The Balancing Act

Balancing

I feel as though most things in life are a balancing act. We constantly find struggle to meet that middle ground when it comes to all sorts of things. From balancing work and family, kids and spouses, to health foods and sweets…there are many parts of our lives that require balancing, and yet so many of us struggle to find that gray area. While some balancing requirements are obvious, others become acquired when you’re starting something new. For me it was when I began advocating for our kids in the world of childhood cancer.

I started Natalie’s Facebook page back in January 2013 with the thought that I’d be able to not only keep friends and family up to date on her progress, but that I’d also be able to educate them (and hopefully many others) along the way. The more and more that I learned about childhood cancer and its lack of funding for research, the more I desperately wanted to pass this vital information on. It didn’t take me long to realize what was well received on Natalie’s page and what wasn’t. For example, the more truthful I was in regards to the harsh realities of childhood cancer, the less “likes”, comments, and overall views that I received, not to mention the more page

UN-likes that I noticed. I understand that generally speaking, people don’t tend to “like” upsetting posts…but I’m referring to any real interaction at all with the message (having a public page allows you to see detailed stats). Anyway, I quickly recognized that I needed to tap into my editorial background and carefully balance the information that I was sharing on Natalie’s page. I discovered that about once a week or so it’s okay to inform people when yet another beautiful, innocent child dies from their cancer, but the post to follow needs to reflect hope in one way or another. Too many negative posts in a row and your audience will decide to get up early and leave. I know what many of you are thinking, well then who gives a shit, screw them…as they say, if you can’t stand the heat, then get out of the kitchen. While I think in most cases that euphemism makes perfect sense, to me personally I don’t feel as if it works in this particular case. If I scare too many of the customers away from my kitchen, then who besides myself and my coworkers am I left to serve? What good does it do if amongst the childhood cancer community we’re only talking to ourselves?

You see I need you all, to listen, to like my posts, to share things…we all need YOU. And whether you want to believe it or not, YOU need us too.   Keep in mind that as of August 15th 2012 I had a seemingly healthy child too, as did my 40,000+ fellow parents whose children are currently in treatment today…that is until we all discovered that our “healthy” child had cancer. What you all need to keep in mind is that we’re not “talking” to hear ourselves speak, we’re not after those “likes” because we want to win some non-existent popularity contest, we’re doing this not only for the sake of our own child, and the children currently fighting, but for all of YOURS, not to mention your grandchildren, your nieces, your nephews, your best friend’s kid…you get what I’m saying. So you see, if I’m ever going to get through to you, and hopefully thousands more (eventually), I can’t lose your attention. So, I will continue to balance Natalie’s page to the best of my ability with the hopeful, the bad and the ugly…and all that I can long for is that you’ll keep listening, learning and sharing these truths with your own friends and family with the hope that enough people will stand with us in our fight resulting in a unified demand for more funding in the childhood cancer research division. There HAS to be a better way of fighting childhood cancer then saturating our children’s small bodies with life-threatening poison and radiation…not to mention all of the children who require having limbs removed for the sake of their survival.

While it’s important to not scare the non-cancer parents/people away from the ugly truths that is childhood cancer…I also can’t be too optimistic about it all either or I’ll upset/insult my fellow cancer parents. For those of you who don’t know what I’m talking about when I say this…I’m referring to the annoyance that many of us cancer parents feel when we see someone or a group, etc. making too light of childhood cancer and all that our children go through. Many, myself included, will use the example of how childhood cancer is much more then the cute, beautiful, little bald seemingly happy kids that you see in a St. Jude’s commercial (and that is NOT a stab at St. Jude’s or those amazing kids in any way, shape or form). We cancer parents often discuss how we feel that by marketing to the masses with the smiley bald head, it’s not only doing our children a horrible injustice in regards to the true suffrage that our kids feel during treatment, and to the children who die, but that also this positive spin feeds into the general publics perception that childhood cancer is not that bad…that it must have come a long way with treatments (even though it hasn’t). Trust me I GET these thoughts as I’ve discussed and felt them myself hundreds of times myself…I GET IT!

