/dear-hockey-family/c- 312763286

#4

Chris in the main atrium of Sunnybrook Health Sciences Centre in June 2019 (left) and today (right).

I remember being in the car, coming here for the first time in June last year. We were waiting to turn left into the hospital entrance and I saw the billboard:

“Where Impossible Becomes I’m Possible.”

I pointed it out to Chris. He squeezed my hand. All our hope was here, and we were both scared and hopeful as hell.

That was almost seven months ago. The photo on the left was that day. The photo on the right was today.

Every time we are here Chris answers the same set of questions about his health. And for all nine visits his answers have been the same — no change.

No change.

Every time he says it my stomach flips. My husband, who has an aggressive form of ALS, one that carries with it a 6-18 month life expectancy, has had no change to his health for nearly seven months.

That’s the dream.

Every morning when I’m tying Chris’ shoes, I ask if he feels the same today as he did yesterday. And every day that he says yes, I tell him we’re living the dream.

Way back in the summer, today’s visit was the one we were aiming for — Chris’ final dosing in the trial.

What that really means is that it’s the last possible month Chris could be getting the placebo and not the actual drug. Next month we come back, same as always, but from then on, everyone knows that the little syringe in the ziploc bag is 100% filled with medicine rather than saline.

Based on Chris’ aggressive mutation and lack of apparent progression since he started in the trial, we personally believe he’s been on the drug this entire time. But that’s just our conjecture.

Every patient in this quadruple blind study has a 2-in-3 chance of being on the actual drug and a 1-in-3 chance of being on the placebo.

Back in June, knowing Chris could get the placebo caused daily panic attacks. The idea of not getting the only drug out there that could save his life was often debilitating and consumed so much of our thinking.

Like every morning when Chris took a shower. There were three shampoo bottles on the shelf — two were beige, one purple. He would stand there under the water and just stare at them.

They reminded him, he said, of his odds.

Beige bottle you have a chance of stopping this disease in its tracks. Purple you keep wasting away for six months until your participation in the trial is over and you get the drug in what is called “open label,” which is what every patient in the trial goes into after they are done with their trial doses. It’s the part where you know, with certainty, that you’re getting the good stuff.

Early on I tried so hard to lean into the hope of the drug and fought so hard to not fixate on the chance of placebo. I remember once, at a friend’s house, being able to calmly tell her everything we knew about the drug, explaining how hopeful we were, and then crumbling when I mentioned the placebo.

I tried to tell her that all we had to do was wait six months. That if we could just wait that long, he would get the drug for sure. And then I fell apart.

“But in six months,” I said through sobs, “will he even want to stay?”

Turns out the answer to that question is an unequivocal yes. And we feel so confident he will be staying for a long, long time.

That’s because Chris is — and I hesitate to use this word because it seems almost foolish to say in conjunction with this disease — seemingly stable.

In the months we’ve been coming here, Chris’ weight has been the same. His breathing has been the same. Every part of his body, with the exception of his right hand and forearm, has been the same.

I don’t know what the future holds, but today we celebrate Chris being the same.

Today, we’re living the dream.

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To learn more about our story, go here: https://www.nhl.com/flames/news/dear-hockey-family/c-312763286

To donate to ALS research in Chris’ name, follow this link: http://uom.convio.net/goto/chrissnow

#2

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Chris playing shinny, December 2019

This Christmas I cried three times, and that felt like a pretty big win.

The first time was when I opened a card from Chris. I cried because he wrote in it.

I knew how much effort it took. He wrote in it left-handed, because he can no longer grip a pen with his right hand. He can’t do anything right-handed, which was his dominant hand until earlier this year when suddenly it got harder and harder for him to squeeze my hand, to make a fist or to shake someone else’s hand, until one day it wouldn’t do anything at all.

Chris can’t write or type with his right hand. He can’t tie his shoes or his skates. He can’t cut his food. He can’t throw a baseball or grip a hockey stick. He can’t carry groceries in from the car or balance things in one hand while unlocking the door with the other.

There are a million things he can’t do with his right hand, but I can’t list them because he doesn’t talk about them.

Instead, what I see are things like this summer, when it got to the point where he could no longer throw right-handed and so he just started playing catch with his left, telling our lefty son, “I just want to be like you, buddy!”

What I hear are things like his response to our daughter on Christmas Day when we were getting ready to go skate. As I tied Chris’ shoes she said, “Daddy, I hope your hand gets better soon.” And he said, “Oh thanks peanut, but I don’t think it will ever get better. And that’s ok. I don’t need it.”

A year ago I thought I was grateful. I thought I understood what that word meant. I had no idea how my definition of gratitude would shift and change over the course of these last months as I’ve watched my husband face his mortality with courage and hope and a smile on his face.

Now, because of Chris, because of this disease, my gratitude is so elemental, which brings me back to that card on Christmas Day.

Chris is a better writer than I am, for sure. And he’s always written me the most beautiful cards. When he was diagnosed I remember spending hours one afternoon sitting on the floor of my closet, my shoulders shaking with sobs while I read through all the cards he’s given me in our 15 years together. I didn’t know if he’d ever write me another one. 

So when I saw his words on Christmas day, I walked out of the room so my kids wouldn’t wonder why tears were suddenly streaming down my cheeks.

The second time I cried was after watching him play shinny with the kids and a group of strangers at our neighborhood rink.

In the days after he was diagnosed and before we knew how hopeful doctors were about the clinical trial we are in now, I thought of all the things I would lose. I thought about his family history, how quickly his uncles and cousin and dad lost function and mobility and independence. I thought about his specific gene mutation, which carries with it a 6-18 month life expectancy.

My mind played out the months to come and my son’s hockey season hit me so hard. I thought about our local rinks. I tried to remember what they had for handicapped access. I expected, fully, that Chris would be watching our son’s hockey season from a wheelchair. I expected he would be dying.

But, more than six months after being diagnosed, he’s not.

Instead he’s playing shinny at outdoor rinks and coaching our son’s hockey team.

The Flames equipment manager sewed Chris’ right hockey glove into a fist, so Chris slides it around his stick and onto the ice he goes. He skates like he always has — smooth and easy and with a smile on his face, even if I will never, ever be able to tie his skates tight enough.

The place where he feels most whole, where he feels the healthiest, he says, is on the ice. Even before this, that was the case.

The third time I cried was when we all snuggled in on the couch to watch a movie after Christmas dinner. I looked over at my babies, each under one of Chris’ arms, and I felt so lucky. In that moment life felt perfect. This was all I ever wanted — the four of us together, in our home, with this life we’ve worked so hard to build. For a minute I felt so content and happy, my cup so full.

And then I remembered.

My mind slid into the abyss and all I could see is what I stand to lose. I thought of my life without him. I thought of my kids’ lives without him. My stomach dropped and fear replaced the joy. I spiralled into the unknown — will he be healthy next year, am I strong enough for this, will the kids be ok, who am I to deserve a miracle?

Some days the abyss sucks me in and I stay there, but in that moment I took a deep breath and reminded myself of what I have.

Right now, my fears are not my reality. And I have so much reason to believe they never will be. Right now my husband is here. He is defying the odds and he is strong and capable and smiling. He is already a miracle.

I looked at my three favorite people giggling at A Christmas Story, and I wanted to stop time, to freeze the four of us right here — together and healthy and smiling. But I couldn’t, so I wiped away my tears and did the next best thing I could think of.

I let myself feel happy.

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To learn more about our story, go here: https://www.nhl.com/flames/news/dear-hockey-family/c-312763286

To donate to ALS research in Chris’ name, follow this link: http://uom.convio.net/goto/chrissnow