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.
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 ..
I hope this has the same impact on anybody reading my words. I hope it is a motivation to get angry and stand up and say this is not acceptable. I am tired of our emails going to a general inbox and getting canned replies.. Our government has the financial capability to save children..
The capability to heal children without drugs so toxic that their side effects kill kids like this 11 yr old boy who was at the time of his death was cancer free … so not counted as 1 in the 7 on May 31st
**my head is swimming and I was worried I would be wrong on my stats.. so I did a quick google.. and the top item was from the NCI. The arm of our government that provides.. or rather withholds funding from pediatric cancer.. “Although this makes cancer the leading cause of death by disease among U.S. children 1 to 14 years of age, cancer is still relatively rare in this age group.”**
Number one disease killer and rare .. that doesn’t seem logical to me.
I don’t have the answer.. but I am willing to work to find it. I want to work with other organizations .. to band together. This is proving to be harder than I would have thought. And that breaks my heart in a way I cannot even begin to explain … I get it.. I understand these organizations are all started like Unravel.. . because of our child’s time with cancer either as a survivor or victim. But I know with every ounce of my being it is the only chance we have. We just have to find the right way to do it.
I was so inspired being at the Lincoln memorial.. looking out at from those steps and imagining what the March on Washington looked like. How people banded together.. both those directly impacted and those that were just tired of seeing the inequality .. People uniting together can make a difference in this country. It’s been proven time and time again. I don’t know how to do it .. but these minds and passion united can figure it out.
Its been 20 weeks since she died.
and I have to admit. .. though it is so hard to do ..
I am tired.. I am scared I am missing moments with my living children for nothing. Spinning wheels and not making a difference in this epic battle for our kids..
in a lot of ways I feel like I am in this for the parents.. the ones that I want to prevent from living this never ending nightmare I am trapped in.
because I am just so sad.
35 weeks since I became a cancer mom.
.. that’s sobering. I haven’t even been in this world of cancer very long.. let alone one of the losers.. I don’t even know what made me want to do that math..
but I can hope it was her. Reminding me to give myself some grace. To allow myself to pull a flower from the grieving garden and breathe its scent.
20 weeks tomorrow and a new month begun today.. another month without her.. my internal countdown to the 12th of July is instinctively turned on. .
The longest 20 weeks I have lived.. but I know not the longest 20 I will ever live. They all will be the longest..
til its my last 20 weeks.
..until there is a cure