For so many months now I have updated you with two words that have meant everything to us — no change. Being able to say that for so long has truly been a dream.
But today I’m coming to you with a different message.
About a month ago I took a photo of Chris and our daughter when we were outside sledding, and I noticed his smile looked different. I mentioned this to him offhand, thinking it was just the photo.
Unfortunately it wasn’t.
Chris has experienced a slight droop on the right side of his smile. If you know him well and you’ve talked to him recently or if you talk to him in the coming days or weeks, you might notice it, too. Chris is a genuinely happy and positive person who loves to laugh and smiles easily, so a change in that smile can be hard to miss.
We have spent the last weeks sitting with this and trying to sort out what it means. The likely answer is that it is some slight progression of the disease. If so, it is the first progression he’s experienced anywhere in his body outside of where his symptoms first presented in his right hand and forearm more than one year ago. And that would make two things true.
The first truth is that people with Chris’ very aggressive form of ALS die, on average, 6-18 months after being diagnosed. That this is the only progression he’s seen 11 months since diagnosis is a true miracle. We know we have already been given the gift of time, and we are grateful for every single day.
The second truth is that, despite the miracle already working in Chris’ body, this has been a crushing development. As the weeks and months since Chris started the trial have moved along and his health remained so stable, we had started to let ourselves believe that maybe this drug would really be the magic bullet that would stop Chris’ ALS in its tracks, that he could live the rest of his life with no further losses to this disease, and so this has taken us back to where we were one year ago.
As Chris said to me, “It feels like I’m being diagnosed all over again.”
This is the reality of living with an illness like this.
The other reality, and one that we happily accept, is that Chris remains a walking science experiment. This change could be just a blip, a small bit of progression that will stop where it is now. After all, the most likely thing to happen after Chris’ hand and forearm atrophy, doctors tell us, would have been progression into his right shoulder, but that hasn’t happened. If anything, Chris believes his right shoulder is stronger today than months ago.
And that’s the thing — no one knows what this means, or if it means anything at all, in regard to his illness or how the drug is working in his body. What we do know is that we have doctors with decades invested in this field expressing to us genuine excitement that this medicine exists and that Chris is receiving it.
We also know, after navigating this last year, that there are two ways to live life. One is focusing on everything you have, right here and right now. The other is focusing on all you have to lose. It is easy to slip from the former to the latter, but we continue to remind ourselves to stay present and grateful and — above all else — hopeful.
Chris and I talked about whether to share this development and what we decided, really, is that we will not hide from ALS. We will walk straight at this with our shoulders back and our heads held high, with the words of love and support from so many of you propping us up.
I didn’t know Colby Cave. I don’t know his wife or his parents or any of the people who love him. But when I sat down at my kitchen table this morning, opened Twitter and saw that he passed away after suffering a brain bleed earlier this week tears filled my eyes.
At the other end of the table, Chris was doing a puzzle with our daughter. I told him. “No,” he said as he stopped what he was doing and sat there very still. Our 5-year-old looked at him.
“What’s wrong Daddy?”
“Oh I’m just feeling sad, lovey.”
She went back to her puzzle.
“It’s OK, Daddy. He’s in heaven now and nothing can hurt him.”
The tears trickling down my cheeks turned into a steady stream as I caught Chris’ gaze from across the table.
I saw in his eyes the same thing I know he could see in mine — the weight of grief, the heaviness of tragedy, the fear of loss and a depth that comes from constant proximity to profound sadness, the kind of sadness most people keep at bay until it rushes at them all at once and crashes hard into them, knocking them down, taking the wind from their lungs and leaving them shattered in its wake.
The kind of sadness Colby’s wife Emily is feeling now.
My tears today are for her. For the life she thought she was going to have. The babies she thought they’d welcome. The stages of life they’d go through, the old age they’d reach together.
Suddenly, she has to live the life I have grown used to picturing for myself for the last 10 months. I have spent so many days and nights wading into this sea of sadness, wondering when I’ll be tossed in without a say in the matter, now constantly hyper-aware of loss, of its injustice, of its impartiality, of how people manage to survive it, of how they somehow keep going. And my tears are because she’s been throw in, all at once, sinking in despair, drowning in heartache.
My tears are because today my husband is still sitting across from me. Because I laid my legs across his lap on the couch last night and hugged him when he handed me my coffee this morning. Because I am so grateful and because I feel so guilty. Who I am to get a miracle when Colby and Emily didn’t? When so many others right now aren’t?
