Tag: glitter fact

6 years

Tonight I should be practicing for a speech I am giving tomorrow. I have only gone through it twice now.. But I can’t seem to do it. Im not sure why. If its something swirling inside of me.. waiting for me to write and get it out.. Or if its too hard to do. Too hard to say the words out loud.. look at pictures of her…remember. Another cancer mom wrote about it .. wrote about how she doesn’t want to forget a thing about her son.. but also can’t bear to remember. I get that. How as the numbness is slowly wearing off that its hurts even more to allow myself to reach for her. Because it is just so devastating. But actually I think thats likely not accurate for me. .. not yet at least. Now the yearn is still so much stronger than I can even fight. I[…]

I am a blogger

A friend of mine encouraged me .. strongly.. to go to a blogging conference. Who even knew things like that existed! It really helped me to clarify my focus and my goals. I want to speak her name. Hear others speak her name and galvanize efforts to save kids from toxic treatments and parents from joining my ranks. 7 today lose their son or daughter to cancer. It was both scary and energizing to walk up to groups of people and introduce myself. I always tried to have them share their blog/story first since my seemed to be a conversation changer. Although that was hard.. I did what I always seem to do.. and I imagined what it will be like in 2 yrs. To say my daughter has been gone 2 yrs from a brain tumor no survival. .. it will hopefully still have a impact but not the[…]

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 ..[…]

…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[…]

answers

I woke up feeling like I was hit by a truck… weighted down and sluggish. Shoulda just stopped there.. but I didn’t..I went for a run. It was a crappy run.Oh and full disclosure since I hope to see so many of you at the 5k in May…I use the term run very loosely.. its more like a clumsy jog even on a good day! Then we loaded up to go to my nephews birthday party at Chucky E Cheese.. There was a bar next door to it.. Shoulda just gone in there.. I couldn’t handle being there. My sister had Charlotte and Tony was with the boys somewhere so I walked out and texted him that I needed to go for walk. I felt totally overwhelmed…this feeling like I wasn’t fitting properly in my own body.. like wearing a flip flop on the wrong foot. I wish I could[…]

jello

This grief. Its so different than I thought it would be. Its so different than any other grief I have ever experienced. One where the color can break through. . . This time it doesn’t. .. I have my doubt that it ever truly will. Tony and I talked about this on our trip. How is is not how we imagined it would be at all.. It is both easier and harder. In the past, with the worst life had thrown at me.. I hurt.. horribly at times.. but then would slowly rebuild… never able to fully return to the deepest point of that hurt. This time is so different. I am not just broken down .. I am dissolved. Wildly differently than I have ever experienced or could imagine… more like .. like jello I guess. I can be a solid, albeit a jiggy solid, when needed to be..[…]

friends

 ***Write down the time. Seriously right now look at the clock and write it down. **** This blog is my lifeline. My connection to her. Its been a wonderful way to keep her alive for me. At night I pour over videos ABCs and pictures of her. Getting to re-live our lives with her over and over again… I look through them until the right one pops up for my writing. It takes a lot of time.. not the writing. The looking through the pictures..the memories. Of her. Of my kids together. hearts beating. The relationship I feel with her through this.. .it keeps me going. .it allows me to forget .. . another day has passed without her… since late at night. ..     I get her again.   I think this connection I still have with her is what allows me to function.. to keep on going… to[…]