Some girls are just born with glitter in their veins


A week. Well almost.

I keep looking at the clock over the last 24 hrs remembering…and so selfishly longing for that time again. She was in pain IMG_3761and hurting…I hated that.

But she was here…I could hold her and kiss her and feel her.

I loved that.

Am I forgetting it already?

Last night as I tried to write her “eulogy” I remembered the seizures. We knew they would likely happen…but there was no way to be prepared for that. When she had the huge one…the one that let us know she really turned the corner. That feeling. That fear…that horror. Its what my dream…


…are made of

I cant even remember last nights….thankfully. But I remember the feeling when I woke up. Telling Tony I was having bad dreams.  And the darkness creeping in my sleeping head.

I’m also scared of the dark. I have always been a bit of a weenie when it comes to the dark. But now its a real and palpable fear. Didn’t expect it and honestly don’t understand it.

One week ago this time. We had moved her to be all the way in my arms for a few hours. I was feeling almost euphoric. So connected to her. More connected to her in that time than I have ever been to another person. More connected than I was even during pregnancies.  I remember it…that I felt that way. But I cant seem to reclaim the way it actually felt.  Our bond grew more than a lifetimes worth in that bed. I am thankful for that…It almost feels like it was a dream.

But I miss her so much now. I miss that bond and the connection we shared.

And I was so sure I was ready…I think maybe I was ready.

But now I am not.

Do you know this is forever? I know I know…not heavens forever…

But this is the only forever I know…the only one my brain and heart can comprehend. And I am jealous of my parents…they will get to see her sooner than me. Luckys.

This time a week ago I was sure she was waiting for me to sleep. That she would allow me to be there but not awake. I didnt fight sleep. Remember I was so sure I was ready…that her dying was ok.

I finally slept, for about 45 minutes. And she was still here I was thankfully surprised. I am so glad I got to be awake and aware for almost all of her last 48 hours.

So why are these nightmares haunting me?

I took a quarter pill today before trying to leave the house. I knew it wasn’t enough so I took the other quarter. I knew I could leave…I did it. The medication did help. I had so many feelings and emotions I had never experienced. My heart pounding and head swimming and finding little ways to cope. I hope it helped Tony to know I am not completely falling apart. (yes I am) (no i’m not)

When I got home I went to our bed and grabbed pinkie in my arms and sobbed. Can’t even tell you why. Then I slept a medicated numb sleep.

For those asking I keep hearing from her drs/social workers. We only met them 3.5 months ago. My baby is more than just a lost patient to them…more than just a bunch of cells under a microscope. That I am more than a broken hearted mother..I am scared to believe that for some reason. But I do..I cant help it. And it gives me…I don’t know the word…but it gives me something positive.

Her story is reaching other drs…her story is making a impact. I am happy for that. She is gone from me…from my arms. But she lives on…through their research…through your donations…through my drive to make a change.

I ziploc bagged up a few of her things. I want to crack it open to smell it. But I’m not sure it will smell like her. I dont think my heart could survive that disappointment.

They finally came and got all of her medical equipment.

That’s it. That’s the whole sentence…because like most things right now I have no idea how I feel about it.

I just want her back.