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