I have been writing over the past months but not knowing what to share and sometimes if it is too much and too sad to read. But last week , I lost a dear friend. As I put it on a facebook post,
Emily and John were our, in the boat buddies , fighting the waves of this this relentless storm. Emily's death has left me breathless. She fought harder than anyone and cancer wouldn't back down. It is unfair. Life is sad , I realized. But life is also full of hope and joy. And PURPOSE. Mike and I feel we are on this journey on purpose and that we are here to are it with others. To bring joy and love to those suffering but also to be with you in the sadness. So I will share my heart here, with hopes and prayers that it will help others . We are doing this to keep hope alive , even when life doesn't go the way we planned. Hope lives there too. I promise all post won't be sad. I am surrounded by so much joy and love, I want to share all of that :) We keep swimming and fighting for her and for all those who are suffering. No one fights alone.
This week three years ago was the beginning of our new life. I would like to think of it now the new awakened life instead of the storm that wrecked our lives.
Instead of doing my Everest size mountain of laundry or something productive where I can see actual results , while Celia was surprisingly napping on a Sunday afternoon after her first sleep over and the boys are away….
I buried myself in the words of Nina Riggs.
Why I do this to myself I’m not sure.
I have read almost every (exaggeration 😜) memoir and love story of those brave souls fighting the quiet yet breath taking disease that is haunting our family ...And haunts me in some of the very few quiet moments I have.
So I read. And read. Heartbreaking and hopeful words. Hoping that I will wake and come up from their words and either the laundry will finished by my mom 😜or the warm laundry will be thrown on top of me and wrap me in the cozy and safe world I see in Grahams eyes after I have tossed it on him straight out of the dryer. His smile is full of love and coziness. Full of peace.
I want that peace back so desperately. To be back 3 years old. Where the world feels only warm and safe. So I search for it in the words of these brave souls who have walked this road before us. Surely they have it figured out.
Sometimes their words warms me and sometimes I feel the hot sting from the metal button or zipper.
Nina is fighting an aggressive breast cancer. She also is the great great great granddaughter of the poet Ralph Emerson . Her writing in her memoir , The Bright Hour , is beautiful.
One story she tells of her husband leaves me with the sting from the zipper. She says one night before bed her and her husband were arguing from the effects of the disease before falling asleep , (an all to familiar story for me and mike ) , but after they fall asleep mad , he wakes her in the middle of the night and says to her,
“I’m just so afraid. So afraid I can’t breathe. “
My stomach turned in sadness first as I read because someone else had felt the exact pain , but also relief that I was not alone.
Some nights...I wake ....and I can’t breathe .
I think to myself this must be what a heart attack feels like. Graham and Celia and Jake must be all laying on on my chest .
But no. It’s the feeling cancer leaves when it haunts you in the night and wakes you in your nightmare only to realize it’s your reality in the day too.
It sneaks up and snags my breath without warning. Quicker than Jake can snag an idol phone or iPad when no one is looking.
The thought of living without mike ...it leaves me breathless.
I know I need to come back to the present moment.
He is here.
He is breathing.
I am breathing.
Today is ok.
I hug him tighter in the darkness of the night. He grabs my hand ,squeezing it . Giving me the peace and assurance , it will all be ok.
I pray to God . I pray that his squeeze of his hand is right.
Like Nina, I love the morning light. “The Bright Hour “ she calls it.
It breaks the pain of the night.
I am grateful for another day to just breathe and breathe with him beside me on this miraculous earth.
I go for a run. I finish the run by climbing and sprinting Chesterfield. The big hill by our house. It’s always tempting to take the easy way out and turn right on Silvapine trail , the flat easy street to our home. The one requiring less heavy breathing.
But Mike taught me a lesson in the days after his diagnosis and transplant . He never skipped chesterfield. It was his own mini mountain and physical representation of the inside climb his body was fighting. Like his own proof to cancer who was in charger of this fight.
Weighing in at about 145 lbs, his skin crawling with fire ants on the inside and what felt like your worst sunburn on the outside, no toe nails, a bald head covered in one of his 20 toboggans we excitedly bought as a Christmas present to himself.
What else do you get excited about when your a cancer patient in the dead of winter? His favorite Bayliss sweatshirt( that I cant not look at now without instantly smelling hand sanitizer and picturing him laying lifeless on our couch)topped with two more jackets. It took about an hour to prepare to go outside for just a walk.
But he did it .
Some days I would suggest maybe we skip the hill.
You seem tired.
But he would just give me the look. And so we made the trek up.
He would breathe so deep on days right after transplant to make it up. Each step hurt , almost as he has to learn to walk again, him and Graham were learning at the same time. He was starting over gaining confidence and strength in his legs just like a 1yr old, yet he was conscience of it and Graham showed no pain.
And I sometimes wondered if I would be calling EMS at the top 😬.
I never had to, thank God.
Yet he never gave up , he NEVER gives up.
No matter the size of the climb.
He keeps breathing deep.
AND ....even if there is no promised view at the top.
Would you keep climbing if a view or stopping point wasn’t promised ?
Not really a finish line either.
I’ll be honest , somedays this keeps me from breathing.
BUT Mike reels me in.
He focuses on each step of the journey.
The actual climb of the mountain.
The breathless nights.
The Climbs with no view insight.
Each painful step.
He lives here.
He is my hero.
I want the cure.
I want it So bad I can’t breathe.
But we aren’t promised that.
So when I’m struggling , I climb chesterfield .
I find Hope and strength on that street, the same one I have run up since I was a kids having had no idea how hard that climb really would be one day. That the hill could actually bring breath back.
I get my breath back for the day.
My prayer continues to be that Jake and Celia and Graham will know this resilience. This grit. To not give up on the climb.
If there is one thing that makes us angry and worried is the thought of them enduring the pain and effects of this journey.
However I believe if they are made from love and made by a God who loves them , then he will love them through this too.
I believe they are learning along side with us that life is about the journey.
Not the finish line that matters .
Not really even the view.
It’s the actually just the LOVE on the journey that matters.
When I can’t find my purpose.
Or love is hard to see.
I climb Chesterfield.
And remember the days of climbing it with Mike.