… preparing for the journey

It was a year ago that I sat in front of a surgeon that said to me our time had come.  It was the one conversation I had been dreading.  Six months before I had given Elizabeth a bath and as I sat her up on the edge of my bed as I have done countless times before I noticed something very different about her.  I ran my fingertips down her spine and realized that what should have been a straight line was actually the shape of the letter S I was tracing.  On her left side there was something that was protruding from the lower half of her back.  I immediately called the doctor who said bring her in first thing in the morning.  Less than 12 hours later I was sitting in the emergency room of Children’s Hospital listening to a senior partner of the Ortho team telling me that Elizabeth needed surgery to correct the Scoliosis that had formed due to years of sitting in a wheelchair.  I also learned that her hip was 100% dislocated and that her rib cage had popped out of place and that was what I had felt last night.  An appointment was made for a few days later with who I was told the best Scoliosis surgeon in the country.

Elizabeth is one of the lucky ones, I know this.  I also know that it has nothing to do with luck but God’s amazing hands on her tiny, fragile body.  When Elizabeth was born at 22 weeks it was miraculous that everything was developed and that she was as whole as a baby born at term.  Her eyes were still fused together, very normal and in due time would open and show us that she had the will to fight to live, sheer determination poured out of those beautiful baby blue eyes the morning I walked into that NICU to see her looking at me for the first time.  Rarely sick, just a handful of surgeries to this point, doctors would praise us for the care we provided for her.  Again, this was not because of us but because God had placed His hands around her and was her ultimate Caregiver.  I can’t help but smile when I think of how true that last statement is.  I do my best everyday with Elizabeth … I bathe and dress her, I feed her and make sure that she is given the medicines that she needs.  Doctor appointments are made, therapies are attended.  There is not a day that goes by that I am not taking care of her, however at the end of the day I am just the person here that God trusted with His child.  And yes, there are many days that I question His decision on that and this was that particular day.  What could I have done differently, did I let something slip by me and this is why Elizabeth was in need of this surgery?

Josh and I were fighting, even years after the divorce we still were fighting.  Sitting in that doctors office with him was not where I wanted to be.  I also knew that we had very different opinions on Elizabeth’s care and was preparing myself for his opposition to whatever the doctor was going to say.  We stood in front of an X-ray, we didn’t even have to be told what we were looking at.  Almost a perfect S … this would be one of the very rare times Josh and I would agree.  Neither of us were emotionally ready for this surgery, the risk was too great and we just weren’t ready to lose her, not yet.  We wanted the holidays with her, we wanted that time with her that we knew we might never have again.  He gave us six months, that was November.  Therapy was increased, braces and a special seat for her wheelchair were made in hopes that at the very least we could prolong the surgery.  Every night I would quietly tip toe into Elizabeth’s room and put my hands on her back, please God I would cry out … you can heal her.  I had been here before, my hand on her tiny body begging God to make her well.

Every morning I would trace her spine and knew that it was getting worse.  She began to lean over to one side and could no longer hold her head up.  “Put your head up, please Elizabeth lift your head,” became a common saying for everyone who spent any time with her.  It was so hard to watch and I knew she was in so much pain but she never complained.  As our six month mark closed in my heart grew heavy, I just wasn’t ready for this.  Elizabeth was rapidly declining, her breathing was now being affected by the spine that had curved so much it was lying on her heart and lungs.  She would gasp for air and labor most days.  She was a tiny 40 pounds at the age of 10 and I could see every bone through her thinning skin.  I was losing my battle.

There I stood on that spring April day, exactly where I had stood 6 months prior only this time I had 2 X-rays in front of me.  The spine had gone from a 40 degree curve to a full 90 degree curve in the six months that I had spent doing everything I knew I could to keep from having to put her through this surgery.  I felt defeated, for the first time in a very long time with her I felt as if I had failed her.  Surgery was scheduled for May.  I called Josh although I can’t even remember what I told him.  I know that I cried the entire drive home repeating every word the doctor had said to me that day.  Without the surgery she won’t live long and I can’t promise you she will even make it through the surgery.  It was risky, it was going to be long and Elizabeth was very sick and very weak.  I had one month before the surgery, a “to-do list” from the doctor and I was truly scared.  God had a plan.

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