My tears are because there is so much heartbreak. Because people are losing their loved ones without being able to hold their hands, without being able to say goodbye, without being there. Because the world feels like such a dark and scary place and, at the same time, here I am, in my warm house, playing games and watching movies and, yes, occasionally fighting, with my three favourite people in the world.
My tears are because it seems like now I constantly feel every emotion at once. I am sad and and I am happy. I am angry and I am grateful. I am worried and I feel peace.
Every single thing in my life since Chris’ diagnosis is just more than it was before. Every experience has more weight, every argument is more difficult, every cry is more cathartic, every laugh is more invigorating, every photograph is more precious.
In basketball if you get fouled too much in a game you’re rewarded with free throws. It’s called bonus, and maybe that’s what this is, right now, for us.
This time stuck in the house with my family is bonus. I wasn’t supposed to get it. The games of catch Chris plays with our kids, bonus. The dinners out in Toronto, when we went for his treatments, bonus. These days at home, these nights on the couch together, these hugs, these sunny afternoons on the porch, these snowy days in April, these tears, this laughter, these arguments, these good days and these bad ones — all bonus.
If you need a reason to keep hoping right now, watch this video of @ChrisSnowCGY taken today, almost 10 months after he was diagnosed with ALS and given 12 months to live. Cute 5-year-old added for emphasis. 💪🏻💪🏻 #SnowyStrongpic.twitter.com/FKUzGIwiqZ
I look at my husband’s right hand and forearm, wasted away by a disease that remains incurable, that has always been 100% fatal. I don’t know what it’s doing inside his body right now. I don’t know if it’s been shut off or if it’s just moving so slowly I can’t yet see the damage it’s doing. I don’t know when the clock will run out on my time with him, if my babies will get to grow up with their dad next to them or what his mobility will look like a year from now.
And I don’t understand — why are we getting this bonus round? Why do we get this extra time, these days and weeks and months that have been made so much richer by his diagnosis and this constant awareness of all we stand to lose, when so many others are losing the people they love right now without even a chance to say goodbye?
I don’t know why me, why us, why this miracle came our way instead of going to someone else.
I don’t know.
I just know that, for all the people out there right now, crushed by grief and wishing for just one more day, one more minute, one more hug, I won’t waste it.
I wanted to write something thoughtful about that experience, about all the trauma and tragedy and loss that has come our way in life and about how, even though I had a stroke at 34 years old and not even 18 months later my 37-year-old husband was diagnosed with ALS, we are doing our best to face it all with love and positivity.
But eloquence is eluding me, and all I can come up with is this — it’s really fucking unfair.
Happy 2nd Stroke-iversary to me.
During our darkest days last June, our son had baseball practice. Because even if your heart has been ripped from your chest, your kids still have school and sports and you still have to feed them and do laundry.
Chris was an assistant coach and could still grip a ball well enough to play, and we were working so hard to not let the kids know what was going on. So with bloodshot eyes we put the kids in the car and headed to the practice.
I walked Willa to the playground beyond the ball diamond and pushed her on the swings. I looked at the field where Chris was throwing batting practice and my throat tightened. I told Willa I wanted to watch her brother and walked a few steps away.
I looked up. On the hill overlooking the park was the hospital. From where I was standing I could see the wing where I spent the six days after my stroke.
I texted my mom.
“I’m taking a video of Chris throwing batting practice to Cohen because it’s probably the last time he will be able to, and in the background is the hospital and I can see the stroke unit. What did I do in a previous life to deserve all this?”
I turned my back to where Willa was climbing and swinging and going down slides so she couldn’t see the tears pouring down my cheeks.
Last night we watched “A Beautiful Day in the Neighbourhood,” in which Tom Hanks plays Mister Rogers. In one scene he is talking about death. He says death is the most human thing there is, and that anything human is mentionable and anything mentionable is manageable.
I cried. I know that in this space — where I write about being scared and sad and hopeful and worried — that’s what I’m doing, mentioning it all so that it’s more manageable.
I know my experiences aren’t unique. I know that because of so many others who talk about their tragedies and share their trauma. And I try to remind myself that because those people have survived unimaginable heartache and loss, if I ever lost Chris I would be able to survive, too, no matter how unfathomable it feels now.
Still, some days it just feels so unfair.
Last night, as I stared at my computer screen with the cursor blinking back at me, knowing I wanted to write but not knowing what, I went back and read a post I wrote on the final day of 2018, the year I had my stroke.
I had written about how, just a few months after my stroke, Chris’ dad told us he had ALS and how he died a few months later. I wrote about Chris’ family history. And then I wrote, “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.”
