Role Model

It’s September, which means that it’s National Childhood Cancer Awareness Month. I’m kicking off the month by snuggling next to my three-time cancer survivor while he continues to snooze. Ben is a very loving and affectionate boy – so I don’t have to steal my snuggles very often – but there’s something so precious about being able to hold him and nuzzle his soft peach-fuzzy head while he’s unaware. He breathes a deep sigh and my heart pounds louder. Don’t leave me, Ben. We can’t let cancer win. It’s tenacious. It’s vicious. It doesn’t care how my maternal heart feels. Or that Ben is just trying to navigate his young pre-teen life in your overbearing shadow. You suck, cancer. I wish you’d get a conscience.

It’s overwhelming to think that he’s been fighting off and on for nearly ten years. And before he was diagnosed, how long was he full of disease? It’s hard to say. All I know is looking back on pictures we had very different expressions. Before cancer we were blissfully unaware. And now we have a tired – yet determined – appearance. We’ll fight this beast for the next forever. If – God forbid – Ben loses his fight then I’ll fight for the others who continue their battle. It won’t end with our situation. It will never end for me.

So, as I type and my tears begin to overwhelm me, blurring my connection to the computer screen, I allow my fingers to unleash all I’m feeling. I miss all the babies we’ve lost along the way. The children who fought with smiles on their faces because they just didn’t know how bad it was. They faced their beast as if they were a Disney hero fighting a dragon because, well, that was their role model on how to fight. Raising their foam sword in the air and exerting a battle cry as they headed in to slay the imaginary beast. And that’s how we’ve had to fight all along, blind to what cancer was doing internally. Affecting organs. Killing cells. Sloughing stomach lining. And hopefully killing what was trying to kill them. Seeing cancer through a child’s eyes, with their beautiful sense of child-like wonder, helped me to see it a bit differently myself. I’m a cancer survivor, too. But I never faced my disease with the grace and bravery that many of these children have shown. They are my heroes.

And in having the privilege to still have Ben with me nearly 10 years later, well, I’ve learned so much. About cancer in general. About human nature. About people I didn’t know surprising me with amazing support and good friends surprising me with desertion. Our situation scares the shit out of people and it’s not uncommon to watch people run screaming as they try to exit our burning building. And at times I’d like to pull a “Carrie” and slam all the doors on people so they have to stay and watch the terror. (If you’re not a Stephen King fan, well, never mind this reference.) But we all deserve to get out alive. Especially these children. Especially my Ben.

Where do I find the good in all this cancer nonsense? Well, I see how Ben affects people who have an open heart. Just a couple of days ago, one of his teachers told me it was a privilege to know Ben. She took her role in teaching him very seriously and couldn’t wait to share the year with him. And she knew she could learn something amazing from him as well. I smiled and understood exactly what she was saying, as I, myself, have learned so much from this spectacular young man. And every day that he is given on this planet I learn a little more. He has so much to give. He has amazing amounts to offer.

So many of my friends have never met Ben and I’m sorry for that. I wish we all lived closer just so you could know my amazing boy better. I try to share as much as I can through my writing but it just doesn’t offer the same experience. Sure, I’m biased, but even my words as his mother do not do him justice. I am proud of my amazingly strong son. Just because you can count every rib he has through his painfully thin frame doesn’t mean that he isn’t strong. Looks can be deceiving. He’s bald. He’s tiny. He’s skinny. His scars often seem bigger than he is. But he’s stronger than he looks.

My son. My cancer warrior. My role model. My Ben.

My hero.

 

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7 Comments

  1. I long to meet Ben, in real life…I FEEL as if I already know him, via the pics, blogs, and videos. I honestly see such a dear, dear soul, just in his pictures! I’ve said it many times, and I’ll say it again….Ben is destined to do great things, for many, many years! ❤

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  2. Tears, awe, respect, understanding and appreciation for your mommy heart filled with pride, fear, anger, etc..but mostly LOVE:-)!

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  3. I do have the priviledge of knowing Ben since he was a baby. I used to babysit him but even better I played trains with this amazing kid. We went to King’s Island where the only ride he wanted on was the long-gone Scooby Doo ride which was inside. How patient he was in that long line of screaming and crying kids…but he wasn’t. He looked up at me and asked when was our turn…I told him we just had to wait a little while longer to get on that ride…and so we both just waited until our turn. Then we went to get a blue ice cream cone which melted all over us…but we laughed. I love you and miss you Ben and I long to see you again. Hopefully soon. Much love to you Sarah my sweet cousin.

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