But on the flip side, look how successful St. Jude’s is at securing the annual funds that they need in order to keep their amazing research hospital going. Clearly going the more delicate angle is working…as they say, you catch more flies with honey. If they showed only the hard to look at imagery, the hopeless sad side that we often feel and see in this community, then how much do you think would really end up getting raised, how many people would really want to help? I’ve had many people flat out tell me that if something’s too heavy, then they will change the channel, or they’ll scroll quickly past the post. So there’s something to be said about taking the more approachable angle. I’m not advocating that on a regular, everyday basis we should all be positive and upbeat when discussing or sharing any of the childhood cancer issues, OR that we shouldn’t share those more difficult images + videos (they have their importance and impact too)…I’m merely saying that I understand the need of BALANCING the hard truth with HOPE, I’ve certainly done it with my own photos of Natalie. We need to first engage new people, bring them into our world…THEN once they’re there, little by little they WILL see and learn the truth for themselves. They’ll know more about childhood cancer then they ever cared to know…but the difference is, that they won’t change that channel immediately because they didn’t even realize that they’ve been watching and listening (does that make sense). Maybe I see things this way because I’m fortunate enough to be able to say that my child is surviving cancer…or maybe it’s because in comparison to the suffrage that I’ve seen some of these other kids (and their parents) go through, again and again and again…Natalie’s experience can’t be compared.   Ahh, there it is…my survivors guilt rears its ugly head again, but that’s another post for another day (coming soon to my blog near you).

Okay, so at this point you must be wondering where the hell I am going with all of this talk about balancing! Well here it is. Very recently there was a media outlet released covering a small glimpse into what it was like for all of us during Natalie’s fight against her cancer (high-risk acute lymphoblastic leukemia). When I originally decided to write you all today, I had every intention of sharing this particular story that I’m referring to…however after speaking to some close friends whose opinions I regard highly, I decided not to. Instead I want people to come across this piece organically and with an open, untainted mind…this way they can react, feel, and form an opinion all on their own. So far the reviews have been mostly positive…I’ve had people reach out to let me know how moved they were (all from the parents of healthy children), and I’ve had the opposite reaction from some of my own childhood cancer community parents. While the idea of letting my fellow cancer parents down really bothered me at first, my mother always taught me that you will NEVER please everyone, so don’t waste your time and energy trying to do the impossible…also, things in life may not always come out the way you expected them too, well so what…make the most out of any opportunity and keep moving forward. Anyway, once I pushed past that initial disappointment of feeling as though I had let some people down, what really started to bother me more was the simple fact that something meant to help the childhood cancer community, and something that had derived from genuine, caring people was being used to instill a negative light (and by the very people whose side that I am on).

Some of my fellow childhood cancer parents saw the piece and were angry calling it all fluff (exactly what our community tends to hate). The thing is, I saw where they were coming from…but as I thought more about it, and as MANY people reminded even me, this piece isn’t meant for the parents of childhood cancer patients…we don’t have to be made aware…we are already WELL AWARE. It’s for people who are NOT in the childhood cancer community directly…they are the ones that we are trying so desperately to reach. At any rate, some of these people shared their knee-jerk reactions by making comments such as “well she only has leukemia” as if to say leukemia is not so bad. This in turn angered some of the parents of leukemia children…remember, that while ALL leukemia is the one childhood cancer that researchers know the most about, and it does have an 80% survival rate (unlike other childhood cancers)…there are still 20% of children battling ALL who experience significant complications, and who WILL NOT survive their leukemia…not to mention that there are many different forms of leukemia, one being AML (acute myeloid leukemia) which researchers still no very LITTLE about, therefore that 80% survival rate excludes those children entirely. So please, before you dive in with your opinion, think about the power of your words and how they may deeply hurt another mother or father feeling your exact pain (or maybe even the ultimate pain of having lost their child)…and remember, WE ARE ALL ON THE SAME TEAM regardless of strategy! My child is a survivor (in November officially), and yet every time this is applauded I graciously say thank you before diving into my usual dialogue about just how many children and their families do NOT share our same fortune.

Anyway (don’t worry I’m wrapping this up), the real issue at hand here is the fact that I’m having to talk about balancing the education of childhood cancer at all! Why the hell do I (or any other parent in this community) have to continuously walk on eggshells when talking about childhood cancer? Why is it that I feel as though I am constantly having to sell this pertinent, life saving information? Why is it still more or less taboo to talk about and discuss childhood cancer? Of course I already know these answers actually, it’s because people are scared, they don’t want to think for a second that it might happen to their child. Well guess what, you should be scared…childhood cancer is the NUMBER ONE disease killer of our kids and guess what else? It spares NO age (clearly), region or ethnicity, and researchers still don’t know the main cause of most childhood cancers. I hate that I have to be a damn gymnast when I can’t even touch my toes…balance, balance, balance, it’s mentally exhausting in all honesty. However at the end of the day, if I have to upset a few people here and there in order to secure 1000 new voices for our kids, then I’ll do it because at the end of the day I know that WE are all fighting for the same thing…and even though I truly believe that we are stronger in numbers, if some of us need to divide and meet at the end to conquer childhood cancer, then I’ll happily see you there.

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