July 29, 2012

As some of you already know, Steph’s journey has been a long and often…trying, to say the least. I can’t tell you how awful it has been at times; because she won’t let me….she doesn’t want to upset anyone. You don’t know what these kids face until you hear those awful words, ‘Your daughter has a mass on her brain stem and it is quite a large mass’. A big part of me is happy if you don’t know….that means your kids are healthy, and I couldn’t be happier for you. But then there’s the other part of me that is always thinking about the kids that have this huge battle to fight. I also think of their families; the fear and the difficult times they will face as they walk this road with their little ones. So, to keep my promise to Steph…I will not ‘carry on’ about the scary days she has faced. But I can tell you how pissed off I get when I see how hard she works on this campaign….and some days, it feels like she’s getting no where! Why is no one listening to her? Would it have killed Canada Post to put a Gold Ribbon on a stamp?! The kid collected and handed in over 25,000 signed petitions! Not one….not one of the selected stamps had anywhere near that kind of support! In fact this past spring Canada Post issued the new “Tecumseh” stamp with only 18 letters of support! We got emails from parents that were fuming when they read this in local papers!


After fighting for her life…..3 times over…she now fights to raise awareness for every child touched by Childhood cancers to hopefully make the world a little better those who will fight in the future. Still a kid herself….but has the weight of the world on her. She doesn’t feel sorry for herself, she has made a promise (to who?…..I wish I knew!) to raise awareness for this stink’in disease! Steph, Dean and Cooper have all been working on the new website for GRC, it is coming along pretty nice. But…it killed me to watch my girl squinting and at the screen (with her head tilted to one side to lessen the double vision)….watching her maneuver that mouse around with the ataxia playing havoc with her hand and arm, making this simple task way more than it should have been. Her double vision on top of her very poor vision can make her tire very easily when working on jobs like this. God! These are simple tasks, why does it have to be so damned hard for her?! Why?…..when she only wants to do good does it have to be like this? Several times I had to remind her to take a break and she must have been tired because she listened to me!


But here I am…asking myself, why is it the kids that have already fought for their lives the ones fighting for awareness? That should be our fight, haven’t they fought enough? But then again, who better…who knows more about the journey than the child that has walked it? Stephanie is hopeful, she believes one day people will know what the Gold Ribbon stands for, maybe even see one on someone’s product. When I see ribbons representing other cancers on every product out there….sometimes it pisses me off! Not Stephanie….she says we can’t be mad at a group for doing their job and getting it done.


So…it’s up to us, the moms & dads, grandparents, aunts, uncles, family and friends. It’s up to us to get this done! I don’t have to tell you how; you already know how….but we need to do it. Didn’t watching your kid suffer piss you off enough to take some action? We can sit around and whine about the lack of awareness or that there have only been 3 new drugs approved for treatment of childhood cancers in the last 25 years or we can do something to make a change. Don’t our kids deserve the same amount of attention as other cancers?


We as Canadians are content to sit and bitch about taxes, government, health care or whatever the “topic of the day” is then move on. We can’t let this be a “topic of the day”!  We need to stand up and demand better treatments with less life-long side effects…our kids deserve that much!



Proud Mom

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