Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I lift up my soul.
Dear fightlikemike army,
I opened an email from a dear friend this morning that started like this ,
Just when you need everyone the most , here comes social
Our family needs you more than ever. We feel your love , prayers and support from wherever you are sending it from , but I couldn’t find his words more true. We need you. I need you. And we wish it felt easier to hug you.
I won’t begin to try to understand , question, or figure out the world we live in.
I will continue to surrender to Gods plan each and everyday. Each and every moment . Step. Breath. And repeat it again until I can catch my next breath.
That’s all I can do.
In a blog I read the other day grace was described like this,
“And as Simone Weil says, grace enters and fills the empty space wherever there is a void to receive it.”
I’m finding Gods grace in the emptied me. The one that has cried til I can’t any more. Until I feel empty. Then there is room to receive grace. And God. And love. And I can find joy again in the next moment and I can make the next peanut butter and banana sandwich for Graham,
play the next game of horse with Jake , make the next beaded bracelt with Celia , or laugh at the next romantic comedy with Mike. I can take the next step.
I told Celia that we have to get all our salty tears out when we feel sad so inside of us doesn’t turn yucky and brown like the furniture on the porch at beach condo that has been drenched by the salty ocean spray. We are crying together.
We did not receive good news from Mike’s latest pet scan last week, yet I feel my heart already knew this was coming going into the week. He has been suffering more and becoming more tired and confused.
His leukemia has spread and his lung has worsened. Because he is not able to breathe deep enough or exhale enough , it has caused a build up of carbon dioxide in his body. This causes you to become confused and disoriented. I have probably been noticing this for a few weeks but it has been subtle and I had been hopeful it might be because of medications . Over the last week it has gotten drastically worse.
If there is anything about this process that is giving me the slightest bit of comfort is that his pulmonologist has let me know that patients who experience this type of carbon dioxide build up typically are not in pain. He seems very peaceful at times and that’s all I could ever ask for in this process for him. He is still getting up, eating plenty , disciplining the kids 😜 from his chair , and loving us. I am finding some grace in the humor of funny dreams and thoughts he is saying out loud.
But at this point his doctors have let me know that we have medically exhausted all our options on this journey. Yet even in my deep sadness and grief of this news , the gratitude I feel for his doctors is deeper. And is keeping me
Going. Mike and I have nothing but the very most love and gratitude for the medical teams including doctors , nurses , techs, and everyone who has cared for Mike. We could never repay them for what they have done for us and the time
they have given us together. Each day. Each day has been a gift.
And as our world fights this pandemic, I feel honored to know and call these people our friends. They fight and care for the weak and suffering each day.
And when you have been a part of this vulnerable percentage of the population , there comes an indescribable amount of gratitude and love for these individuals who make sacrifices on their own lives to walk this journey with you. It is not one for the faint of heart for them either.
We do not know timing wise what this looks like for our time left with Mike. But we have never been concerned with that. Because we will keep on loving each other through these very heartbreaking and beautiful days.
The Saturday before Mikes pet scan on Monday , we decided to take the kids to my parents lake house for the day and night. Mike was starting to be more confused by then but we decided to brave it anyways. We packed up the van with three kids , two dogs , oxygen tanks , medical supplies , IV poles , all the snacks I don’t let the kids have like Cheetos , I even let Jake bring the Nintendo switch.
I believe I knew this might be the last trip the five of us would take together which is what pushed me even more to make it happen as chaotic and crazy as it was.
When we got there Mike climbed down and then back up the stairs just to teach me how to change the water filter. If you know him and his dad and brother , you know they can fix most anything. ❤️Something my brothers and dad have called upon Mike for many times in a bind 😜. But he talked me through it in his state of confusion none the less. His sharp mind was still there , he hasn’t forgotten all the things he learned as a kid. Things I love about him the very most, where he grew up and came from and learned how to be who he is.
Celia watched and listened closely to every word he said. I’m convinced she could change the filter now too❤️
I took Celia and graham on many rides on the new Gator . Jake would stick close by Mike’s side
at the house for most of them.
While we were riding through the lake woods Celia would
Love to sing , We are
Going on a bear hunt. But just the thought of a bear in the woods would make Graham’s eyes get big and fearful however he still couldn’t get enough of the song and would say , lets sing it again.
“We are going on a bear hunt. I’m
Not scared . Oh no, there’s a tree in the way. You can’t go over it , you can’t go under it , You have to go through it. “
We had a simple kid dinner of hotdogs , chips , and box noodles that I apologized to Mike for , he said it’s the simple things that matter.
After we ate we loaded up on the gator , oxygen tank and all. And took one more ride as the sun was setting.
It was the most beautiful , orange sunset. I told the kids that any time you see an orange sky like that You know it’s a fightlikemike sky . And that God is always with us.
We are choosing to go through this really hard , scary , sad, but beautiful time.
We can’t go over it.
We can’t go under it.
We have to go through it.
We have to go straight thought it to come out on the other side stronger
We are facing these fears , ALL of us , together. Letting everything happen to us.
“Let everything happen to you
Beauty and terror
Just keep going
No feeling is final”
Rainer Maria Rilke
And although right now I feel like I have been punched in the stomach 24 hours a day and night and have been completely knocked down.
I know I will get back up.
Mike has taught me how to do that.
I will get back up for him.
And will be able to do so because we are surrounded by family and friends who won’t let me stay fine down.
“It's not whether you get knocked down, it's whether you get up.”
And when I am able to get back up.
I will face that frightening bear of cancer head on.
For the rest of my life.
And I will share love with as many people facing similar or different battles each day.
Praying that sharing loving will catch on and be more
Contagious during hard times than any damn virus.
Because no doubt , love has been our cure.
I’m learning that we have to live our life open to everything that happens to us. Believing God will take
care of us and that we are ultimately in his hands. Jake , Celia , and Graham are teaching me how to be brave during this time as we have been honest with them each step of the way , we are honest with them now. But we need your love and prayers each day. Thank you for loving us.
Please also know that even if I don’t respond to calls, text, or emails I do read and cherish each and every one and will hopefully one day be able to thank each of you. 🧡