#5

kelsiesnowwrites
7FCA53F8-CB46-4E60-8411-1EEF64E846F2

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.

###

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

kelsiesnowwrites

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.

###

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

#3

kelsiesnowwrites

My social media feeds are full of people wishing farewell to 2019.

So many of the people I know found the last year hard, and I’m no different — 2019 was certainly the hardest year of my life so far. I definitely used to be one to say good riddance to a year that seemed filled with more heartache than joy.

But I’m not here for that anymore. Because no matter how hard the last twelve months were, I still got to live them and, for better or worse, they taught me a lot.

In the last year I learned I am stronger than I ever could have imagined. I learned that life really does go on. No matter your tragedy, no matter your grief, you still have to take out the trash and comb your daughter’s hair and get your oil changed and make dinner and unload the dishwasher and fold the laundry.

And sometimes, when you feel like you can’t take another breath, those little things are everything. Because they mean you are putting one foot in front of the other, that you are moving and living in spite of it all. 

I learned that kids will make you laugh and help you feel love and joy even when it feels as though your heart’s been ripped from your chest. I learned they will take the biggest, hardest news and trust what you are saying about it. That if they really believe you think it will all be ok, they will think so, too.

I learned how much I love my husband. I learned that by picturing my life without him, by having to really think about what my existence would be without him in it. Those thoughts are so painful they make it so I can’t breathe, and I learned I have to live with them.

I learned what one day at a time means. What being present means. How to focus on this moment right here, right now because the next one is not guaranteed.

And I learned to have a new appreciation for the fact that, even before this, forever was not mine. That it doesn’t belong to any of us. And some days that knowledge brings me a small bit of peace.

I learned the universe can be cruel and can make you question everything.

I mean, I had a stroke at 35 and my husband was diagnosed with ALS at 37. I’ve spent some time shaking my figurative fist at god and wondering what I did in some past life to deserve all this in this one.

But I learned that the universe can also be beautiful in tragedy, that it will let you know you still matter, that you have a place and that there are people — whether those who are still here or those who have gone — who are looking out for you.

Like when we realized the company running Chris’ clinical trial is headquartered literally next door to his first apartment in Boston. Or when we had to go to the emergency room in Concord, N.H., while on our summer vacation because Chris had spent four days flat on his back with a lumbar headache from the spinal tap he gets in the trial. Our ER doctor came in and asked us what was wrong. We explained about the trial and that we lived in Canada. She told us she was from Calgary. And that she grew up in the neighborhood next to ours. And that she went to the middle school directly behind our house.

And because of all that, I learned I don’t believe in coincidences.

Every Christmas I make my kids photo books from their last year of life. They go month by month, and looking through all the photos this year was hard. In pictures from the month we found out about Chris’ diagnosis you can see in our eyes how desperately sad we were, but even with those heavy, tired, bloodshot eyes, we are smiling. We are riding bikes through Stanley Park in Vancouver and eating ice cream and playing at the playground and swimming and watching our son play baseball.

And so even after my hardest, most tear-filled year of life I can see all the good in these last twelve months. I can see how I learned and how I grew. I can see how I grieved and how I loved and, most of all, I can see how I lived.

###

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

kelsiesnowwrites
IMG_1198

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.

###

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

#1

kelsiesnowwrites
20191215_flames_family_skate_fla775767bk

The Snow family, December 2019

By Kelsie Snow

I used to tell stories for a living, but telling your own story is different. It’s scary and it’s hard and it exposes you. 

And that’s why it’s important. 

People aren’t good at grief, and that’s because we don’t share it. We hide it away and expect those living through it to do the same. 

My family is grieving. And we are also joyful. We are scared and we are hopeful. We laugh and then we cry. All of these emotions exist together. Sometimes they overlap. Sometimes we know we are doing it right. Sometimes we are barely holding on. 

This is our story. And here’s where I tell it. 

Here is where I try to find a way to explain what happens when you are 35 and a doctor tells you your husband is dying. How you feel your stomach heave and you grab a trash can in the tiny little room with not a single thing on the white walls, just a sad little desk where the EMG technician whose name you don’t even know sits and tells you your life, as you know it, is over. 

