Month: July 2014

warrior

Warrior. Warrior mom. Warrior child. It’s a badge given to cancer families in this world I am slowly becoming accustomed to. It has always felt uncomfortable.. awkward for me… I wasn’t sure why. . I just have always known Jennifer wasn’t a a warrior. She was a barely 6 yr old girl who loved to hide from her Daddy when he came home from work and then jump out to surprise him…a little girl who snored like a grown man but always denied it was her. A brown eyed beauty who truly believed in the magic of a princess.    I don’t think any of our DIPG kids are warriors really.. .I think they are more like sitting ducks. Being picked off one by one. I am angry. I wrote awhile ago how it wasn’t a fair fight for her. And I realized this feeling is just an extension of[…]

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[…]

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[…]

deserve

I am sitting down with plans to write about our fluttering awareness/fundraiser.. but I can’t.. there are some other things that are weighting me down.. S0 I will do what I do.. I will write and see where my fingers take me.. I am changed now.. I literally feel differently now since it hit me that she has cancer. Writing this post. literally changed me .  It took over 8 months for it to truly hit me.. and it has just deepened my resolve to want to do something.  Its just a terrible feeling I am struggling with right now.. I just miss her. And I want to make her death count for something and I don’t know how to do it. I don’t know how to reach people.. how to make us/her and most importantly the facts get out there. I just want to make it so kids stop dying from this[…]

dreams vs nightmares

I am a jumble of stuff.. of emotions.. of thoughts.. Today I said to a friend “…taking care of 4 young kids.. ” then I stopped myself. I had to brace myself. Grip the edge of the kitchen counter to keep from doing what I wanted to do.. what my body was trying to do. crumble And then my friend said “you are. You are completely still a mom of 4 young kids.” And so we talked about it. How in so many ways my mind and heart are overcome with her more now than they were when she was alive. I fear sleep now. I had my second dream of her that I remember. .. dream.. i wish I so desperately want her to come to me in my dreams. But not like this.. I want her freed from the nightmare images. I want her different than the ones I can’t erase[…]

my heaven

Sometimes memories surprise me.. coming out of nowhere.. and sometimes they haunt me and I cannot let them go. The other day I was driving to the post office, I realized I was on the drive I took daily to take her to kindergarten. . I used to go straight at the corner to get to her school… this time though I turned right to get to the post office to open a po box for a company I never wanted to start. Its right across the street from where her remains are now.. Just waiting for us to get her to bury her. I imagined running across the street and barreling through the door.. screaming her name. I thought a lot about her Make A Wish trip and the guilt I have attached to it. How I feel like maybe she would have chosen something different. I helped them[…]

Fluttering means to me…

I am thinking about the fluttering fundraiser a lot lately. Read about it here. I am feel like its such a perfect representation of what we want Unravel to do/be. It raises awareness and funds and its something kids can help with. My personal goal is to do it 25 out of 30 days.. I know me.. I know our lives and I am sure there will be days I can’t do the moving and new set up. So if thats a concern for you too.. Just know, if you do 25 different houses over the month (and they all choose to give you a address to send the dragonflies for the 25.00 donation) then you have the capability to make a 625 .00 donation at the end of the month to Unravel, specifically to Jennifer’s fund at Stanford and the drs that have her tumor. And you will have[…]

Daddy… 5 months gone..

It has only been 5 months, but it feels like a life time. I find myself looking at pictures and old quick movies that I took on my phone of her and her brothers and I still can’t believe it; I don’t want to believe it. The fog has unfortunately lifted and now my family is smacked in the face of this reality. The day to day activities seem to be moving back to the norm (new norm) with me going to work and Libby and the kids having play dates and running errands. I don’t like the fact that it is moving in this direction. I feel like I need to be doing something different, something big, making a difference and all I am doing is going to work for 10 to 14 hours a day, come home and kiss the kids goodnight and sit on the couch until[…]

she has cancer

I miss seeing her in new ways.. I miss her little arms surprising me with hugs.. and the sweet way she would talk to her baby sister. All I have now is the pictures. Sometimes I drown in them. . Often after I write I look for the right pictures to fit in. It takes me a good deal of time to find them since I am always pretty sure what I am looking for.. and then I get lost.. In memories .. good and bad.. I look at the pictures in treatment. How beat down and tired she looked. I can see it so well now. Almost like the outline of death around her. At the time though I couldn’t tell. . somehow I was able to just see beyond the dark circles and just see my daughter. At first her eye was so jarring to me.. but at some[…]

Flutter

This idea came to me at my sister’s house. She had a neighbor whose house had been “flocked” with all of those pink flamingos on the front lawn. I thought what a great concept to raise awareness for pediatric cancer … Then it happened to me and I found out it could also be utilized as a fundraiser. I am proud to introduce… FLUTTERING Dragonflies live relatively short lives but live it to the fullest.. making an impression wherever they go. Jennifer’s nursery as a baby was decorated in dragonflies and they have always been our symbol for her. They seem to zoom all around until they are over the water, one of Jennifer’s favorite places to be.. they hover there.. wings fluttering.. You can’t help but stop and look at them. We are hoping you are able to help some dragonflies flutter in the month of september to make a lasting impression. For a $25.00 donation, we will send you a fluttering kit, but your time[…]