“You need to tell us if you want us to stop.”

That sentence, uttered shakily by a doctor, haunts me to my core. It churns my stomach and puts a lump in my throat. Replaying it in my mind often fills my tired eyes with hot, stinging tears.

This doctor was referring to the continuous CPR that a room of 10-15 people were performing on our 12-day-old daughter as she lay in her hospital bed, fading fast from the coagulopathy that wreaked havoc on her little body after she developed a viral infection known as enterovirus. This was the 4th time in a matter of 3 days that she had gone into cardiac arrest. We knew, deep in our hearts, what this meant for her. But what parent wants to believe that? What parent initially accepts that as their reality?

When Ellie’s care team of doctors and nurses slowly emerged from Room 320 and filed out into the hallway to face us, their demeanor said it all. They didn’t have to tell us that her fight was over. We already knew.

I don’t have much memory of what happened next. Those are moments I wish I could put out of my mind completely. But I have jagged little pieces of memories that come into focus every now and again. I can’t make sense of it all or how it all flows together, but I know it’s there.

I’m usually someone who censors myself around others; I don’t want to be a burden or a bother to them. I don’t like to have attention cast on me and I avoid it at all costs. I never want to be the bothersome one. But, in the moments following the worst words I’ve ever heard, I forgot all about feeling that way. I forgot there was anyone else even in existence, let alone around us on the 3rd floor.

I screamed. I screamed as loud and as hard as I possibly could. As if the decibels of my voice could somehow have an affect on our situation. I wanted her to hear me; to hear that this wasn’t what I wanted. That I would do anything to take it all away. I wanted her to hear my screams that this wasn’t the life I wanted for her and that I was screaming to mourn what we once had. What we JUST had, mere days ago.

I lost all control of my body. I collapsed to the floor and my husband wrapped me in his arms and caught me. Our doctor wrapped us in his arms and fell to the floor right along with us. He had just watched the dreams we had for our daughter be completely wiped away like someone was erasing a chalkboard. Gone. Just like that.

I relive that all in my head every single day. Not all day every day, but it creeps into my mind at some point or another with each passing day. It’s a nightmare, a memory that cannot be escaped. It cannot be forgotten and cannot be washed away. Needless to say, that day, July 17 is one that I will always come to dread in my mind.

I’ve always heard that the anticipation of a dreaded date is worse than when it actually arrives. I thought this to be true of our daughter’s first birthday. It was much more of a celebration than I had thought, and I felt much more joy than I thought I would. We are lucky to have friends and family that wanted to make it so special for us, and for her.

The anniversary of Ellie’s death, however… that was not something I could have prepared myself for if I tried. I couldn’t prepare myself to relive that day. To recall where I was and what I was doing a year ago as each hour and minute passed by. I laid in bed in the dark that entire morning and the couch that entire afternoon. I cried and slept and cried and slept. I just felt that I was reliving the entire day, even though we were in a completely different place and time. But as these feelings made this anniversary different, it was also unlike any other anniversary that comes and goes for another reason.

It was the very last of the firsts.

From here on out, every birthday… every anniversary that arrives won’t be the first anymore. It becomes the second, third, fourth, tenth, twentieth, fiftieth. The thought of that much time going by without our baby girl… that much time going by without Emmett having his baby sister around… it breaks my heart all over again every time I think about it.

In a way, I feel that I’m grieving the last of the firsts… just as I am grieving the time survived without her. The more time goes by, the further away I feel from her. More and more time wedges itself in between the place where she existed together with us. That distance is terrifying. It’s haunting. And it just gets worse as the days, months and years go by.

I have found that I can provide temporary distractions for myself that take my attention away from this thought, but ultimately my mind always comes back to it. Because it’s now our reality and it’s something we must learn to live WITH. We cannot learn to live WITH it if we don’t understand it and we don’t feel it to the fullest. Of course, there is no right or wrong way, but the only way to continue on our grief journey is for us to go THROUGH it at some point or another. It’s never going away, and reminding ourselves of that can sometimes be the hardest pill to swallow.

No matter how much time passes by in this lifetime, our love for our children that we have lost will never stop growing. We will never stop feeling because we will never stop loving.

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