Seeing gold

I follow Glennon Melton on Twitter. A dear friend of mine introduced me to her blog, Momastery. For the most part, I like her stuff. She is funny, honest, and like the rest of us working to be the best mom she can and doing it in a positive way. I like that. I am also trying to do those things and spend less time in the negative judgey place that leads nowhere good. Today is not one of those days.

A guest blogger on the Momastery site wrote about her son’s autism diagnosis and how it has impacted their family. http://momastery.com/blog/2013/06/20/not-your-typical-mom/

There are many parts of this post that resonate with me. The devastation of a diagnosis that seemed to come from nowhere; the challenge of learning a new language of medical terms and treatments; long-term prognosis; impact on her marriage; caring for a younger sibling. The list goes on and on. I get it. I have been there.

And then, I read this: “I had irrational thoughts. I remember thinking- I wish Greyson had cancer, then there would at least be the possibility that it could go away.” Emphasis hers. And now I am seeing red. I am absolutely seething right now. The Momma bear is out in full force.

My post is not about this woman in particular. I don’t know her or her family. And this post is not about Momastery. I admire Glennon and her work.

My anger stems from the complete lack of awareness and understanding about cancer in children and how far we still have to go. Clearly this blogger knows nothing about childhood cancer. How prevalent it is- It could have been either of her sons or one of their buddies. How dangerous it is- 80% of our kids are STAGE 3 or 4 at diagnosis, thus greatly reducing their long-term chances of survival. How long and draining treatments are- YEARS. How OLD the medicine is and how lacking the technology really is for kids- developed over 30 years ago, for use in adult patients. How much money really goes to the kids- 4% of the NCI’s total budget. Mere pennies when compared to adult cancers. RAWR.

And, that’s the rub. This woman is doing all that she can to get her son all that he needs. She is coping. She has irrational thoughts. I get it. Been there. I remember at the very beginning wishing that our son had been diagnosed with leukemia because I thought (at the time), that that was the “good cancer” to get. Talk about irrational thoughts.

What is dangerous about this woman’s post is the complete ignorance it displays and the number of people it will reach who will blindly gloss over her words about childhood cancer and focus on the part about “the possibility that it could go away.” Some people will read her words and not even see that part. For most people, cancer is treatable. It is something that adults get as a result of their unhealthy lifestyle choices, smoking, or genetic risks. And as a result of the pervasive pink-washing (and soon to be public service announcements about men & their prostates) most people also believe that we are making progress against cancer.

Unfortunately families who have been devastated by a childhood cancer diagnosis know different. We rarely have “the possibility that it could go away.” Instead, we live with the reality that it could come back. It could come back worse than before. If it does, the chances of survival are even less than they were the first time. Instead, we live with the possibility of a secondary, new cancer which could have been caused by the very treatments that were used to save our babies the first time. And for some families, their child’s cancer never went away. It stole their children and they died.

I am frustrated because there are people out there, there are mothers out there, who still believe that their children are untouchable. And even worse, there are still mothers out there who believe that even if it did happen to their child, that it could just go away. Like they can take a pill, or cut off boobs (kids don’t even have boobs), or remove moles that look suspicious and then your kid will be cancer-free.

Mostly, I am frustrated with the childhood cancer community. Yes, good things are happening and there is awareness out there that didn’t exist before. I am thrilled for that. I was part of making it happen. But, I am realizing just how far we really have to go. And, that within the childhood cancer community, we need a stronger, more pervasive message that isn’t about anger or fear (ironic given the anger of this post!). We need to find a way to speak with words that will be heard. I am still searching for them. I won’t stop. I hope, I pray, I wish, I dream that others will be touched by our experiences and join us.

Going to re-focus the rest of today and see GOLD (not red ;))

Gold Ribbon

Kids get cancer, too!

