Time

Time.       April 2, 2015

The weeks have literally flown by although it also seems like we are standing still gasping for another breath.  Since learning of our baby Grace’s serious and terminal heart condition, we have travelled along a path that began with: shock, hopeful/ nervous positivity, devastation, denial, horror, despair, bargaining, acceptance etc.  It’s not a linear path, and once you go through a phase it doesn’t mean that you won’t revisit it many times.  When we made the decision to come home from the hospital almost a month ago, it was predicted that our timeline would be very short- days.  Those days have turned into weeks, and now the weeks are almost a month!  Going back to the doctors’ offices can be painful as we only hear the words of good people telling us terrible things.  Many of our doctors have tears in their eyes when they wish us well, but are completely unable to do anything for us.  

Good god she is the toughest little fighter, and it makes me angry that the world will never see her strength.  Her diagnosis is 100% fatal and the complications that have continued throughout her heart failure are also 100% fatal on their own.  Even if a tiny heart was available for the heart transplant she would need, she would be too sick and fragile to receive it. I am the only reason she is alive.  There are no safe and legal options to bring her peace, and I am sorry to say that the greatest miracle would be for her to never feel pain but only know love and warmth. 

   I do cling to words that I read or that bring me comfort right now.  So many of you have reached into your souls and offered profound support and empathy.  I do feel that by sharing some of the burden of our load, we feel a surge of strength.  So thank you for listening to our story or reading it here, and thank you for any tear you may have shed for baby Grace.  We ARE her loving family, and we WANTED her here with us.  These certainly are the moments that break God’s heart.

There comes a time when the world gets quiet and the only thing left is your own heart. So you’d better learn the sound of it. Otherwise you’ll never understand what it’s saying.

Sarah Dessen, Just Listen