help

World cancer day was yesterday.

The old me. . .

I would have posted about it. Said how horrible cancer is. Read a few blogs or stories. I would promise to do “something”….tomorrow or after the kids get up from naps.

Feeling a bit cleaner and like I did my part.

. . . and that would have been a lie.

This is not to put down anybody else. I know for many other people yesterday was a spark to action. But I can tell you for me. The 4 month ago me. . . it wouldn’t have been.

The new me. . .

I live it and will continue to live it. . . as is so well expressed by a father and husband of a new found friend. . . here. The new me is making preparations for when my daughter dies. . . to get her tumor donated to the hospital and drs at Stanford that want to find a cure.

I actually *think* I am not a fan of days like yesterday because I think they provide a bit of a ” get out of cancer advocate jail free” card. Everybody has been impacted by cancer on some level, it is a monster of epic proportions. .

So today. . . day after cancer day. Lets call it do something about it day. Write to your legislature. . . do it in pink for breast or purple for survivor or grey for brain or gold for kids. . to keep a color theme alive.  But lets really galvanize the efforts…..

Part of “The Thread” as I see it is this. Lets get all these grassroots efforts together. Enough threads can create amazing things.

And please know. I know how many wore pink for my daughter yesterday. It meant so much. Actually it MEANS so much….but just don’t stop with the sunrise.

*******

Jennifer got mad at me again last night. Pushing me away the same way she has been Jonathan. Its absolutely devastating. We have had to up her methadone and do adavan more often. She does not like the way they make her feel. She blames me.

Being a mother is the greatest gift.

You are their first friend, their first teacher. . . you are supposed to be their protector.

. .  and you are always their punching bag.

She is mad. It comes out on me.

I get it. But its devastating.

When did she lose her smile? I can’t really be sure the last one.

I dont want her to go. . . but what kind of life is a 6 yr old living void of her smile?

I have always lamented the not knowing of my childrens impending lasts. Not knowing when the last time they will want a tuck in, or fall asleep in my arms……

I am losing so much of her piece by piece.

……day by day.

Today she sleeps next to me. A drug induced fretful sleep. And she wakes to vomit up water or bile. She tried to speak but can’t find the vocal strength. And then sleeps again.

I think its just the drugs right now…..and so selfishly I hope it is

My sister gave me a cuff bracelet yesterday. It says “God doesn’t give me anything I cant handle, I just wish He didn’t trust me so much.” quite true. The inside says “fuck cancer”

So very true.

She noticed it and I read it to her swapping fuck for “cancer sucks”. She tried it on and settled on pinkie wearing it.

For her even more true.

I wish I knew what it felt like to be her. So I could do better and be better . . I always wish it was me . … But sometimes I even wish to die like she is. To truly understand what it is like for my daughter.

                              My boys just came for a visit. And to play in snow in Gilroy. They came in. Jonathan taking the lead showing Nicholas how to be calm and quiet. Nicholas left quickly and Jonathan sat by her bed…then on her bed to give her just one hug mommy.

I took Jonathan aside for another talk. About all of this. Talking with him more about how her body is not working well anymore and that’s why she is so sleepy.

 

 

We shared some gluten free watermelon candy and talked about heaven and God.

If you feel pulled by this blog and my words. If you feel helpless…

help.

Not my child. . .for my baby its too late.

But the one being told today that they have cancer.

Our power to stand up to cancer is in our power. To control how OUR money in the government is spent.

So I ask you now to write….and keep writing… share my video or my words if that helps. . you can even tweet through this site.

http://www.opencongress.org/people/zipcodelookup