A year ago today, Jeff, Blake and I sat in an exam room at Seattle Children’s Hospital. I was holding my sweet baby girl as she was falling asleep. We were alone, waiting for the doctors to come back in. They were going to tell me something I already knew. They were going to tell me that my perfect, precious and beautiful love was going to die.

March 9, 2016 is the day my heart broke, in a way I never imagined it could. I heard the words, “There is no treatment and there is no cure. It’s not a matter of if she will die; it is a matter of when.”

We drove home in the pouring rain. It’s hard to find the words to describe what that was like. I’ve described it to some as feeling like  you’re someone else; as though you are living someone else’s life. I could feel myself breathing, but I was sure I wasn’t me. This could not be real. Not my baby; not my Blake. Not her. 

I told myself these things over and over as we drove. The only words I remember saying to Jeff, on that ride home, were “How could this happen? Why would this happen? What did we do? What could she have done? How do we protect our baby?”

“This can’t be real.” I thought that. I said that. Over and over and over.

I pleaded with God, or any other powerful being, that I could think of. I pleaded for the doctors to be wrong, for this to be some kind of horrific mistake, all the while knowing, as her mother, it was not a mistake at all. It was the answer to the question I had been searching for the answer to, for almost her whole life.

I didn’t want the answer anymore.

I pleaded for God to take me instead.

I didn’t expect the approaching date, a year later, to be as difficult as it has been. That’s grief for you: You never know when or how it will come around, trying to drag you further down, deeper and deeper. Even today I can feel myself in that exam room. I can feel the weight of Blake against me as the doctors spoke. I can feel my heart literally breaking- shattering- as I held her.

I don’t have to try think about that day. It is always with me, always there. I relive it all the time.

March 9, 2016 will always be the day our world imploded. It is forever marked as Blake’s diagnosis day.