One year ago we said goodbye.  After nine months of fighting we knew it was the end.  We took her to backyard to see her tree and her playhouse for the last time.  And we told Gracie.  How I never wanted to utter those words.

 

Three days prior I left my little girl after spending the night changing her IVs hour after hour with her by my side.  Work was calling and somehow we needed to find a way to fit it in.  She kissed me on the cheek, which by now was barely more than a slight breath to let me know that she loved me and was there.  I held her hand and kissed her back.  Little did I know that hours later she would slip into a coma before I would return and this would be my last time with her.  I guess you never do realize when it’s the end.  And by the time I came home that afternoon her eyes were closed and her breathing labored.  They never were to open again.

 

For two days we held her hand while feeding her with a tube, hoping that she would wake up and make that miraculous recovery that you somehow believe in until the end.  It never happened.  And by that fateful Friday, we knew it was over.  By then her breathing was intermittent and even her doctor started to talk about “making her comfortable”.  That was when we gave her permission.  Permission to rest, permission to leave, permission to die.  What I wouldn’t give to feel that one last kiss.

 

That night our families left and it was just us four.  As Gracie went to sleep we knew that tomorrow she would be an only child.  And for hours we sat by Elena’s side on the couch taking turns cradling her in our arms and resisting every urge to cry in case she was listening.  At times she would stop breathing, only to gasp a minute later as the tears filled our eyes and broke our hearts.

 

By 11pm we took her to bed for the last time.  This time there would be no taking turns.  Brooke slept on one side while I slept on the other, both of us too heartbroken to close our eyes.  This night we would skip the IV and remove the feeding tube.  They were all but useless at this point.  The time for miracles was at an end.  And now we prayed for her to stop fighting.  It’s a prayer you don’t know how to start and a prayer you never expect to make after hoping for the opposite each night for so long.

 

Three hours later she was gone.  After fighting sleep for so many months, Brooke and I drifted to sleep for mere minutes.  Brooke’s hand cradled her body, my hand caressed her cheeks.  And it was in those minutes she took her final breath – a breath that Brooke and I would never hear her take.  And alone we lost her.

 

Elena will always be my hero.  No matter how many years I live, no matter what I do, I will never equal her grace, humility and inspiration she gave us all.  People tell me this is God’s hand.  They tell me that she was always an angel.  To me she was my daughter and to admit her life was fate is to admit that our heartbreak is part of a plan.  All I can wish is for just another minute with her – faith can wait it’s turn.  Still I know she was much more than a 6-year-old girl and we were lucky to call her our daughter, if only for just that much time.

 

This is how it ends.  There is nothing more to say.  After 619 days, this is the Elena we know and remember.  The pages of this journal were at time too honest, at times all I could do to put in paper, and sometimes joyous.  And it was for Gracie.  They are memories that I know she will cherish and ones I will do everything I can to never forget.  But even this must end.  And so this will be my last page.  She has taught us about life, about love and too much about humility.  I only pray we are able to continue her mission.  She will always be my hero.

 

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After much deliberation and hesitation these pages will be published.  For 18 months I’ve answered every request to publish this with one simple response:  “It’s for Gracie”.  Nothing more.  But today I wonder if it could do more – if it could help one other child as well.  And so the journal will be published with a small publishing company committed to preserving every detail and memory just as it was without the threat of commercialization.  Ultimately it will still be for Gracie and no one else, but if it it might also partially fund that research that has become our new life’s work.  But just like the journal, it must be a person-to-person effort.  What started as a message to Gracie became a journal to family and became part of a much larger effort to help other children.

 

Some of the memories you’ve read before, others have never made it out of my computer until now.  Small entries on the web site often represented much larger ones that were either too personal, too difficult or not positive enough.  Some will be in the book, others are still too personal and will never make it to print.  But her journal as a whole tells the story of a girl we’ve always loved and will continue to love.

 

 

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