Saturday, December 17, 2011

Announcing our Fourth Facility & an Update

Isabelle's BFI book collection, still frequently used by her little brother Sebastian

Announcing our fourth facility - University of Missouri Women's and Children's Hospital in Columbia, Missouri.

Our family is making the emotional journey back to the hospital where Isabelle was treated and cared for in her final days.  The worst days of our life were in this hospital.  As much as we never want to go back, we do want to give back in thanks, knowing that she received the very best care possible.  We take great comfort in trusting the treatment she received and thankful that we don't harbor doubt or anger at the thought 'they could have done more' or 'they were ill prepared or trained in treating her.' I know it's not always a given to have that kind of experience.

We will not only be donating the collection of 25 children's books to the PICU library, but seeing for the first time Isabelle's bench that was dedicated to her in the hospital gardens as a result of the colossal generosity of our friends who gave in her memory.  We will also be reuniting with the doctor who cared for and treated Isabelle, which will be both emotional and a welcome opportunity to thank her again for the honest yet compassionate way she helped navigate us through those very dark, confusing, hazy days.   

A final update on Isabelle's diagnosis...  Perhaps the biggest challenge is accepting that we will never know why or even how Isabelle contracted a virus that, in her case, traveled to her brain and caused what ultimately led to her passing - meningoencephalitis.  In our hearts we believe she must have picked it up traveling on the journey to the states, simply by the number of people and germs in airports and planes, but there's no way of knowing.  Moreover, why did this virus - that presumably we were all exposed to - have such dire effects for her and not us, not others?  We may never know.  All we know is that this sometimes happens; however rare, it unfortunately happens.  We also have to work to accept that we may never know which virus it was that took her life, as it could have been one of hundreds.  They tested for some of the major viruses, for which she came up negative, but it is not possible to test for every single one.  The only thing we do know is that this virus caused swelling of the brain (encephalitis) and the outer layer of the brain (meninges).  And similar to a car accident, the outcomes of a brain infection can span the spectrum from those who walk away virtually unharmed to those who do not survive it - and everything in between.

We are home in Missouri for the holidays, with both sets of parents and extended family and friends around.  There is no easy way to get through this time, this season, this year...but we must continue to put one foot in front of the other and face it.  We're grateful not to have to face it alone, and thankful to have your support.