Six months later Chris was diagnosed with ALS. I had unwittingly foreshadowed my worst nightmare. And I have grown very used to that feeling of breathlessness.
I kept reading and, it turns out, I knew then the message I would need to keep going.
“Life,” I wrote, “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 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 during the 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 how 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.
“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.”
Two years ago today I could have died, but I didn’t. Nine months ago, my husband was given 12 months to live, but last night he lowered himself to the living room rug and did five pushups with ease.
Life doesn’t stop coming at you, and no one is keeping score of how much sadness and loss you’ve had to endure. A stroke at 34 and ALS at 37 is really fucking unfair, but wallowing in the injustices of life won’t get me anywhere.
It doesn’t mean I don’t feel angry at times.
It doesn’t mean that in those first weeks after Chris was diagnosed I didn’t wait until the house was empty so I could scream at the top of my lungs until my throat hurt and I fell on the floor crying.
This last month has been a lot. A lot of traveling, organizing care for the kids, asking for help (which doesn’t seem to get easier). A lot of emotional energy.
In four weeks we’ve flown to and from Toronto three times.
I am beyond grateful. I’m also tired.
On top of the increased trips to Toronto, Chris didn’t come home with me after our last one. He flew from Toronto to Boston because management goes wherever the team is over the NHL Trade Deadline.
He got to see his sister and niece and nephew, his godmother and her husband and his friends from growing up. He felt loved and welcomed in his home city. It was good for him.
It was not so good for the kids and me. Chris and I have always spent decent chunks of time away from each other during our relationship. I used to be on the road for work covering baseball and he has always travelled to varying degrees since working in hockey.
But I am no good at being apart from him anymore.
Resting in the hospital after Chris’ eleventh dose in the trial.
The first few days he was in Boston were rough on all three of us, but the last night before Chris got home was better. We knew when we woke up the next morning Chris would be there and as a result it felt like everyone was breathing a bit easier.
I cooked dinner. Willa took a bath, Cohen sat at the counter and talked to me, then helped me stir. We sat at the table together and ate. We each listed the best and worst parts of our days, like we do every night. I cut up some fruit and we sat in Cohen’s bed and read a chapter from Harry Potter. They brushed their teeth, I tucked them in and kissed them and told them I loved them.
It was all so normal. They were happy. Their life feels just the same as it always has. They know that their dad has ALS. They know their grandpa died of ALS. But they see Chris and, aside from his right hand and forearm, he is unchanged, and they seem to take that at face value. They live fully in the present without worries about what the future might hold.
Adults are not so good at that, though, and as the three of us sat around the dinner table that night, I found myself thinking that this is what it would be like, if we lost him, if it was just the three of us.
The kids’ smiles and giggles and stories at the dinner table distracted me from the growing pit in my stomach. The difference if we lost him, I thought, would be the absence of those giggles, the crushing sadness that would fill the space where Chris once sat.
Then they went to sleep, and I was really alone. The nighttime quiet that filled the house — something I usually find peaceful — felt heavy and sad.
I walked up the stairs and checked on our daughter. I listened to her soft snoring and kissed her cheek. I sat on my son’s bed. I watched him sleep. I brushed the hair off his forehead. I took a photo of him to send to Chris, to document for the millionth time how, no matter that he keeps getting bigger and bigger, when he is sleeping he somehow morphs right back into our baby boy.
I am worried about him. When we took down the Christmas tree at the start of January he sobbed. Every time I took an ornament off of a branch he grabbed it from the box and put it back on. He was mad and he was sad and lately those two emotions keep bleeding into each other. I know he was so overtired from all the excitement during winter break from school and I know from talking to my friends with kids his age that his behaviors aren’t abnormal.
But for me now there is always this heavy underlying worry when my kids are off. Are they feeling anxious about their dad’s health? Are they worried, scared, anything?
Our trips to Toronto are always hard on Willa. She handles our actual time away fine, but as soon as I pick her up the day we get back she melts into my arms and laughs and cries at the same time into my shoulder. For the rest of that day, every emotion she had during the days we were away comes spilling out. I’ve learned on those days to take her home, give her a warm bath, put her in pyjamas and cuddle on the couch and watch Netflix until bedtime.
Usually Cohen is fine. He‘ll ask for a few more hugs than usual and some extra cuddles at bedtime, but he moves forward and accepts that these trips are good and necessary for Daddy. Our last trip here, though, he was so sad.
