gold is the new pink.

Diddy,

September is nearly over. You know what that means, “Childhood Cancer Awareness” month is drawing to a close. I had big hopes for September this year. My ultimate goal remains that Gold:September will soon be as wide-spread as, and synonymous with Pink:October. For weeks, I have been in the middle of writing a post about all which has been unraveling surrounding my plight, and the plight of some of your favorite PaxLovers (LaLa, Erin, Dan, Meg, Allison, and Matt). Everytime I turn around, it seemed as though a new development has unfolded. In the end, I decided my energy would be better spent trying to make a real difference in this fight than to stop, even for a minute, to document my thoughts about how it shouldn’t be this hard to get people to pay attention to childhood cancer.

There are some special people, in high places,  who are paying attention…and joining our fight. One of the accomplishments I’m most proud of are the many different Proclamations that officially declared September Childhood Cancer Awareness month. Mayor Tom Barrett, City of Milwaukee, lead the way. Without pause – he declared September Childhood Cancer Awareness month in Milwaukee – in your honor. Following Mayor Barrett was Steve Ponto, Mayor of the City of Brookfield and David Ament; Mayor of the City of New Berlin; as well as a personal favorite of mine – Dan Vrakas, County Executive of Waukesha County.  

In less officious forms, several communities actively generated awareness as well. On September 20th, PAX Luminary bags lined the streets of neighborhoods all around the Milwaukee area. There were also several individuals who put a twist on the now infamous ALS Ice Bucket Challenge and chose PAX as their foundation of choice. In fact, close to $1,500 was donated to your foundation throughout the month. The timing couldn’t have been more appropriate. 

Unfortunately, there are some seriously disappointing events which have resulted from my efforts to keep Childhood Cancer Awareness on the forefront of peoples’ minds. These unfortunate occurrences have sent Momma into a tailspin. After much consideration, I refuse – simply refuse to give them any god damn air time – for now. For now, Sweet Boy. But as I always tell you, in time, “…shit always floats to the top”.

One thing I must give air time to is the refusal of the Empire State Building to light up Gold for one night during the month of September. The thousands of requests which have been made by desperate, yet hopeful, parents have been denied for some seriously lame ass reasons. The ESB lights up for pretty much every cause out there, but apparently childhood cancer is not worthy enough to be one of them. One night last week, it was lit green to promote the premiere of the  Teenage Mutant Ninja Turtles movie. Promise.

During your treatment, and nearly every.single.day.since, I felt overcome by the overwhelming notion that you were being experimented on like a lab rat. I don’t understand how you had the biggest team in the history of Oncology at CHW, composed of the smartest people across the land, and no one could come up with an answer….not a single fucking answer. It still burns my soul that your death certificate, which I will never open, but inherently know lists your official cause of death as, ‘undifferentiated sarcoma’.  To those who are lucky enough to remain blissfully unaware of the world of childhood cancer, “undifferentiated” loosely translates to: “We don’t really know what kind of cancer your baby has…and without knowing what we’re treating, we couldn’t identify a protocol to treat him. So he died.”

I refuse to turn the other cheek and accept that more strides haven’t been made in the world of childhood cancer. It didn’t take long to learn that childhood cancer seems to be a dirty little secret that nobody wants to talk about. But, if nobody is telling the story of childhood cancer, research is not being done because the funding is just not there. Without the proper funds, cures will not be found and kids will continue have the same grim outcomes. Until things change, I plan on fighting the only way I know how. The way that you  taught me – by being as spicy as possible.

Through my new network of parents, who belong to the “club” no one wants to be a member of, I started to hear the soft roars of brave parents who are trying to accomplish some of the same things I am – only to be met by one brick wall after another. As the month moved on, these soft roars became louder and louder. Eventually it seemed as if the entire world (at least in my corner of the universe) was entranced by this very important issue. A social media campaign was launched with the hashtag #empiregogold. Thousands of people started voicing their opinions on this matter to any and all Empire State social media pages. The outrage intensified when they noticed their posts about anything childhood cancer related, started to disappear as well as pictures of their children. It was as if, much like our beloved babies, this “dirty little secret” was expected to die and be buried.

The Empire State Building grossly underestimated the advocates of childhood cancer community. We are not merely promoting a Hollywood film, or a front-runner for a Democratic Convention, and we could give a shit about the release of Mariah Carey’s new CD. We aren’t merely advocates – we are parents. Parents who were forced to watch our child fight for his/her life…while we helplessly stood by and watched them slowly die.  We are parents trying to change a very dark world by giving it a beam of golden light to help ignite this change. We are simply trying to give other kids a chance so they can grow up to do the amazing things that I know you would have done.

I want a face-to-face with the heartless bastard who operates the ESB. I wouldn’t need, nor want much of his time. In fact, I’d simply ask him one question, just one:

“What if it were your child?”

Huh?

What’s that you say?

If it were your child, you would want the best awareness, funding, and treatments possible so you wouldn’t have to kiss your baby’s urn every night instead of tucking him into bed?

That’s what I thought you said.

Jackass.

