Wednesday, June 8, 2016


My memory has always been interesting to me. I was joking one day that I am like the Keeper of  the memories in "The Giver" I feel the memories, the emotions of my memories are always there. It is very difficult for me to remember a painful memory without actually feeling the emotions that I felt at the time. Its both a blessing and a curse I suppose. I am constantly told that I am too sensitive. That I let too much affect me. That I take everything too personally. I don't know if any of that is really true, all I know is that I can't help any of it. I feel the way I feel and I can't change it.
So with memories comes remembering dates. Knowing June 8 was coming has been gnawing at me for awhile, every single year it does. I would venture to guess that not one other person knew the significance of today. And I guess that is ok. But I have to get it out, maybe it will feel less heavy.

5 years ago on June 8, 2011 it was extubation day. After 9 incredibly long and difficult weeks Grace was breathing on her own, with the assistance of some oxygen via nasal cannula. She rocked it. It was an entirely different ballgame then. She spent the first 18 days of her life on a heart and lung bypass machine, mostly always paralyzed by medication so that her body could not try to do any work at all and finally after 9 whole weeks with a tube down her throat and tape all over her face she was free of it all. It was amazing.

I remember it all. Adam and I both went to the hospital together, and our friend Sandra came to visit and meet Grace. It was the first time we had gotten to see her since we moved from WA in 2007. Amy was her nurse that day, which made us so happy since she was her primary. It was going to be a very hot day so we had filled up the pool for the kids before we left, my mom was babysitting.
They extubated her in the afternoon and they warned us that sometimes it really doesn't last and they have to put them back on the vent. For me it was very intense. It was scary. She did awesome. Her blood gasses were perfect and she was happy and calm. We stayed for awhile and then ran out to grab some food. I remember that I felt better than I had felt in a long time. With the removal of that tube, a weight was lifted.

She was extubated and handled it amazingly and for the first time since she was born I believed she was staying. With that simple procedure, I let myself believe she was coming home with me one day. She rocked it and never needed reintubation except for when she had surgery to place her shunt and she was extubated pretty quickly.

I wholeheartedly believed 5 years ago that she was coming home and I got to keep her. I had no idea how wrong I was. I had no idea how many more obstacles and heartbreaks her life held and I was so naive to think she was going to be ok. My heart has been hurting so badly. How did she make it so long, when nobody thought she would but then she didn't get to stay? I miss her so much, I wish I knew what she would be like now.

That is how grief works, things that just sit beneath the surface and then come to a head and have to be dealt with. I love that I can remember her, and one of my fears is forgetting. But the memories hurt sometimes. It is just so bittersweet.

It was a day filled with so much hope. And I know that there is still so much hope. No not hope that shes going to be ok and come home, but hope that we have a place waiting for us with her. Hope that this life can still be beautiful even through all of this immense pain. Pain that hasn't subsided after all of these years, but rather that we have just gotten so much better at carrying with us.

oh pretty baby, I could look at you all day. First picture without tubes and tape.

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