Tag: glitter

eye roll

Thanksgiving one year ago we invited the first media outlet in to film our family and our story. I barely even remember Jennifer looking like that. So big and round in her face. She hated that. Hated so much how the steroids changed the way she felt and looked. I hated it to. A constant reminder of the monster inside.. that we were powerless to stop. .. or as it turns out even slow down. I am quoted to say “I don’t know how you go on.. people do it.. but I can’t imagine it. .. I can’t.. We watched her today with her cousins.. I think about next year, will we be able to come? I .. I don’t know. “ How can I still say that. That I don’t know how people go on.. I don’t know how I am going on… But I am. I don’t know[…]

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 ..[…]

DC getting to it

Finally feeling the way I wanted to about being here.. Walking down the street today a young girl and her mother approached me because of my Unravel shirt. She asked if we were here for action days. They also happened to be here from California! The girl is a 16 yr old survivor who brought up a great point. She survived childhood cancer but almost died from side effects from the incredibly toxic treatments. If she had her death would not have been attributed to cancer.. another statistical loophole.. We walked and talked for at least 10 minutes. When I shared our story.. of the loss of our Jennifer the mother stopped in the middle of the sidewalk and embraced me. A hug that spoke a thousand words that language can not allow. .. of hope and despair.. guilt and gratitude and simple understanding.. I absorbed the relationship between this[…]

…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[…]

winning

Rarely do I type and erase.. but tonight I have been .. I’m not sure what exactly is holding me back.. I guess mostly fear of being judged.. or misunderstood. But as I start to think about the words that want to come.. I cry.. so I will share my truth. Sometimes its hard to accept the good being done for us… since it means the worst has happened to us. And I just don’t want it to be true. I shared on friday that Wes from Coast Range wore a Unravel / love 4 jlk shirt the first day of the CrossFit games. It meant a lot to me..At first it was mostly just excited and touched .. but then it hit me yesterday.. The why. The why of all of this .. because my daughter is dead. and I am so sad. I don’t want it.. I would[…]

danced

I did it. I think I did ok. Most importantly though I really enjoyed it.  For me this was a bit of a test to see how I did with public speaking and if I did ok.. did it feel right. ..? My goal was to hopefully make a change. I am so grateful that the ladies that run Mamas Night Out were willing to take a chance on me and giving me the mic.  It is my sincere hope that I am awarded the opportunity to speak and share again .. in any capacity. So if you have a venue or gathering in which I could be of help… or that I could speak to share, not only our story but also the truths of pediatric cancer funding and statistics or other portions of our story..please please let me know. Tony and I are both feeling like this is[…]

day after

My thoughts are jumbled.I am so tired.. circling the drain… Milk in the pantry cereal in the fridge kinda day. Yesterday just totally drained and exhausted me. .. .dehydrated me. I could have stayed in bed all day. But I know thats not fair to Tony or the kids. I got up and realized I hadn’t yet opened the package I got from Amazon the day before… so while trying to seem happy with the kids I did…I shouldn’t have. It was Frozen. I had pre-ordered it for Jennifer. .. and me. We were supposed to snuggle and watch it. It was going to be a great surprise for her.. I thought I had cancelled it. .Those sudden things that knock me over are hard. A friend came over today. Her boy ran and played with ours. That made me happy. Apparently Jonathan met them at the car. No hi[…]

Glittery knowledge

Music. Today was a day of music and songs. Both things important to Jennifer. She made up her own songs and she loved to sing along with ones we were listening to. We have been continuing the sticker charts for the boys. Even though last night wasn’t a stellar performance we took them out for breakfast this morning since they had already filled theirs up. We didn’t give them any for last night (but we didn’t point that out either) we felt like showing them the reward for earning a “going to bed” sticker will be a good motivation. We went to Black Bear… the same place Tony and I went to the day I broke down in the parking lot.  We took my car. The first time since she died we have all been in it. Jonathan didn’t want to.. well .. because daddy’s car can go faster… Buckled in he[…]