Today I am filled with anger, disgust and disappointment. I know I am not alone in my reaction to the news far too many moms and dads around the country received today. The news came in an email from a man named Barack Obama. Though I am not naive enough to think he actually took the time to generate the message. My best bet, he took just enough time to direct someone in his office to draft a standard kiss-off to all us childhood cancer parents. It was his attempt at explaining why he vetoed our petition to turn the White House Gold for one day during the month of September.
To add insult to injury, the message used the very statistics we are railing against. Mr. President, and anyone else who still does not have a clue: the NCI is no friend to childhood cancer. And, if “progress” means that one in five kids won’t live five years past diagnosis and 85% of those who do will have at least one chronic health condition as a result of their treatment, the only thing that is clear to me is that we have grossly different interpretations of the word “progress.”
The icing on the shit-cake, he/she/whoever wrote the lame ass email was brazen enough to throw in a plug for the Affordable Care Act agenda. I fully support that initiative because it helps people with pre-existing conditions, like you…if, of course, you hadn’t already been killed by CHILDHOOD CANCER. However, that is not the point. This was NOT the time, nor the place, to advance his political agenda. This was his chance to listen. I can’t help but wonder what his stance would be if he and Michelle received the crushing blow that Malia or Sasha had cancer? Would that be enough for him to be a true supporter of children with cancer, rather than a football signing figurehead who smiles for photos? What is also disheartening is that pink light bulbs aplenty, needed to illuminate his tax payer supported home in October, have surely been purchased and are sitting in waiting. Because, you know, boobs matter more than kids.
The White House should be GOLD. But more importantly, kids with cancer deserve more funding from our government. How can we make this happen? How much more blood needs to be shed? Are people really not aware or are we just plain being ignored? I am doing my best to help spread the awareness. I feel like childhood cancer is being talked about, everywhere; but I realize that is likely because it’s the world I live in now. The bottom line: We didn’t ask for much, Mr. President. We simply wanted some fucking lightbulbs changed out for one day.
On the heels of Barack’s ballsy move to send the message (loud and clear) that he simply does not care about kids with cancer, The Empire State Building also DENIED our application to light up GOLD for one day in September. It will, however, turn Orange in honor of Nickelodeon on September 16th. Gag. Puke. Poop. (You should be ashamed of yourselves, Empire State Building. But, my guess is you are probably too busy watching Sponge Bob Squarepants to give a shit.)
This is an outrage and beyond insulting. None of this makes sense to me. I simply do not know why more people are not screaming from the rooftops…and/or jumping off of them…over the vast injustices in the plight of being a child with cancer.
That is enough for now, little man. Thank you for loving me even when I am saucy and sassy. Thank you for not giving up on me – despite the fact my efforts to carry on your fight are being met by brick walls and empty promises. (Don’t worry, Momma will never stop fighting your fight or honoring your legacy.) Most of all, thank you for being my son. Even though days like today make it hard for you to realize: you bring my soul more happy than sad and my heart more joy than pain.
Stay with me, sweet boy.