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Not very often does something stop me in my tracks, I mean STOP me in my tracks, and question the concept of hope.  Working with so many nonprofit organizations, hope is bountiful, is rich, is in the water supply more often than not.  Why else would individuals and groups of volunteers endure mountain peaks at sub zero temperatures, or long arduous runs, countless hours collecting bottles or living in third world countries for months on end?

For the sublimity of hope.

I went to a routine six month appointment with my daughter today expecting well, a routine appointment.  It was anything BUT routine.  We expect Sophia’s disease process to be unusual and expect the unexpected. However, I was not expecting the hour long conversation that would ensue.

Most of you know Sophia has been waiting for an MRI and a month ago we had the good fortune to have that MRI done at BC Children’s Hospital.  We were treated exceptionally well, all the staff were amazing and Sophia was well taken care of before, during and after her sedated MRI and CT scan.  We did spend a day or so in ICU after wards, but again, had a good experience.

Today we received the results of Sophia’s scans, along with some other testing she has been going through the last month for her kidneys.  Needless to say, the results were unexpected; her kidney function significantly impaired, and the MRI /CT scans showing a severe abnormality with Sophia’s upper spine, spinal cord.  Her entire spinal skeletal system is fused, even her little lungs show collapse, more than likely due to the condition of her spine fusion and her severe kyphosis.

We don’t know what all this ‘means’, and who knows if even our medical professionals really know what it all ‘means’.  But we do know Sophia is at risk within her spinal cord, in the same area Christopher Reed was injured.  And we do know Sophia’s kidney function is low, really really low and because of her complicated little self, is not a candidate for transplant.

On the drive home my mind wondered to all the issues discussed and brought me around to hope.  For ten years, Sophia has fought against the odds, our whole family has fought against the odds.  We have held on to ‘hope’, hope that Sophia would be ok, hope that the medical community would catch up, hope that our family would remain intact emotionally through this process…hope, hope, hope.

Alexandra Dumas said “All human wisdom is summed up in two words - wait and hope”

And today, walking into my home, Sophia singing to Barney I am met with the sublimity of hope…and if nothing else we have the sublimity of hope, that Sophia will be happy, our family will be together and each and every day, we appreciate ALL we have and that we have hope, for one more day…one more moment, as sublime as that may be in the midst of today.