She’s been sleeping in our bed quite a bit lately. 62 metallic gold polka dots I counted. There are a lot more but between the folds in her shirt, the comforter hugging her and her daddy’s hand lightly resting on her back that’s all I could count. Tonight like many others we try to absorb her, memorize her and try to catch the sand of the hour glass in our hands for just another minute.
I just realized as I sat down to write this that I haven’t posted for a year. I’ve thought about it many times but I suppose I feel comfort in keeping the details close as if people can’t see the elephant in the room. So I will try to give you a glimpse of our year.
We moved into our new home! Yes, it was a sweat equity thing and we still have work to do but… ta dah!! I guess I should back up a bit. We were living with our best friends (neighbors) while our house was being built. Fast forward to today and we are still living next to our best friends in their new house! It’s another amazing story but perhaps another time. We have 5 beautiful acres and mountain view! For some of you that have followed us from the beginning you understand the ordained amazingness of it. It’s something I am still in awe of.
We spent last year like many before it…enjoying life and each other. In April we flew to Chicago in a coordinated surprise for our parents 50th wedding anniversary.
They are beautiful. My parents are grand people with plenty of life under their belts. My mother is lovely and my father is strong. We spent the weekend all bunked up in giant cabin and I loved every minute of it.
We spent our summer grabbing our towels for days on end at the waterpark or making sure we packed our gym shoes for the roller coasters.
Of course through these remission days many phone calls were incoming and outgoing to my sister. As we all celebrated Lane’s remission we also struggled with the pain and declining health of Jerry. ER visits and increased medication were the subject of some days while planning vacations and dinner dates were others. Jerry’s motto was pretty much doing everything BIG. So when they came to visit this summer it was of no surprise to me that their visit to our neck of the woods was in Jerry’s words ” a total 10″.
My parents and my brother Jacob and his wife Heather also came for a visit. We spent July 4th once again with the sun on our faces and our feet in the water. We hit the taco joint a time or two, learned how to make coffee and got some spontaneous pedicures.
However behind the veil of family fun was a mom taking pictures not just for the joy of the moment but to pause life for a token of remembrance. I always hold their hands a little bit longer, trace the freckles on their face, or study the way they move…so I can remember.
August 18,2017 (Pictures from a PET scan shortly after MRI diagnosis)
After our cafeteria lunch we waited in the inpatient side of pediatric oncology. By the time the results came back the clinic was already closed. They allowed us to wait and the on call doctor would meet us in the room with results when they were ready. I knew it was back. Not because he suggested Lane go into the playroom when he walked in or because of the way the nurses looked at us. I study her face daily even hourly sometimes. I knew something looked different. As the doctor sat down he delivered her death sentence. “She will die from this” he said. We collected ourselves and went into the hall to scoop up our girl and run away. As she saw our faces she started to cry and said “It’s back isn’t it’? We left the hospital hand in hand sobbing.
Lane started a medicine that was a hope to extend time and slow the tumors. By the time she started the medicine the tumors had already spread. One tumor struck me as particularly cruel as it had attached to her rib bone and actually fractured it. That one felt personal. It felt needlessly insulting as if her cancer was flaunting it’s power.
Over the next several months there are events that I still have no strength to speak of. I will only say it is not my story to tell but I miss him terribly.
No sickness, no hair-loss and no throwing up. Those were her requirements before even thinking about additional treatment. ” I just wanna be a normal kid” she told us. This child has had cancer almost half her life. She’s fought harder and longer than I can grasp. My bones had to stand fast against my flesh wanting to wrap my arms around her and cry out how unfair, how tremendously devastating this was for her…for us. How much I wanted her here with me and to collapse together into a world of hope that denies reasonability. My love for her has to surpass my brokenness for myself.
That’s what True Love is.
Our conversations are a pendulum between the glistening shimmer of the golden floors of heaven and the breath of what’s left in this life for her. Time belongs to God. This is our motto. We constantly pray for a miracle. We are also carefully guiding our sweet girl on the path she has been given. Without fear and without regret. We have a deep sorrow that is tied with a ribbon of hope. These words can not possibly give justice to her or what she has been through. A few minutes of reading this can not incase our daily struggle between hope and what seems like endless weeping. However, she is a light that will never be extinguished.
She is the love of my life.
May I present my warrior and remarkable gift….Lane Sanwald.