Tag: working with other organizations

average

I had a phone call with one of the aunts of Dannys warriors. She is… they are… amazing and I think they are poised to do good things in the fight against pediatric cancer. . I heard in her a joy.. a hope.. that we lost 5 months ago. A piece of me that I miss. The part that believes in miracles. I remember it though and I will hope that they find their way to that miracle. We talked about how it was for each of our families .. 9 months 4 days ago for them and 9 months for us.. 9 months from the very last birthday that we will ever get to celebrate her turning a year older. 9 months since we learned of DIPG. . and that some childhood cancers offer no hope. 0% survival. 9 months. The average amount of time a child with DIPG gets to[…]

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 ..[…]