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Close those baby blues and sleep tight lil’ one. If you need me, just call my name.

Stay with me, Sweet Boy.

xoox,

Momma

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jedi mind tricks don’t work on days like today.

Diddy,

Tonight, as I was brushing my teeth before bed, the doorbell rang. Standing at the front door was a strange man, who asked if he could borrow some eggs. Before I could answer, and tell him I don’t have butter, sugar, or flour – much less eggs, he grabbed me and threw me in the back of his rusty van that reeked of peed-soaked carpet. He bound my arms and legs and shoved a gag in my mouth. He drove and drove until we reached his rundown shack, smack in the middle of nowhere. As he threw me onto the cold ground, he told me I’d be his bitch forever and ever.

Ok. So that didn’t actually happen. But I conjure up scenarios like these to do my best  to put things into perspective. Because being kidnapped from my own home, shoved into the back of a smelly van, and forced to be a creeper’s sex slave would be just a little bit worse than the day I had today. My attempts to pull Jedi mind tricks on myself don’t work, because even though I logically realize that my day is better than someone’s who is held captive, or someone’s who lives in poverty-stricken, war-ravaged conditions, and is definitely better than someone’s who has the great misfortune of working at craft store for a living – I still hate every, single day here in this life without you.

Today was especially shitty because it was the first day of school. For most parents, this is an exciting time of year – marked by photos of their happy children, on the front steps of their happy homes. For most parents, the start of a new school year is a welcomed change. For bereaved parents, back to school bonanza does an exquisite job of displaying signs of torture everywhere. Over-sized backpacks, school supplies, yellow school buses, car drop off lines. Everywhere I turned, I was faced with painful reminders of more ‘firsts’  that you will never experience. It was one sucker punch after another.

It’s too much sometimes. By sometimes, I mean almost always. It’s especially challenging because, even if I tried, this annual occurrence is not only monumentally painful, it is one which I simply cannot avoid. I am a teacher, for the love of Jesus, Joseph and Mary. So not only am I smacked right in the face by the back-to-school torment; I have to actively participate in the god-forsaken event. Part of my job is to be the ‘welcome wagon’ to all the eager, awkward in the most adoring way, teenagers – with sun-kissed skin, donning their spanking new back-to-school outfits. But, behind every ‘welcome back’ smile there is a floodgate of tears threatening to tsunami my classroom at any given moment.

Everything I wished for is not. And the brutal truth of it burns. It burns new holes in me – it  burns in the old places, that I foolishly thought were repaired, too. It aches in places I didn’t know could ache. It screams in a pitch that reminds me of the wretched moment my life changed forever. This is one of the many realities of being a bereaved parent that no one talks about….milestones – that should have been – which rip open the scabs of buried grief and create ones of new grief – all at once, and all over again.

And, boy, do you fucking bleed.

I know you wouldn’t be starting school this year. In fact, I know your first day of Kindergarten wouldn’t be for exactly three more years. To be precise, it would be in September of 2017. But that doesn’t stop me from imagining what it would be like to be able to take just one picture of you starting school. A toothy grin, or a goofy face. A perfectly matched outfit…that I laid out for you the night before. Or, a perfectly mismatched one…that you insisted on choosing yourself. Blurry or in focus. Sunshine or rain. Our front steps, or the front steps of your new school. I’d take it. Just.one.picture. Because just one picture would have given us five more years together. Five more years to kiss your sweet head. Five more years to hear your voice. Five more years to tuck you in at night. Five more years to memorize every nook and cranny, and idiosyncrasy that make you perfectly and uniquely you. Five more years to watch you run wild and free.

If only I could walk hand and hand with you to your classroom, or as far as you would let me before you wrangled your grip free, and bravely reassured me, “I’m okay, Momma.” If only I could be annoyed by the lengthy back-to-school shopping list. If only I could have held back the tears of wondering how you got to be my ‘big Kindergardener’, as you excitedly rushed into the day ready to partake in the rite of passage children across the land look forward to experiencing. If only I could post your (adorable) picture on my Facebook wall. If only I could race home to greet you, with an excited smile and an enormous hug, at the end of your very first day of school. I would give my whole life to experience just one more minute. Just one minute longer is always and forever the cry of a bereaved Momma.

Every ‘first day of school’ makes me sick. And it makes me sob. I know most people have no idea these thoughts and feelings flood my soul. You never having a first day of school is a distant thought in their minds. It is far too ‘long gone’ to stay in the present. Especially in the frenzy of their beloved children’s back-to-school hoopla. For the rest of the moms, time moves at warp speed. But for a bereaved mom, time stands still.

So here I stand, the world around me paused at a screeching halt, with one foot in the life we once had, and one foot in the life I now have. With a broken heart and a tortured soul…wondering, imagining, longing for all what could have and should have been. Here I stand, with wobbly knees and tired, tired legs – straddling time and space.

And although my life is not as bad as it could be, it is still so very hard to live this life without you.

melted-crayon-1

I would’ve always packed you the very best lunches.

Stay with me, Sweet Boy.

xoox,

Momma