Some girls are just born with glitter in their veins


*****Before I journal I want to explain that we move the emphasis of fundraising over to

The reason for that is the website/foundation gives us 100% of the donations. Also people that donate can get a tax write off…We are trying to add to that site all the money from the gofund me site….I wanted to be sure anybody reading knew/understood why/what we are doing and that we aren’t trying to hide the money thats been donated!!****

she took this herself

she took this herself

Its so hard to say no to her. Tonight she wanted to go to the nutcracker…like right now. I am not sure if she is getting “spoiled” or she knows her time is fleeting so she wants to cram it all in.


She has asked for the snow and for me to teach her to drive a car.

I tried to find a nutcracker in the area that was happening tonight and couldn’t. But I did have my mom get tickets so she can take her and one of her little friends.

She is getting sentimental.

We decorated our house this weekend…even though we aren’t living in it again yet, we wanted to have the experience and it to be all ready for us. Jennifer found a nutcracker my mom gave her after she took her to the IMG_3042show last year. She slept with it. Even brought it to radiation with her this morning.

She wants to give all her stuffed animals to her brothers…(although this might just be so I let her have more).

And she wants her own room….

This is good for us long term. To move Nicholas in with Jonathan and let JLK have Nicholas’ room…It makes sense. I can leave her stuff up…I can go in there and be near her…after….

We are worried about how this is going to effect Jonathan…and how it will be for him sharing a room with her. But I’m not ready for it to be time to move her yet.

I rub her leg and feet every night and we talk. Tonight I noticed how DSC_0317much stiffer her right side is. I asked if she felt it (she does) and what it was like. (she couldn’t explain) This weekend we went to Gilroy Gardens. Tony had to carry her through the lines. I wonder what people think seeing him carrying her – a perfectly healthy 6yr old girl.

But she’s not healthy…

I have been talking with a friend of Jennifer’s mom. She lost her daughter  7 yrs ago. She used the words “still shattered”. Sounds about right. I am pre-shattered.

One day not only will my daughter be silent…but the rest of the world will be too. For other people love4jlk will be a memory…I will still be…always shattered.

I know horrible things happen everyday. Too many families lose children to cancer…or a myriad of other things…But this is my daughter.

IMG_3016These are my children losing their sister. DSC_0019






This is my husband who will walk her down the aisle as a flower girl instead of as the bride..

Its my everything. And I cant fix it.

Tonight I want to run outside and just scream. I want to empty out my soul. Run and hit. Rage and cry.

Help me.

I can’t. So I write.

Tonight its just scratching the surface. Tonight I can’t express through my fingers. Tonight it feels visceral and carnal and savage.

She can’t really hold my hand anymore with her right hand. Its limp and loose. I think I was almost used to it until I held her left hand and I felt it hold me back.

I want to beg her to never let go…I want to make her promise me. I don’t though.

I told her that even when you are apart, when you love somebody you hold them in your heart. I told her that even though I miss her so much when we aren’t together I am ok…

Mommy will always be ok.

Tonight I lied.