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 same sobering one it does now.. I won’t be earning an almost automatic respect/moment of silence in her honor.
Although it was hard to say over and over again.. to see the look of disbelief and people that are so gifted with language struggle for words to say.. it will be harder when it doesn’t have the same blow to them.. Because I will always carry with me a shadow of disbelief and struggle with words…
I got so many hugs and heard so many other stories of heartbreak.. and many of triumph.
I was ballsy and brave… yet broken beyond belief
The most common response was I don’t know how you are here.. how you are doing this.
.. the truth..
I’m not so sure I know either. Except that I was and I did..
Something bigger than me was spurring me along.. silently whispering in my ear that this was where I was supposed to be. ..giving me a presence and strength I didn’t know I had. One of the only times I cried publicly was sitting at a table and a woman I was with asked about my tattoo.. girl on fire started playing. Jonathan’s song for his big sister..and so I remembered..
.. I did it for them. For my 3 surviving gifts.
I promised myself .. very early on in this – early on – 9 months from diagnosis tomorrow.. its still early on. .. So I will change it to those first days – those first days that I promised myself that if I was ever mother to a child before a tumor board.. a child with a oncologist I would be freed from the most crippling of my guilts..
I didn’t do anything to fight for change in childhood cancer, to find out the truths, or as my expanding village has dubbed it, “the glitter”. After such a struggle to become a mom.. her mom.. If I had invested the same energy for those 6 beautiful years.. maybe.. just maybe she wouldn’t be gone.
I am their mother still. And I push through my days.. sometimes fighting against an intense longing for the freedom of sitting behind my computer screen and releasing. .. I smile and we laugh and I take care of them.. good care of them..
I do not rip apart in front of them. I do not show them the intensity that this darkness can often times hold.. I take care of my Jonathan. My Nicholas. My Charlotte. .. all while desperately missing my Jennifer.
I take care of them.
That’s why I was there.. that’s how I was there.
… because I was taking care of them in the way I failed for 6 yrs to do for her.
The pen is mightier than the sword.. I am a blogger. a writer. And with that .. comes a weight and a strength and now I believe a chance to cure our kids.
…it will always be too late. It will never be enough..
But damn-it.. we just might do it.
…until there is a cure…