I knew it was because Chris wasn’t coming home with me. Since Cohen was a toddler he has struggled with Chris being away. I used to have to warn his preschool teachers so they’d know to give him some extra patience and love those weeks.
I made it home that trip just in time to take Cohen to hockey practice. Halfway to the rink I remembered it was his turn to be goalie. I told him so and he started sobbing saying, “I don’t want to be goalie if dad’s not there. I want him to shoot on me. I want him to help me get dressed. I’m not doing it without him!”
And, of course, that brought all my deepest fears to the surface and tears to my eyes.
I know how he feels. I don’t want to do anything without Chris anymore, either.
When Chris is away now I feel like part of my heart is outside of my body. I tie his shoes and kiss his lips and send him off for another day of work, and I am so grateful for that normalcy. But when he walks out the door each morning I feel like I am loaning him to the world.
Waiting for Dose 11 and showing me all the strength he still has in his upper right arm despite his loss of strength and muscle in his right forearm and hand.
When he was in Boston I was so happy for him, but I also felt strangely jealous of all the people who got to spend time with him when I couldn’t. I truly believe that Chris is going to be healthy and independent for so long, but fear is a powerful force and when he was away all I could think about was what I was missing rather than what I have been given.
What I’ve been given is the chance to plan another summer of trips and holidays with my healthy family of four. What I’ve been given, already, is time that Chris’ diagnosis was supposed to take away.
I spent the last week asking myself, if I’ve been given all of this, what’s been weighing on me? What is it that I want? Yesterday, looking out the plane window as the mountains faded from view, I figured it out.
I want a guarantee that Chris will be ok.
When I was covering baseball, I loved endings. I was good at them. In journalism the end of a story is called a kicker, and they were my strength. I could almost always find a nice, clever way to wrap up my story in a way that, I hope, satisfied the reader. It was succinct, it didn’t leave you guessing, it completed the story.
But there is no kicker for this. There is no way to wrap it up. There is only this complete unknown, stretching out in front of me for the rest of my life. And I know that, really, that’s always been the case, that kickers only come in movies and books and, I guess in my case, newspaper articles.
I looked over at Chris, who was working on his laptop. He paused and told me something interesting about what he was doing.
I took a deep breath and let go. I’ll never have a guarantee. None of us get that.
But I have today, and I’m going to live it the best I can.
Yesterday you told me you are having trouble getting into the book you’re reading. I told you I’m having trouble getting into my own head.
It’s not a comfortable place to be most of the time, so lately I’ve been filling it with distractions and busy-ness and anything other than the thoughts constantly streaming through my very tired brain. I watch Netflix. I check Twitter. I listen to podcasts. I thumb through Instagram stories. Sometimes the only way to exist in my own head is to fill it with enough static that I can’t hear anything else.
Today is Valentine’s Day. It’s never meant much to me (though I was plenty annoyed the year you had to travel on February 14 because Marian Gaborik lost his passport on a plane and you had to help him replace it). I would happily ignore this day like I’ve been trying to ignore my constant worry and fear for you, but anymore all these holidays, even the ones I find silly, seem weightier. Plus, this one is about love, and, more than anything in the world, I love you.
So while I haven’t wanted to focus on my own thoughts lately, I am happy to focus on you.
I’ve said that one good thing to come out of this is that more people will know you. Because more people should know you.
They should see how selfless you are, how humble you are, how you have no ego in a profession that is full of them and how I’ve never known anyone who can so easily laugh at themselves. They should know how you love unconditionally and how you forgive and really, truly forget when people take advantage of that love. They should know that you always do the right thing and make the right choice whether or not it’s popular or you will ever get any credit for it and that you are the one person I know who listens to criticism and takes it in and actually applies it. You are living proof that when we know better, we can and should do better.
People should know that you have never wallowed. In the darkest days after your diagnosis, when the tears spilled down your face, they were for me and the kids and the idea of how sad we would be without you, not about all the horrible things you would have to face. That instead of crumbling, you loved harder and hugged tighter. They should know that as you stopped being able to sign your name and tie your shoes, I never once saw you shed a tear over losing your dominant hand. That last week when I asked you what you miss most about having two good hands, you didn’t hesitate before saying, “Nothing.”
They should know that you are the most grateful and positive person. That you are so good at being present, that I find notes all over the house from our kids, saying how much they love you. That they still run into your arms and squeal with joy when you come home from work each night, and that when they do, the biggest smile is on your face. Because in spite of everything, you are still always smiling and laughing and living. You inspire me and every single person who knows you. The kids and I wake up every day and feel ok because of you — because your optimism and your calm reassures us.
