Some girls are just born with glitter in their veins


I lied. I want to blog for me. I want to remember. . .


Because even the horror is her. . .and because she brings her beauty to it.

And because I want to remember the anguish.

To stay angry. To stay focused on what i have called my “after plans”.

The thread. My thread. Her thread.

Our thread.

Last night I came to bed and she was sprawled across it. Please please don’t let have been scared and alone.

She was up every 15-20 minutes begging to go the bathroom. We think its a spasming side effect of one of her meds. I gave her a bigger adavan dose and prepped morphine. I was probably 30 mins from waking Tony to transport her.

I felt hopeless. And helpless.

I tried to calm and focus on a workable solution.

. . . still cant believe she is dying of a brain tumor and its pee thats our biggest issue. . .that pee is the thing making me wish her to sleep through it instead of being so aware.

You just can’t plan for it all.

I am confident I have advocated well and firmly. That I made sure we were two steps ahead of potential problems. This we didn’t see coming.

I realize with fear what I am sure all parents who have gone before me also realized. . . in the same desperate way. . unable to fix the problem.

There really is no such thing as comfortable with cancer. There is only as comfortable as possible.


And even in her suffering state. I am not ready to let her go. I feel terribly guilty for that.

My last ditch attempt was to try to her to pee laying down in bed. I laid a towel an wrapped one arond her.

it worked.

Twice. The send time we both slept through it.

The first time I held her on the toilet last night she changed positions. She uses her good arm to throw her bad one around my neck to hug me.

thank you Jennifer

She told me. . . ” I love you Mommy”

all i said was “i know” . . .

because I really truly do.

She said it again. And asked me to stay with her.IMG_3764

I promised to. To not leave her except to make meds, pee and nurse the baby to sleep.

Dr. Partap said often they wait for the alone moment to die. For the parent to pee or sleep. I think she just might gift me her last breathe.

But i am trying to prepare for it not to happen.

Every time i come back to her my throats seizes. . .

. . . and then I watch her inhale.

Today she woke suddenly. Wanting to do something. By the time we settled on coming to the couch she was back asleep. But she asked for Daddy too.

I watched the sun grow outside the window with them.

…and now I simply watch her. . .