I almost never went to her room at night. I was too scared to wake her.. and after all I would see her the next morning.  No idea that it was a gift.  A privilege not a guarantee.

I do it every night now with my boys. I kiss them and I tuck them in again. And I whisper to them. About the depths of my love for them and what I hope they are dreaming about. I hope that those quiet midnight moments make their way into their hearts and their memories. So they never doubt the depth of my love.

There are no guarantees …. The promises you are supposed to be confident in telling your kids have been stripped away.

I will see you soon

I will never leave you

Mommy’s here.. its ok..

We all lost our innocence when Jennifer died. Because I know .. I know that I cannot say those things to them anymore with any  confidence.

I spent a little time with one of Jennifer’s friends. She is so much taller now. Her voice has changed. She wrote her name for me. It was no longer the little girl scribble .. nothing like the signature I have forever etched into my wrist. I know if that was Jennifer I would lament how she was changing.. telling her like I so often did to just slow down. How having her grown up was ‘hard on me’ Questioning why they had to grow up so fast.

I can’t. because she won’t grow up. Forever 6.

My surviving 3 lose out on that too. On the mom that wants to keep them little forever. The mom I was.. the mom I am built to be.. Now my desire for them is much simpler.

Just let them live. Please.

just let them live. please.

Its a crippling fear sometimes. Being apart from them seizes me up.. stops me in my tracks. I forget what I am doing in the middle of doing it because the back of mind is on overdrive.. Are they ok? I hate being apart from them.. But I know Tony and I need the time..

Suddenly as I was packing I realized I wanted to bring her. .. So I looked up the restrictions. I ended up talking to 3 people at the airlines… I had to go find her death certificate. I knew we had it.. I have never looked at it.  And wept as I pulled it out.. and cried openly when I read it..

Because I was wrong.. first I had pulled out her birth certificate.

I remember the day we got it. How happy I was to have our names listed as her parents. I remember being surprised that having a simple piece of paper telling me what I already knew meant so much. ..

This time again…but an ending of life versus a welcoming of it.  Seeing all the things I already knew in black and white.. was like a sharp blow to my gut. I collapsed.

Tomorrow we get to deliver a check from a incredible number of people, to a team doing research to really make a difference. Not towards a clinical trial but towards the discovery of drugs and delivery methods that can make the trials successful.

A guarantee I hope to one day be able to share. That one day no parent has to see the words I just did again. …

Age-6

Marital status-never married

Cause of death- brain tumor

Occupation- child

..until there is a cure..