About how your husband once held up his phone with the calculator open and the number 16,425 on the screen. How, with tears in his beautiful blue eyes, he told you, “If you live until you’re 80, this is how many days you’ll be without me. Promise me you will LIVE.”

This is where I tell you, or at least I try, how that guts you. 

This is where I tell you that when a doctor says your husband has a year to live, you stop eating, you can’t be around your kids because you can’t stop crying, you jerk from sleep remembering that wakefulness is where the real nightmare lies, you start taking Ativan and you have rolling panic attacks. About how you can’t stop staring at your 8-year-old’s huge smile because you wonder if — when all this is over, when he’s lost his daddy — he will ever smile like that again? How you fill your Amazon cart with a safe and external hard drives and buy more iCloud space to be sure you never lose a single video or photo because you realize your 5-year-old will need them to stitch together her memories of her father. 

And this is where I tell you what happens when, after all that sadness and hopelessness has left you completely hollowed out, someone tells you that, actually, all hope is not lost.

What happens then — when you go from no hope to real, true hope — is you feel high. You feel everything. You feel like you’ll never stop appreciating every single breath you take. You feel like life is brand new. And you feel desperate — utterly desperate — to hold onto that hope, completely terrified of someone taking it away or diminishing it even a little. 

Because hope, it turns out, is everything. 

And maybe that seems like an obvious thing to say, but I would wager that until you have been truly without hope, you can’t really understand it. 

Hope is everything. 

Here is where I tell you that we were hopeless but not anymore. Here’s where I tell you that Chris has a chance. That he has ALS and he has a chance, and isn’t that sentence a miracle already?

Here’s where I tell you that we believe he’s sticking around. 

Here is where I tell our story. 

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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

To love my body, it had to fail me.

kelsiesnowwrites

Me, in July 2018, waiting for an MRI to check the healing in my brain.

This week I was skating with my family, racing my 4-year-old up and down the rink as she giggled and squealed. I watched her wobble and right herself and push forward to win. I followed behind her, skating the length of the ice on one foot going one direction, the other coming back. I’m not a great skater, but I did it with ease, and in that moment I was struck by such a deep thankfulness for what I was doing.

I’ve had two babies, suffered through tough pregnancies and been lucky to have straightforward deliveries. I didn’t have so much as Tylenol in my system giving birth. I had my daughter at home in the bathtub. After having them I felt powerful and capable of anything. But that power was about me. It was about what I could do. I was proud of myself, and with that, I now see, arrogant about what I thought I had somehow controlled.

My stroke was the first time in my life my body failed me. It was the most humbling physical experience I’ve had, and it opened my eyes to my body in a way that childbirth never did. Suddenly, I couldn’t lie on my side without feeling certain I was falling out of bed. Once that improved, the neurologist asked me to sit up. I tried and fell sideways. When I could sit, he asked me stand. I toppled into the arms of the residents around my bedside. I had no control. And I was humbled in a way that shattered how I think and feel about my physical self.

Now, I am just profoundly grateful for my body, how it healed and what it’s capable of. And I’m struck at how it had to be broken before I could appreciate it, before I could understand how amazing it is. Now, I appreciate that while my body is mine, it is also its own. Now, I look at my body — every sore muscle and aching joint — with respect, reverence and, most of all, gratitude.

Growing and birthing and feeding two humans was not enough for this realization. For me, those were successes. Hard things, but successes nonetheless. It took my body failing for me to love it, to be gentle to it, to look at it with grace and kindness.

Today, nine months since my stroke, I am recovered. The residual symptoms I deal with are minor and do not impact my quality of life. I get dizzy more easily, but even that I find is a welcome reminder of how much I can do and how far I have come.

So when I am playing catch with my son and look up too fast and find myself dizzy, or when I’m dancing with my daughter and spin her in a circle and am left holding the counter to steady myself, I say a quick thank you to the body that grew two humans and had a stroke and didn’t give up. To one that is sturdy and strong and capable and that I can rely on every day to get me where I need to go.

My whole life I’ve been terrified to fail. I’ve minimized risk and followed the rules and colored inside the lines. I’ve made good choices and been responsible. Still, I know it’s true that failure is the only way we learn and grow. What I didn’t know until I had my stroke is that failure is a gift.

When my body failed me I learned to love it for the first time, and I learned how to be truly grateful for every single thing it does every single day. And I know this lesson was worth all the pain it took to learn.

