The first several months, and I mean several, after Elle’s diagnosis, Tim and I were lost. We both were acutely aware of how the earth had shifted from beneath our feet and everything that we had dreamed about for our lives together was no longer going to be our reality.  I remember one summer day, in our attempts to hold onto the notion of what a “normal” family looks like, we took our two girls to a small summer festival north east of Seattle.  Face painting for Amelia, food stands, and music… just trying to be a normal family doing a normal activity surrounded by normal people with normal lives…  We were outsiders in disguise.  

We found a place under some trees, laid out our blanket, and sat down to listen to blue grass fiddles while Amelia snacked on cotton candy.  Tim lifted Elle out of the Kelty backpack and sat her down between us on our blanket.  I don’t remember all the specifics of this moment, but I do remember that at one point we were both observing Elle, how she was holding her body, tilting her head,  the fact that she had to wear glasses to correct her lazy eye.   It seemed to be one of those moments where the gravity of our situation set in for us both at the same moment in time.  We looked at each other, and we just finally knew at the deepest level our lives would never be the same again.

From the beginning, Tim has always been my rock, physically and emotionally.  If you know Tim, you know he is built like a line backer but has the softest of hearts.  His blue eyes and dimples stole my heart in the beginning but it was his mental out look on life, his love of adventure, and his emotional strength that has kept me by his side for over 24 years.  When we were first trying to make sense of what was happening with our 2nd born daughter, every book I read about having a special needs child warned us that our marriage would must likely suffer and that we had a less than stellar chance of staying together as one.  Apparently it was not enough to grieve over our daughter’s diagnosis but we needed to also prepare to sacrifice our marriage too… double blow.  I eventually just stopped reading all those books and have learned over the years that I already hold my own answers, my truth…

At the time, I was not really clear what or how my husband processed his feelings about his luminous blue eyed daughter.  Men can be difficult to read.  During that time he was working for my step dad’s company spending a few days most weeks in Portland drumming up business.  I was alone a lot or at least it felt that way.   Although we lived in a newly constructed custom home in the country, I longed to be in a cookie cutter suburb with other mothers and kids to surround and distract me from my pain.  I desperately needed other women to help me to learn how to be Elle’s mother.  I needed someone to share in this experience of being her mom as it felt too heavy for just one mother to carry.

It is strange how in the midst of grief it feels as if your life is frozen in time while everyone else in the world continues on without you enjoying vacations and family gatherings.  One summer evening while Tim was away in Portland, I decided to take Amelia and Elle to a field of sunflowers on the edge of the Skagit Valley.  As we drove out this long country road to our destination, my mom and step dad passed me by going the opposite direction.  I don’t believe they even noticed that they had just passed us.  But I do remember thinking they must be on their way home from dinner and how the fuck can they be out enjoying themselves when I am so alone and scared.  Perceptions are deceiving.  I had a lot of work to do, soul work.  The sunflower fields helped though…

In early Fall, when the Valley is at it’s most bountiful season and when the Cinderella pumpkins are ready for choosing,  Tim arrived home from one of his business trips in Portland.  “Shelley I have something I want you to listen to after we get the girls to bed tonight.”   he said.  A little while later after I had finished nursing Elle and Amelia read Go Dog Go to her daddy, Tim took my hand and led me to our den.  “I discovered this pretty amazing musician while driving home today and wanted you to hear it too..”  he said.  I settled down on the pull – out couch while he queued the music on our dial up internet.  It took a few minutes.  Her voice began to sing the melody of an old Sting song, Fields of Gold.  Angelic, haunting, and soothing all at the same time.  I looked over to Tim and his eyes were wet with tears, which immediately made me cry … again.  “Will you stay with me, will you be my love among the fields of barley, I swear in the days still left, we will walk in fields of gold….”  Her name is Eva Cassidy, he said.  Tim went on to tell me how Eva had fought a long battle with skin cancer and it was not until after she had passed away that her close friends released her music for the world to hear.  Eva’s rendition of Fields of Gold is second to none.  I learned that summer night that music was one way that my husband processes his emotions.

After we listened to a few more of  Eva’s melodies together,  we came to the decision that we needed to make a move to Spokane where Tim’s sisters lived with their husbands, kids, and his mother.  He described to me his memory of arriving to Colorado to be with his family after his grandfather had passed and that by being with his family  he was finally at peace and knew everything would be ok, in spite of the loss of a  man he adored.  I was also ready for a change.  Even though my mom and I were very close, I needed to find my own way for awhile, to find my own wings.  It was not an easy decision, but Tim and I both felt like we had arrived to a place with clarity and peace.

The Inland Northwest is surrounded by Fields of Gold.  Many years have passed since those early summer days among the fields of barley.  Tim and I have seen our children run as the sun goes down among the fields of gold.  I’ll always remember you, and how you were my rock, my love, when the west wind moves upon the fields of barley.  You can tell the sun in his jealous sky when we walked in fields of gold.  When we walked in fields of gold, when we walked in fields of gold…

 

 

 

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