Guess what?

September is Childhood Cancer Awareness Month. Correct? I mean, my loyal readers should know this by now, right? My Facebook followers have seen many pictures over the course of Ben’s nearly decade-long fight against neuroblastoma, yes? I mean, raising awareness is kinda what this month is about and that’s where I’ve been focusing my energy. Drudging up tragic memories, sharing harrowing experiences, celebrating triumphs, mourning losses.

If you don’t like it, please, let me apologize for offending you.

But guess what? I’m offended that you can’t take five minutes out of your day to care. Yes. I talk about it all the time. I won’t turn off my “nozzle” that spews nothing but childhood cancer all the time. I don’t stop after September morphs into Breast Cancer Awareness Month (otherwise known as October) and I’ll NEVER stop.

Part of raising a child is to support them. To love them. To encourage them. To teach them. And if I can take five minutes out of my crazy stressful day to read about your child excelling in sports or acing a spelling bee or something cute they’ve said or done, (all of which I thoroughly ENJOY hearing about) then you can show the common courtesy of affording me the same opportunity. My news isn’t always good. Sometimes, it’s downright dreadful. But Ben deserves every ounce of awareness that I can drum up. He has lived a life that NO ONE wants to live – that no one deserves to live.

If you don’t like it, you know what you can do? Ha! Bet you thought I was going to throw some four-letter words your way, didn’t you? No. You know what you can do? You can help CHANGE IT.

I’m not Sally Struthers begging you to feed the poor in Africa. I’m not a PETA advocate begging you to stop abusing animals. I’m not even a St. Jude commercial begging for contributions. While I think all these causes are extremely worthy – I AM a bleeding heart liberal, after all – I’m just asking you to follow Ben’s journey and find it in your heart to care. It’s personal to me because it’s personal to him.

Ben is an extraordinary young man. And if his cancer offends you – if my raising awareness offends you – then do what so many others do and look the other way. I don’t want your hateful words. I don’t need you talking behind my back saying “I wish she’d move on. Everybody KNOWS he has cancer.” If you don’t want to hear about it, help me CHANGE it. Or, crawl back in your hole.

Now, I need to let you know that all of what I said above isn’t just from me. I’ve been hearing over the course of this month that many people from the pediatric cancer world are getting flack from others for talking non-stop about childhood cancer. They’re tired of hearing statistics. They’re tired of seeing sad pictures of sick children. They’re tired of cancer, cancer, cancer. Well, guess what? SO ARE WE!!! Are you ignorant to think we enjoy this? Are you really that misguided that you think we have nothing better to do with our time? THESE ARE OUR CHILDREN! We’re SAD! We’re DEVASTATED! We’re BROKEN! And yet, we’re PROUD. This is our life and we must make the most out of what we’re given.

I read where one mom received a reprimand from an acquaintance stating that they had never had a conversation where he didn’t hear about her child’s cancer. He felt sorry for her that this was all she had to talk about. Geez. We are here, our hearts completely exposed, and their answer was to rub salt in our wounds. Excuse my language, but what a d*ck! Unfortunately, though, this is not an isolated event. Someone posted on Ben’s blog a few years ago “I hope your son dies.” Now, I know my job is to brush that off and chalk it up to someone being a complete a$$hole, but it ripped me to the core. I don’t think I’ll ever forget that nugget of hatefulness.

For my fellow cancer families: there are some people who will never change their minds. We can’t make them think differently. Not everyone is going to jump on our bandwagon. But what we’re doing is the right thing. September is ours to spread the word. And for those of us who live with it every day, guess what? It’s okay to talk about it any old time you want. It is, after all, a free country.

Dismiss the hurtful people as best as you can. Pray for them if that’s your thing. But then MOVE ON. You know what you’re dealing with. You know how hard it is. And no matter what happens, know that I am always on your side. ALWAYS.

I will NEVER give up. For all who have fought and won. For those who have fought but lost. For those still fighting. For my Ben.

 

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12 Comments

  1. Heed your own words – you are wise beyond your years as is Ben (unfortunately). Ignorance knows no limits & really doesn’t discriminate any more than cancer does.

    I wear my gold proudly (and sadly) and wish that it would get noticed – but not so much even with my beautiful Alex’s Lemonade butterfly pin attached. And Yes – Ben’s cancer does offend me – BUT as it relates to how it has impacted him, his treatments, the fact that he is in “that world”, and you as his mother right there with him, etc. etc.

    You “own” the right to bitch, rant/rave/vent, educate, whine, share, whatever/whenever you want & you don’t even need my bossy permission or my 2 cents:=)!

    The above is about as ladylike a response from a caring mother’s heart as I can muster. Pediatric and cancer should not be said in the same breath and progress in the way of more effective, less horrifying treatment, prevention/treatment etc. is LONG LONG overdue. Priorities can be pretty skewed by government & those in the position to make a difference and don’t!

    Think you just need to hang a pair of your shoes on your door and let the morons walk your walk for even a day and then they should dare to talk!!!!

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  2. I have no family of my own, but have been following young people with catastrophic diseases for five years or more to give moral support and prayers. I’ve been accused of being morbid. Sad. I’ve formed several long distance friendships with families of the children, some with great outcomes, others no so great. No one going through what you and your son are should ever need to apologize for what you say. You have more than enough to worry about. Ignore (as much as possible) the ignorance of the unwashed and put your mind on what is important, fighting the fight. God Bless, Jim

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  3. Love you and Ben and will sadly and proudly preach his/your “story” to anyone who will listen (and to some who don’t). I will do anything in my power to help you/him and those who fight this craziness on a daily basis. It, absolutely, is the LEAST I can do as the parent of a non-cancer-affected child, as a friend of yours, as someone who loves Ben, as someone who has a heart, as a human being who recognizes that these children and families don’t choose this and would do anything in the world to not have to deal with it. I’m appalled at the idea that someone would post something so hateful on Ben’s blog, and would hope that someday they don’t find him/herself in a similar situation. I will continue to do what little I can do to help, because if everyone does a little, it builds up to a lot. I want Ben to be healthy. I want you to have a healthy child and Mad to have a healthy brother, and Ben to have a healthy life.

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  4. In the meantime, I will do everything I can to get others to understand that we can all do SOMETHING, and we owe it to our own “healthy” children to model that there are more important things than ourselves in this life, and we should all do what we can to help others. So Sara, I see your “preachy” and raise you more preachy. Preach on, sister! I love you guys!! xoxoxo

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