14 thoughts on “Seeing gold

  1. Oh, I almost hate to do this to you, but you have to see this ad campaign that ran in the U.K. http://www.standard.co.uk/news/london/i-wish-my-son-had-cancer-shocking-ad-campaign-by-father-whose-sixyearold-has-incurable-condition-8607016.html … The problem is people hear about an 80% survival rate for childhood cancer and think there’s nothing more that needs to be done… My son Elliot had one of the “good” cancers, by the way, Wilms Tumor. Only, like you mention, it was so advanced at diagnosis, with so many lung mets they couldn’t count them, that they gave us a 50% prognosis to start with. I also wished for leukemia! Crazy thoughts. I understand the mom you mention is expressing her feelings about a permanent condition like autism, and those feelings are heartfelt and sincere, but I just don’t think ANYONE should wish for cancer “instead”…
    Thanks for this post, it was a good read and really made me think for a while.
    Nicole Scobie

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  2. Your passion and heart are simply BEAUTIFUL! Thank you for being brave and sharing your truth. My name is Chrissy. I am the mom that wrote the post on Autism. My heart aches for mamas and anyone dealing with Cancer. I just wrote what my honest feelings were in the moments I couldn’t get out of bed I was so depressed. I no longer feel that.
    I realize I am lucky! I would never want to make light of others struggles.Thank you for letting me be brave and share my truth too. Love,
    Chrissy

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    • Thank YOU for reaching out, Chrissy, and for your beautiful words about your son. I completely understand those moments of depression and not being able to get out of bed because you are so overwhelmed and paralyzed by the unknown. Some days, I still have them. It stops you in your tracks, doesn’t it? I recognize that your journey is different from mine, but on many levels, they are very much the same, too. We’re moms who love our boys ferociously and will do (have done & will keep doing) all we can to help them. I admire your drive & your passion. Thanks for sharing your truth. That takes guts.
      Best to you and yours,
      Monica

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  3. Cannot tell you how frequently I run across fellow Momcologists who have both Autism AND childhood cancer in their kiddos. I’m one of those Momcologists, too. Our eldest was DX’d with Asperger’s when he was in the third grade. Before Gregory was DX’d with cancer.

    I would be curious to see a study correlating Autism with childhood cancer. Genetic ‘oops’. That is how I rationalize it to my broken heart and fractured brain.

    I hear your anger, Momma. I feel your frustration. I love you.

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    • Love YOU Momma! Thanks for sharing. I am angry at the situation, not her. I admire her and her courage to share her story. I am angry that in 2013 people still think that it’s okay if kids get cancer because there is an 80% cure rate, or whatever. This anger is directed within our own community. We have not effectively managed the message. Ignorance is bliss. We cannot afford to have people outside our community remain unaware. We need them as allies. And, truth be told, we need the gifts of their time and their money.

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  4. That’s awful. I have a child with Autism and had one with cancer too. They are not comparable, but I’d choose Autism any day. No, it doesn’t go away, but it can be improved with therapy and as they develop. Cancer doesn’t. We tried treatment and now he’s gone. Forever. I will never get him back. So what’s better? Seems like a no brainer to me. 😦

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    • Thank you for sharing Stephanie. I am sorry for your loss. Cancer sucks.

      I am not angry with the blogger, just frustrated with the situation. In the depths of our son’s treatment I thought some pretty horrible things, too. I get it. Your mind goes to some really dark places. I am just annoyed that cancer is still so misunderstood and underfunded.

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  5. I just stumbled across your blog from others reposting it on Facebook. My 4 year old daughter is fighting her second battle with brain cancer and I also know those moments where your mind goes to the depths of every dark thought you can dream up. It’s inevitable at some point after a life changing diagnosis. Thank you for being so honest and truthful as well as letting the blogger share her hurt as well. I definitely get where you are coming from with how people view childhood cancer. I am one of those moms trying to change the views of the realities of what our kids go through. It’s not something that just goes away. Even if it does, the lasting effects can continue to show up years down the road. Thanks again for a great post!

