I can’t even count how many times I have been asked about my take on the Super Bowl commercial..you know the one.. Nationwide and the little boy. I’m not going to go into depth about it because all it is is my opinion.. but I will say the backlash from it scares me.
I have no idea how to penetrate outside my little world with the information I now know about pediatric cancer… because as anybody that has been trying to spread the glitter has learned people don’t always want to hear it. Its depressing and scary and they don’t want to be brought down scrolling through Facebook or during a football game.. or … well I’m just trying to figure out when a good time is?
See I am too far gone I think. I was the one who turned the channel on any St Judes commercials and those aren’t even sad! But the woman that did that.. the mom that made a donation and then turned away disappeared a little after Oct 28th 2014.. a little after it was my daughter that was diagnosed and I learned that more than it can happen to anyone.. it can happen to me. When I learned that a bald head and a smile is not the real face of childhood cancer.
it is darker. it is far more grim. And it is a never ending battle. .. Yet still with a constant shine of hope.. because kids are just that incredible.
So when I try to remember why I did that.. and how it could have been that I didn’t change the channel I simply cannot connect to it anymore. So I listen and I read about how upset people were for the myriad of reasons they share.. and I hope we as a greater community of pediatric cancer fighters and advocates. .. I hope we can figure a way to expand outside of our bubble.
Because sometimes it really feels like we are just talking to each other.
So if you are a advocate for pediatric cancer and the commercial put you off.. then add that knowledge to your arsenal .. as a way to help you get outside the bubble. To truly reach people that are not yet fighting for these kids…for the 46 that will be diagnosed tomorrow. Use it to help you reach out and truly connect to those people.
Maybe its personalizing things when you share them. Connect it to your kids and why it matters to you specifically .. I think I remember that I read more in depth when it was made personal to me.. If I knew the right answer we wouldn’t be in this place…
But for me personally the commercial was strangely comforting. I am a pretty straightforward kind of person.. confronting all that we are losing head on was easier for me than the happy commercials.
Sitting next to my husband watching the commercials about fathers and their kids.. especially the one where daughters of all ages call for their Dads..commercials that were supposed to be heartwarming..were anything but..
For me that was what was heart wrenching. The losses we live with depicted in a positive light, the light they are meant to be lived in made me want to run away and hide from the underlying truth for us.. that we will never get to watch her learn to drive or pick her up after a bad teenage choice or see her in her wedding gown.
And at some point during this game I stepped away to take a phone call.. from another DIPG parent looking down the barrel of progression wanting to know about tumor donation. The angst in his voice.. a level of pain I somehow miss, because I know it only gets worse.
For me there is no respite from the realization of all we are missing out on.. Both as a mommy to a little girl twirling away in heaven and as a founder of a non-profit hoping to changes the grim realities I am struggling to make people absorb.
We went to visit Jennifer today.. by request of best friend. He had a special rock he had painted for her and really wanted to bring her. We walked around the cemetery and as they often do the boys asked me to read what the headstones said. I usually just say the persons name and pause for just a moment afterwards.
Its always a surreal experience for me. Sometimes I look at them and shudder at how long some people live especially 100 years ago.. Its scary to me. At this point in my life I really don’t want to live well into old age. .. And sometimes I look at them and wonder how long its been since somebody visited. ..and my heart hurts just a little imagining that one day for Jennifer. Right now every time we go we see a new painted rock somebody has decorated and left for her. We all really appreciate it.
I know it won’t last. I haven’t been able to tell the boys that quite yet.. but I guess I should probably warn them at some point. They all said hi to their sister and then headed off like they always do to explore a little without me. It gives me a few moments to be alone and talk with her.. or just stand at her spot.. where her name is forever carved and watch her siblings run.
Somebody had come…
Visited a child that’s been gone for over 80 years..
And my heart leapt forward. ..
you matter sissy miss
you will as long as i live
i will fight to make people see
that this didn’t have to happen.