beauty in the brutal

I woke up early this morning, unable to sleep because my mind was racing yet my body is exhausted. This happens a lot. I can’t lay in bed thinking because I soak my pillow in tears. Instead I get up and write, read or, when I was the fullest version of myself, go for a walk or a run.

This morning I sit here in the dawning light of our farmhouse and think “how did I get here?” How are we already at the declining part of this story? It happened so fast that I’m still surprised to look in the mirror and see who reflects back at me - a skinny, bald, terminal cancer patient I barely recognize.

It wasn’t that long ago that I was running, playing basketball in the driveway as a family, doing house projects, leading a non-profit organization, spending time with friends. Of course, COVID plays with my memory a little because I went into quarantine a happy, healthy, strong person and came out a bald cancer patient barely able to walk up a flight of stairs.

While COVID stole a year of togetherness, travel and brought a terrible added layer of stress to our progressing terminal cancer experience - I choose to look at what we gained. Our family moved to our farm for 3 months where we had more time together than we could have ever imagined with two busy teenage boys and two professional parents. We ate all our meals together, watched movies, did lots of farm projects, played games, slowed down and felt safe and connected in ways I don’t think we will ever feel again in the busy, “normal” world. The pandemic was devastating in a million ways, but like cancer, I choose to find the beauty in the brutal. It’s the only way I have found to make sense of tragedy.

And, that’s what we are trying to do now as we continue to balance a year of progression, unsuccessful treatments and physical decline with family game nights, soccer tournaments, wake surfing and telling each other “I love you” daily. Holding joy and fear in the same hand, at the same time.

I have lists of things I want to do to help ensure I am in the boys lives even when I’m no longer physically here. For years I added things to the list but never acted because I would rather go out on the boat or go for a run together. I would do all those legacy things when I could no longer physically do all the fun things with them. Years from now… surely. But, here I am. I think I have to start and I think I have to be pretty intentional if I’m going to get to everything on my overly ambitious list… write a book, write cards, journal & record stories of when they were young that I would tell them if I could, organize photos, make thumb prints in clay, record me reading our favorite children’s books for their future babies to listen to,,,, The list goes on. And on. But, I can’t start. I can’t believe we are already at this point. I would do anything to go for a run instead.

The hardest part of all of this cancer bullshit isn’t the debilitating side effects, loosing my strong, healthy body or my hair. It’s the idea of loosing our family. That the 4 of us, Team Mac, will never be whole again. I feel cheated out of so many special moments together. I think about how I will single handedly be responsible for causing them deep, heart breaking pain. I think about how different life will be when I’m not here and how there will forever be a whole in our family. And, I cry unstoppable tears to not be able to watch our boys grow up and be here to love them, encourage them and be a part of the beautiful life ahead. Sometimes I dream about the future if cancer hadn’t invaded our life. I think about how freeing it must be to be able to think about taking your kids to college, retiring and growing old. I dream about how fun it would be to be with our sons as men. Grabbing a beer at an outside concert in a park. I dream about watching our boys become best friends. I dream about how fun it would be to be a grandparent with Jay. He’s going to be the best grandpa…. and I think I would be a pretty good grandma. One night I cried uncontrollable tears on Jay’s chest as I sobbed, “I wish I just knew I could watch.” I know I am going to die and I’m going to miss so much of the life we created together, but I just wish I could watch you guys together.

So, if I have to miss the majority of our families story - how do I implant myself in their hearts so they feel I am here, forever? How do I remind my 3 boys of my love and share guidance when it’s been years since we hugged? How do I give them all peace to move on to life beyond me while also holding me close? Sheesh, this is a lot to process before coffee. Netflix would have been an easier choice for my sleeplessness this morning.

As we find our way through the unthinkable, we will continue to balance joy with pain, love with heartbreak. This is the never ending struggle of facing a terminal illness - living life as fully as possible while slowly letting go of the life we love. I do all the normal every day things like buy school supplies while crying uncontrollably that this might be the last back to school I am here for. Choosing 1,000 times a day to find beauty in the brutal.

“One of our greatest freedoms is how we react to things.”

My friend Anne snapped this picture on our farm. The sun is shining, wildflowers blooming, I am smiling. I am also in pain from a recent catheter surgery to drain cancerous fluid from my abdomen. I can’t breath well because of the fluid around my lung. I am weak & bald. I am sad. I choose to ride to the top of the ridge and watch the sunset with friends. I laugh spontaneously and give thanks for the gift of this special place. It doesn’t mean sadness isn’t part of the moment. It is all wrapped together. Wildflowers, tears, golden light and immense darkness. This is my hopeful life.