Some girls are just born with glitter in their veins


I just grabbed my husband outside of her room. To remind him how much I love him and how proud I am of us. . and how we as a couple are muddling through this.

And then I said this is the easy time.

We both know it to be true but after a night like tonight. With 2 headaches needing morphine and violent throwing up. . . its hard to believe.

When she is gone. When we have the 3 other kids full time.. . 3 kids too young to understand. . That need us and are normal (or at least our new version of it) children. That’s going to be the real test of us. We renewed our vow to each other tonight to cling to each other fiercely.

DSC_0561As I blog in the dark next to our daughter I hear him in the kitchen.. cleaning up and putting away dishes. He is amazing. I am lucky.

Even in that he allows me this blog. And to reach out publicly. He is not like me…he is much more private.  . I do wish sometimes he had a blog.. that way I could peer into his head and see what all of this looks like for him too.. .But he sees the importance in it and I think most importantly my need for this. My need to make a impact and right my wrongs.


I know I didn’t cause this. But had I done more. Had I not muted the tv or turned the channel for St Judes commercials. Had I really paid attention . . . Had I done more before. . .

well maybe we would have found a cure.

I’m sorry my love.


There is a sound.. . .That sound.

When she is about to throw up.

A deep gurgle and bubbling. A rumble beyond her control . Then almost a  burst and explosion of liquid.

Its so different than any other time I have heard one of my children get sick. With her celiacs she has vomited quite a bit in her little life.. But this noise. . .the depth and power and pushing of it is different.

I wonder if its like that for all kids at this stage??

She is getting so weak. We have to use all of our bodies to prop her well enough so she doesn’t choke on it or simply fall backwards.

I want to keep the smell of her…but its no longer the honey sweet smell. . . already I find comfort in it. . this new mixture of smells that is her.

She ate again. . but then was ill a little while later. So now we wonder was it the food? Or just tumor?

Always doubting and wondering. . . things change hourly sometimes it is so hard to keep on top of it. So hard to stay ahead of her pain and nausea.

She needed me again tonight. My touch and scent soothed her. In the simple act of needing me she gave me such a gift. The feel of her hand pulling on mine making me wrap my arms tighter.

thank you my love.

She is gorgeous still. Beyond words beautiful. We teach our kids your actions and who you are make you beautiful or ugly. As she gets weaker. . it shines out even brighter.

I found a bruise on my inner thigh today. I couldn’t figure out where it was from. Then this evening snuggled up watching a movie I was very aware of it. And it hit me . .

I am bruised from her hip bone. It sticks out so far its given me a bruise.



oh my sweet baby.