I describe my 11-year-old son as a “carefree cutie pie” because that’s how he looks to the outside world. Always with a big smile and a kind word. But the world hasn’t been nearly as nice to him in return.
He was born with a rare digestive disorder and birth defect, which has made his life more painful than most.
Another boy the same age with a similar diagnosis, named Seven Bridges, suffered even more.
Seven wore a colostomy bag, just like my son used to. I know very well that bags aren’t fun, especially when you’re an active little boy. They can leak. They can tear. They smell bad and can give you rashes. They balloon up whenever you pass gas, and sometimes even pop. But they’re a necessary inconvenience for those who need them to survive. Wouldn’t you rather have a healthy kid with a bag than the alternative?
It’s hard to talk openly about colostomy bags, or digestive problems in general. They’re mostly invisible to the average observer and aren’t exactly polite conversation.
Yet, even if we don’t talk about them, bathroom issues are part of life for so many people. The National Institutes of Health estimates that millions have been diagnosed with conditions like Crohn’s disease, ulcerative colitis, and other digestive issues. The Ostomy Canada Association says approximately 70,000 patients undergo some form of ostomy surgery each year in the United States and Canada, and The United Ostomy Association estimates a half million Americans are living with a stoma (and thus, a bag) right now.
Seven was only 10 years old in January when the bullying, because of his colostomy bag, became so devastating he took his own life. This child endured 26 surgeries in his decade on the planet. Yet, it was the kids at school whose words and actions caused a fifth-grader so much pain and suffering he couldn’t take it anymore.
Let that sink in.
My son gets to do something Seven never will: go to sixth grade. He turned 11. He will get to experience the joys and woes of middle school and becoming a teenager.
Our journey hasn’t been easy, either. In fact, the medical stuff has been especially tough lately. This summer, our insurance denied my son’s treatment. We sought a second opinion, and now our doctors don’t agree on the next steps, and we’re stuck in the middle. Another big surgery is a real possibility.
And that keeps me up at night.
But then I remember Seven and his 26 surgeries. And it makes me step back and think about my son’s mental health and quality of life, and how we can’t neglect that important piece of his care and well-being.
It’s easy to get mired in the medical gunk. To become hyper-focused on research, and meds, and surgeries, and possible risks and outcomes. And feel sorry for ourselves because of everything that’s gone wrong or is still unknown.
But we, in fact, are the lucky ones. We still have time.
So I talk with my son about how we can prepare for the school year and whatever challenges are bound to come with it. We brainstorm what strategies we can use when his medical issues flare-up or his difficult situation starts getting the best of him. I tell him he doesn’t have to smile or put on a brave face (though he always does).
This year, we also sat down and had a very frank discussion with his teachers about what it’s really like to live with an invisible, chronic bowel condition. He knows now he can use the bathroom with a wave of his hand, instead of asking for permission or waiting for designated breaks. He knows he won’t get in trouble if he needs to hang out in the nurse’s office for a bit or even call me to come and get him.
And we continue to surround my son with friends and adults who have his back.
Because I think of Seven. Every day when I send my son to school, I think of Seven.
He could be my kid. He could be your kid.
And it’s heartbreaking. We need to do better for children living with invisible diseases. Aren’t they suffering enough already?
As we head into another school year, let’s remember everyone has struggles we know nothing about. Let’s choose our words and actions carefully and teach our kids to do the same.
Let’s lift each other up.
And ask for help. Or be there to listen, really listen, with patience, empathy, and love.
Let’s think of Seven and choose kindness. Always.