Tag: government funding for childhood cancer

20 weeks

We got the mission statement completed. I should feel happy. I should feel relieved. One thing off my plate. .. But all I can think is 20 weeks. Tomorrow is 20 weeks. .. I have never been so sad. I never knew sadness could permeate to these depths of a person without destroying them. I hurt. I ache with such a fierceness I feel like I might be ripped apart from the inside out.   20 weeks.. why? Why did this happen? Why are we allowing it to still happen to 7 more kids today.. and 7 more tomorrow.  I have people from our glitter squad calling Senator’s offices to ask for the specific aide by title that we should write to about the lack of funding. And you know what some offices are saying.. No. We won’t give out there email address! I am so frustrated, disappointed, angry ..[…]

heavy and crushing

It is so hard to come home to a house without her. . Its hard to leave and feel like I am leaving her behind. .. It is hard to come home.. to hug my boys.. and have my arms ache so desperately for the one hug I will never have the luck of getting in this life again.  I know experts would tell me she is too little but I am so sure Charlotte feels the same way too.. The unabashed joy that washed over her seeing her brothers today was incredible. I couldn’t help but wonder if she thought they were also gone from her forever. It was a half giggle – half cry noise. Eerily the kind of noises I think I would make if I got my Jennifer back..                                  […]

rear view mirror

I don’t want to write tonight.. I don’t want to go there.. here. To remember where I was 4 months ago tonight. Steeling myself for the something so strong .. it dissolves steel. It started to hit this morning.. driving to a friends house I cried silent.. tears… but since then I have run from the truth that haunts me .. I cried angry tears and sad tears.. Relay for life is soon to happen in my town. Driving I saw the purple ribbons everywhere.. I wish I had no connection to it…I wish it didn’t impact me like it does. It made me feel stupid looking at them. . How I had been tricked into thinking that the money raised was for all cancers.. pediatric and adult when in reality it is unproprtionaly split towards adult cancer. 1 cent of every dollar goes towards pediatrics (PAC2) A worthy organization[…]

…but not really

Looking through the pictures for that last post really got to me.. About what pediatric cancer really looks like.. Its not just bald kids.. or swollen faces. Or feeding tubes and barf bags.. Often times there is something even worse that all of that.. being left behind.                 And then I get really angry. This is not the way its supposed to be. It is not the way it has to be. 60 kids were on that stage this morning. In just over a week. 8.5 days. That many children will die from cancer in this country.   7 a day. It is not rare. I am not alone. Far from it. Cancer is the number one disease killer of children. (national cancer institute) It is the number two killer of our kids. Number one is accidents.. which is such a broad term so[…]

plea

She ate a popsicle. She loved it. And she slept. A lot. She had one good 5 minute wakeful period and all 4 kids got to be together opening a gift bag that had been dropped off for them. It was bliss. And this is what I did. I have no idea if it will make a impact. But I mean what I said. I welcome any member of our government who would vote no to equal funding to come into my home. I am just getting started. . . my plea Please watch and share everywhere you can. And harass the hell out of people you know that don’t share. I appreciate so much how you are all in this with us, but I hope you stay with me . . . with us . . .even after my writing changes from our day to day horrors of loving[…]