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 terrible disease. .. I just want to rewind 9 months and already have a cure.
Instead tonight I got a tattoo of the ring she gave me.
I will pack to go to a blogging conference I am leaving for tomorrow instead of preparing to go to the garlic festival with my family. She loved the garlic festival. Everything about it.
We let all the kids do one activity. She would carefully weigh all her options. But then always choose to do face painting. Last year we asked my nephew to be Charlotte’s god father. It was such a fun family day. I was so proud to walk around with my amazing family of 4.
We will still go. Not as our usual tradition of Friday but Sunday this year. Saturday my boys will run a lemonade stand with some friends. To try to do something to find a cure for this monster that stole their sister and their innocence.
As I go through my nightly ritual of looking up pictures I will sometimes come across one that moves me to send it to people. The other day it was a little girl and Jennifer. I was just swimming along the top of my despair.. My first thought was how young the other girl looked in the picture compared to now.. and that Jennifer hadn’t changed..
.. I was immediately plunged under .. deep into the depths of my despair. ..
She hadn’t changed because she died only a few months later.
I somehow can forget looking at those pictures, of her so full of life.. smiling at me in her bright orange t-ball uniform.
I forget how soon it was we learned of DIPG.. and what a port is… and learned of the proper dosage of morphine for my barely 6 yr old.
In that moment I hadn’t forgotten she had died.. I simply forgot how quickly we went from the best time of my life.. I knew it then and wanted to freeze time last summer.. (remember with me).. I saw my little goofball.. and I forgot. I looked at the picture and thought how little my Jennifer had changed how versus her buddy..
Remembering that.. remembering how quickly she went from the girl in the picture to the one in a casket.. made me also remember how she suffered. How I can look back now and see how the life was pulled so slowly from her.
How she went from healthy .. to slowly dying …
to actively dying..
And I can’t do a damned thing about it. I couldn’t then either.
So I will try my best to help prevent this from continuing to happen. I am not sure how to best go about it. But I am dedicated to it.
She didn’t deserve to suffer the way she did. My boys didn’t deserve to have their childhood stolen by pediatric cancer. My husband doesn’t deserve to cry for his lost daughter.
So I will ask one more time. Please join me in spreading the glitter. Because glitter is like knowledge .. it sticks with you. And once we know better we can do better. I truly believe most people out there just don’t know the facts.. I certainly didn’t..Order a fluttering kit here. If you can’t afford one but want to be involved then let me know and Tony and I will buy one for you. Get out there and do it for one month. Raise money and awareness through a donation of time and effort.
I don’t deserve this either. Its so hard for me to allow myself to feel that. This isn’t my fault.
I don’t deserve this and neither do the 7 parents that joined my ranks today.
I miss her.
I deserve her.
…Until there is a cure..