Joy & Grief

kelsiesnowwrites

My husband and son, celebrating a goal.

I haven’t known what to write in a long time. I’ve started things and stopped, saved drafts and deleted them. I thought I was stuck. I now realize I was overwhelmed.

This year has been hard. For me, for my family, for so many of my friends. All around me, there’s been sadness — death and divorce, illness and pain, strokes and cancer. Horrible things happening to good people.

Just a few months after my stroke in March, my father-in-law told us he had ALS. He passed away in August. This disease has now killed four of six men in my husband’s family in just two generations. My father-in-law and both of his brothers and one of their sons, who was only 28 when he died. When I think about this, about the very real possibility of losing my husband to this disease, I cannot breathe. I cannot find a way to get air into my lungs.

And now, at 37 and 35 years old, my husband and his sister have lost both of their parents. Their father this year and their mother in 2012. I cannot fathom their grief.

The list of sadnesses and tragedies among my small village of people seems endless. I am tired, and I am too realistic to believe that something magical will happen and these things will cease in 2019.

Life is heartbreaking. The weight of loving people with your whole self often feels crushing. Because you treasure them, and in a blink they could be gone. Our kids, our partners, our friends, our family.

But life is also so beautiful and so complex. And what I know now is that all the pain makes you love harder. It makes the colours richer and the sun brighter and getting up at 5:40 in the morning to go to the gym feel like the most amazing gift because you can — your body can do it, and it feels like a miracle to be strong and capable and healthy.

And I realize, now, that I’ve been drowning these last months in what the brilliant Brené Brown calls foreboding joy — the constant fear and panic rising in your throat, telling you that all the good things in your life are going to be snatched away any second. And you are filled with so much anxiety about losing your joy that you can’t experience it.

Foreboding joy is hard to fend off. It’s why I couldn’t write. And why during this holiday season as I watched my gleeful, beautiful, healthy children bask in the magic and wonder of Christmas, I had to fight back that fear, that overwhelming urge to grab them and hold them and never let them go because I’m terrified of losing them. It’s why I struggled to be present. It’s why I cried. It’s why I pushed my husband away instead of telling him how I actually feel — that I am terrified he will die.

And then yesterday I was at the gym, where I had retreated after I’d gotten upset with my husband about something and found myself incapable of enjoying my kids’ squeals and giggles as they played games with each other on the living room rug. And I was running at 9 miles per hour on the treadmill. And my legs — legs that needed a walker and a cane in March — didn’t buckle.

And I felt so grateful. Not scared. Not worried. Not anxious. Just grateful.

And then I thought about how my little girl curls up against me in bed, one of her legs thrown over my back, about her face when I bounced her up and down on the seesaw at the playground the day before after watching my son toss his hockey stick down in the middle of the ice and join a pick up game at the neighbourhood rink, about him high-fiving his dad after he scored a goal, about how the sun hit the ice and the air filled my lungs and the breeze felt on my face as I stood there and watched.

About how I felt alive and at peace, even in the midst of all the sadness that sometimes feels capable of swallowing me whole.

When I was a teenager I read the Bible voraciously. I highlighted verses and stories and psalms and proverbs, I studied and wrote in the margins. But no matter how much I read my favorite verse was always the same.

“Even in laughter the heart may ache and joy may end in grief.” Proverbs 14:13

When I first read that verse at 14 years old, I had never known grief. But somehow I did know that proverb spoke to life on a bigger scale than I understood then.

I know foreboding joy will always be there, lurking. I know it will rise up, and I will feel overwhelmed again by all the things I have to lose. But my resolution for this next year is to keep fighting it off, to never give up, to hold close to my heart all the love in and around me, because, really, the beautiful thing here is how much of that there is.

I’ll choose to accept love and to give love and to be present, to be grateful for sore muscles and tiny humans who need an extra snuggle at night and a husband who thinks I’m capable of anything no matter the growing blank space on my resumé and a house that’s warm and a country that is safe.

I don’t read the bible anymore, but these last weeks I have found myself reciting that verse over and over in my head, most especially when I was going through photos for our family Christmas card. And so I’ll end this the same way I did that card — in 2019, may we all have enough laughter and joy to sustain us during the heartache and grief.

Happy New Year.