The fight continues
Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.
The last two weeks have felt particularly dark. Almost as if winter came early. Like a bear crawling into its cave to escape winter, hibernation felt safer than facing our story. The only reminders it was still summer was the wet bathing suits on the floor, popsicle sticks, and contagious laughter and giggles in our home.
Inside my heart, I felt the winter darkness coming early and trying to steal my summer light and joy.
But I have prayed desperately to God to bring me back to his light.
I have prayed for courage for us as we face this next battle.
Prayed for Mike to have the strength to stay in the fight.
He never lets us down, doesn’t worry, pr feel sorry for himself, but you know, someone’s got to do it for him 😜
Last week the seas were rough. Stirring up all the unwanted emotions of fear, anxiety and hopelessness in my heart.
The winds were strong and knocked the wind out of me again as we sat and listened to the the doctor tell us about Mikes lower right lung removal surgery.
I held it together until the ride home , when he asked me a simple question.
What about lunch?
Life is so strange.
We were just in a room discussing how no medication will help this fungal infection and surgery to remove the right lower lobe of his lung was the only option. How they will have to saw through his 6th rib to make a clean break. How it will take 5 hours and there are a NUMBER of risks , especially because of his health status going into surgery. How he will be in the hospital a minimum of a week with drains coming from his body.
Dr Kota told us ahead of time not to worry about the statistics bc if we had from the start three years ago we wouldn’t be here today. The doctor did have to talk cold turkey, as he said, so we were not blindsided. However he was gentle , genuine, and Hopeful! He did not talk statistics. We felt we were in the fight place with the right guy for the job.
We drove home , in the sunshine and unusually “ cool” 80 degree summer weather , and we
had to talk about lunch .
The world was still spinning.
It felt weird .
I couldn’t even stomach it.
But that’s life.
As our world stops.
The world still goes on.
Kids have to be fed.
And as Wes reminded me , I have to go make little people mad by taking away iPads and iPhones! :)
I have to do the daily grind.
We have to keep living.
While the weight of the world is on our shoulders.
How do we do that?
I don’t know.
But I know what helps.
And it’s people.
And it’s faith.
And It’s belief in a bigger purpose from pain.
It’s belief that maybe our story will help someone else.
Yesterday morning things became a little clearer as I promised myself to get off my pity party. Sometimes light, hope and joy are just buried by the murkiness from rough seas. And as Mark Nepo reminds me, I have to wait for the murky water to settle in order to see clearly. It seems to be settling some.
Things are put into perspective through other people we have met along this journey. Christy our nurse and dear friend reminded me that On the BMT floor when he was admitted to the hospital last weekend and I keep playing what she said through my head whiners I feel sorry for Mike.
She said think of all the people who are told there are no more option on a daily basis, we do have an option. It may be a risky one, but it is Mike we are talking about.
And don’t we know that. Sadly we have lost 5 of our friends we became close with and started this journey with three years ago.
Perspective leads to gratitude. When I can chose to be grateful that there is an option for Mike , I find some peace again.
Perspective is found by being vulnerable and being open to others.
I have a new friend, Drew. I was I introduced to her through a friend of a friend.
Her husband was diagnosed with AML a couple months ago.
We went to see them in the hospital With hopes maybe we could be of help to them , but Drew was across the street for her own treatment. It’s strange how she has instead become an inspiration to me.
She was diagnosed with cystic fibrosis at the age of two. She has doubled the life expectancy , she was told she would have.
She has sat with the fear of death on her shoulders for her entire life. But what I am most grateful for is her humor amidst the heaviness of suffering. She has made me laugh out loud with her vulnerability and sarcasm through text while sitting in the dark.
There is no cure for cystic fibrosis. She has suffered her entire life and now , she is the caregiver of her husband who has AML.
Someone is always fighting a battle harder than yours.
Life is a complete mystery to me.
It makes absolutely no sense.
And seems so unfair at times.
But I believe God has placed us in each other’s lives on purpose.
My mustard seed of faith remains, because of people. I won’t stop believing.
Yes this is unfair that Mike was gifted a lemon size infection( not to be confused with a small grapefruit , that he was told in the hospital , don’t worry he measured it ) in his lung. It’s not fair after all he has been through. It seems unfair that he is suffering everyday.
But it’s also not fair that that others are told there are no more options.
Drew was recently on a life changing trial drug for CF that made her feel that she almost could breathe normal .
However , it caused major liver damage to her and so she was forced to stop it. So now a drug that is life changing in the CF world is of no help in to her.
This is unfair.
But it seems the only way to get back to the light from darkness is to own your reality.
To face it head on.
Mikes reality is lung removal surgery. We face it head on in two weeks.
Today , we own our story.
We choose to be vulnerable.
We chose to be brave.
Because mike and I believe in love , hope, and joy win every time.
What gives us hope , is to think our story may help some one else.
Mike may not benefit from the cure , the current drugs available , or the treatments offered years from now.
But we sure as hell hope that someone in the future will . Like Drew has done her whole life , we keep believing more options will become available. We pray and hope this for all the people diagnosed today, tomorrow and years to come.
We are grateful for all of the love and support you share with our family. Food , cards , flowers, taking Jake, Celia , and graham on adventures. We are grateful for them all, not one thing goes unnoticed, I promise.
If you feel hopeless near or far, there is a simple thing you can do for us .
You can donate or volunteer for something.
It doesn’t have to be for a cure for Leukemia , it can be for CF , or for any cause dear to your heart and your suffering.
Donate with hope for a better future , a better world.
With the help of so many, we have started a new foundation.
We are in need of our prayer warriors and army once again.
If you want to show love to Mike from a far , you can buy a Fightlikemike t-shirt .
These shirts pulled us through the last three years and have gotten us to where we are today.
We will be selling them again in the next two weeks with hopes to show Mike a little extra love in his fight these next two weeks.
All the money goes to care for patients, caregivers , and research for a cure.
We are hoping we can get them to you before his surgery on the 13th. If you live here, we will do our best to get them to you.
I will have more info about the shirts on our blog in the next couple days, Fightlikemike.org.
You can also email me if you want to purchase one.