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  6. As a mother of two who – by the grace of God – are not autistic and have not yet ( and hopefully never will be diagnosed ) with anything as horrific as cancer … I can say that I completely understand Chrissy’s words —where she readily admits that her thoughts / emotions were irrational —- wishing for cancer instead of autism.
    Emotions that were born out of pure FEAR… Fear that her son would never be accepted by his peers , speak the words ” I love you mamma,” have regular childhood friendships , play baseball, participate in the science fair, go to the prom, go to college, get married . When she had that irrational thought it was at the onset of her journey into acceptance of her son’s super powers – a condition that must have taken some time to accept and understand .
    So while none of us with cancer – free children are in a position to judge or understand the horrible pain of such a diagnosis , neither are those of us who have not endured the pain and fear of an autism diagnosis in a position to judge those who have. Chrissy has suffered thst pain for not one, but BOTH, of her children. No one is in a position to criticize the raw emotion / fear / irrationality of anyone who has… Even if your own child has had ” worse ” condition or diagnosis.
    While autism is not fatal , there is a death of a dream with that diagnosis, that every mommy has for their baby at birth …. The dream of ” normal ” interaction , and all the milestones and expressions of love and gratitude and joy that not every autistic child can ever learn to express.
    Kudos to Chrissy for having the courage to be honest about how she evolved from that self-admitted irrational state of fear to where she is now – changing and educating the world with her honesty, humility , and passion .
    Your frustrations about the lack of real information on childhood cancer are extremely valid … But they are not properly aimed at this lady. Her heart is only full of love.

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    • Hi Lisa. Thanks for taking the time to write. Emotions born out of fear are indeed raw and powerful, almost scary. I have been there. I can relate to Chrissy on multiple levels. I explain how in my original post. And I admire her courage in speaking her truth. That is all any of us can do, speak from our own experiences. I also clearly explain that in my post.

      “Your frustrations about the lack of real information on childhood cancer are extremely valid … But they are not properly aimed at this lady. Her heart is only full of love.” Thank you. My frustrations are indeed extremely valid. And they are not aimed at Chrissy.

      My frustration is not with her post at all or with her. She is doing what she can and advocating for herself and her boys in the best way possible. I admire that deeply. I am doing the same thing for my boys. My frustration is with the childhood cancer community, of which I am a part, and the lack of clarity regarding our message. My frustration is that people are still in denial about cancer in children, about how far we still have to go. That was the point of my original post.

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  7. I totally see where Chrissy came from with that. It truly seems like with cancer there is a demon to fight, something to conquer. That can give us a purpose and something to focus on, whereas with autism, the struggle is your child’s mind, for lack of a better explanation on my part. Hope has to come from another place with that. As mothers, and as women in general, we guard and protect the precious and vulnerable. Unfortunately, I think you’re right. People don’t want to believe children die from cancer everyday, so they stay with blinders on…until something like this post catches their eye. Much love to both you and Chrissy. Your strength amazes me.

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    • Hi Vicki. Thank you for taking the time to reply and for your honesty. And, I agree. I can totally see where Chrissy came from. I was there too. I remember wishing that my son had been diagnosed with a different cancer because (I thought) the chances of his survival were better. That’s crazy. But, when you are in the throes of fear, especially at the very beginning, your mind and your heart will go to dark places and do anything they can to claw their way out. I like your analogy about having a demon to fight. And you are right, it does give me purpose and it is something tangible. I remember that feeling during treatment. There was a clear enemy. I do not have an autistic child, so I do not know the agony of that diagnosis nor the struggles involved. I admire and appreciate Chrissy’s voice. She is courageous and strong. As a member of the childhood cancer community, I am struggling with our mixed messages, our lack of clarity about the severity of our kid’s situations, and the lack of funding due to the low priority given to kids. That is the point of my post. Thank you for your kind words. I appreciate them.

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