People should know that you are brilliant. You carved a career and a path where there wasn’t one and you just never gave up. You never played hockey, which was a strike against you in this league and sometimes still is, but smart people recognize smart people and you found your way to them. When you spent a year looking for a job after the Wild didn’t renew your contract, I never doubted for a second that you would succeed. Because you are the most resilient person I know, and I have never believed in someone as much as I believe in you. When things get hard, you get better and brighter and sharper and more determined.
People should know that you were made for this. You were made to inspire and do great things, to show people how to face their mortality with grace and love and intention. Watching you walk through these last months has been an honour. Your strength has given me mine. I am so proud of you, and I feel so lucky to be the one next to you in this life.
You should know — and I hope you already do — that I was made for this, too.
All those years ago at that bar on Brighton Ave, when I couldn’t stop staring at your smile and your blue eyes and when we piled into a cab with our friends to go home and our knees touched and my stomach flipped, the universe knew we would need to tell this story together.
We met when we were 21 and 23 years old and life seemed full of only good things. We fell in love and learned it’s hard to stay there. We buried your parents and had two babies and dealt with my stroke and now we are fighting for our future together. It’s not been simple or easy. It’s been a million times harder than I ever imagined it would be. But we wake up every morning and choose each other all over again, and because of that it’s also been a million times richer than I ever imagined it could be.
There are so many things about my life I am unsure of, so many things I question, but what I know for sure sustains me — I was put here to love you.
Eight months ago I sat next to Chris on a plane and watched him sleep. I studied his face and his eyelashes, I held his hand and looped my arm around his. I touched his thick, black hair.
I cried.
I thought about how I would never get to see his black hair turn grey, how I wouldn’t know how handsome he’d be as the years went by.
How I wouldn’t get to keep him.
Someday, I would forget the exact spot of the freckles on his face. I would forget how his eyes sparkle when he throws his head back and laughs.
Someday — someday soon — I would wake up and he would tell me that his body was slipping away from him. Maybe his foot would catch when he was walking up the stairs. Maybe he wouldn’t be able to raise his arm above his head. Maybe he’d have trouble taking a deep breath.
I didn’t know what was coming next, I just knew it was coming. The future, our future, was filled with sadness and anxiety and worry and loss.
That, I thought, was my unavoidable, unquestionable reality.
But yesterday, eight months after that devastatingly sad plane ride to Miami, I sat next to my husband on an airplane and, again, watched him sleep.
And he looked just the same as he did that day in June.
In these months when he should have been wasting away, when he should have been dying — he has not gotten any worse.
It’s hard to fathom. But the miracle I am watching unfold in my life every single day was made especially apparent to me yesterday, when Chris sent me a text reminding me how quickly his uncles, dad and cousin died after being diagnosed.
His dad died 8 months after diagnosis. He was 68 years old.
His uncle Brad died 8 months after diagnosis. He was 52.
His uncle David died 8 months after diagnosis. He was 48.
His cousin Matt died 17 months after diagnosis. He was 28.
Chris has the same mutation they had and that comes with the same life expectancy. The only difference is the one that makes all the difference — the clinical trial Chris is in wasn’t available to them.
So eight months from diagnosis, Chris should have lost so much — things like his ability to walk, feed himself, fill his lungs with air, project with his voice, swallow without risk of choking.
But this last week, instead of coming home to tell me about a loss of function, he walked in the door after a normal workday (another thing he should not have at this point) and told me he regained a small bit of movement in his wrist.
I know I posted a video of this. I know so many people have seen it and rejoiced with us in this news. But as I watched him sleep so peacefully on our flight to Toronto this month, I simply could not fathom the miracle taking place here.
I cried again, but this time for a different reason.
My husband is living with ALS. We believe he has had zero disease progression since we started in this clinical trial. Instead, it seems some of his nerves might be healing.
So much of my life is spent getting through each day, taking care of the kids, checking in on Chris, checking in with doctors, reading, researching, writing, doing laundry, making lunches.
There is joy in each and every day of my life, joy in all the normalcy, joy in the kisses goodbye as Chris goes to work, joy in seeing him on the ice at our son’s hockey practices, joy in the life we weren’t supposed to be having at this point.
But in the chaos of everyday life I can also lose sight of the magnitude of what is happening here.
Because it is great. It is miraculous. It’s the greatest story I’ll ever witness and the greatest story I’ll ever tell.
And, we wholeheartedly believe, it’s just getting started.
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 strategicallytucked 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.
📷: @VartyCamera
