… So much worse than you think.
It wasn’t a bad one…deciding to try to help create something that could make progress towards ending the course of something that killed my child, arguably not a bad choice. As I reflect on it today, not the right one for me and definitely not for my family.
It’s frustrating to say the least. I want to take action and you’d think of all people I would be able to do…I mean I have a fantastic reason, to help save other kids and families from our fate. For crying out loud, for Declan! I mean if I can’t find the motivation?! Unfortunately that fact has it’s land mines, it’s not about motivaton or want…those things are there in spades. It’s about fear. What if I fail again? Over the course of the year, I’ve tried to think of why…and what I can come up with is this – if I don’t try, I can’t fail. Truly insane I know, but there is protection in this insanity.
In spite of that, Journey 4 A Cure is thriving and I can say with confidence that it will not fail. It’s being led by some amazing people. Family and friends who have stepped up to build an organization to help all kids. My inaction was never going to pull down J4AC because of the will and determination of others.
At this point though, it is time for me to step away from my title as VP (I’ll always proudly be the Mommy part of my title!). I can’t struggle with these feelings of nothingness and frankly, it makes me feel bad to think and hear that people think J4AC success is because of me. I feel bad enough. I don’t need any more sources of bad feeling, intended or not. With the holidays upon us, I can feel the emotion starting to well up and it’s time (over time, really) to take care of my family.
Journey 4 A Cure is, and will remain, the pinacle of what I believe is good about making a difference in this ridiculous world of childhood cancer. I am proud to have my son associated with the foundation of this great organization. I hope to see you at future events, I know I’ll be there!
Oh yeah and one more thing…please vote on Pepsi Refresh to support the iPads4Cancer program, the difference being made in the lives of these kids battling cancer is immeasurable.
Everyday is an intricate maze of emotional landmines around our life since cancer invaded our family. Even more so since it stole Declan from us. Today I fell head first into a landmine. I would almost liken it to jogging along a path and rolling your ankle off the path. You know how you’re on your feet one second and then WHAM you’re on the ground. It’s shocking, and as much as you would think our lives have laid a protective groundwork around our hearts…it hasn’t. Declan dances in and out of my thoughts all day, everyday. Everyday…just like my other boys, he’s just not here.
So you’d think I wouldn’t be shocked when I get rocked by an emotional moment…maybe I’m doing a much better job of controlling my emotions, too good. Today I learned about another boy who was taken from his family. It isn’t that his life is any more or less important than every other child I’ve learned about since entering this insane world; they are all precious and the center of their respective universe…as they should be.
What was different? I read Tyler’s Mom’s words about his final hours and in those words I felt Declan. Felt the events in his final days that mirrored her son’s. Remembered the feel of his cool skin against my cheek after he left us. Remembered how amazing it was to finally hold him in my arms again, nuzzle his sweet body against mine…the way a mother should hold her 11 month old; except the little boy I love was gone. Oh he felt amazing in my arms but what I truly ached for, my sweet baby…was gone.
I’ve pushed away a lot of the raw feelings of those last few days because well, they are still so raw and really still so unbelievable. Today, I fell off the jogging path back into the thorns of August 2010 and my heart broke all over again. It broke for Tyler’s family because I know, I know what it was like to watch my son lose his battle with cancer…to see the newness of his young vibrant body fight against a demon so strong. Truly fighting to live but not having the means to be able to do so because of the poison that is cancer was overtaking him. I fell into the hole of helplessness again and remembered the pain of knowing there was nothing I could do to save my baby. My baby was going to die and then having to wait and watch as the demon overtook his worldly body; knowing death would mean peace for him but hell for me. And truly not until the second of his death did the realization of the horror of what it means to lose a child come into focus.
I fervently pray every day for the miracle that did not come for our Declan. I pray because I believe all children should be able to live their lives; but really I want to save another Mommy, Daddy and family from this hell. It is a hell in so many ways…the world seems “fine” from the outside and really it is on so many levels…we laugh, we enjoy each other and truly revel in the beautiful boys and family we have; but in all that joy is the hole of incompleteness.
We are a man down. We are the family gathering with that one special relative missing…always. Falling off the path. It’s a great run and we’ll get up and brush off the dirt from the last fall and enjoy the rest of the run but the sting of the fall is still there, lingering…reminding us of what could have been.