I don’t know what I thought motherhood was going to be like so many years ago, but whatever I thought it was, I was wrong.
I recently ran across this quote from Joan Ryan, author of the book, The Water Giver:
“Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It’s about understanding that he is exactly the person he is supposed to be. And that, if you’re lucky, he might just be the teacher who turns you into the person you are supposed to be.”
Of course this reminded me of the quote from Batman, our kids aren’t the heroes we deserve but the heroes we need.
A few weeks ago, I was fortunate enough to hear the remarkable story of Ario Nour and his family. Ario had a brain tumor and had to go through a therapy that requires you to remain perfectly still with a mask on your face as you are put on a medical bed in a room, alone, while you have targeted radiation therapy. It’s called proton beam therapy, and it’s necessary for little kids, to zap the tumor but save the precious brain tissue surrounding it. As you can imagine, this can be terrifying and many children need anesthesia to undergo this treatment. The problem is, this isn’t a one time treatment, it’s five days a week for many weeks. That’s a lot of anesthesia.
Ario, at the age of seven, was very clear when he began his treatment: he didn’t want anesthesia every day, he would find a way to stay still all by himself. And he did. The nurses and social workers were so impressed with him that they had an idea: Maybe Ario could teach other kids to lay still too. He tried mentoring another child. It worked.
And this peer mentoring program was born. Kids with brain tumors teaching kids with brain tumors what to expect, what to do, how to lay still. To practice at home, before the treatment, kids try lying on the couch for increased amounts of time, often with something over their faces, like a washcloth or a spaghetti strainer. They are allowed to listen to music, books on tape, or something else that will keep them occupied.
Then they get their mask specially made to form fit their face. They get to decorate it, and they use it every time they get treatment.
Other kids, after going through treatment and surviving, went on to mentor other kids. They are proud to be the experts at something, and to show newbies who are sick and scared that they’ve done it and succeeded. That it was possible.
And the program grew. It wasn’t just one kid helping one kid. It was a program. Ario had started a peer mentoring program.
I got to hear him talk at the Family Centered Rounds at Massachusetts General Hospital for Children. Ario has had to go back three times for more treatments. (Read: He’s had more than one brain tumor.) Now he’s in high school, and he’s a normal kid. Smart, shy, humble.
His parents spoke too. Not only do they support Ario’s efforts for the peer-to-peer program, but they also support and ride with him for TEAM ARIO, where they ride their bikes 50 miles in the Granite State Quest and raise money to fight pediatric cancer. Ario and his family have raised over $300,000 and Ario has been honored as one of “The One Hundred.” It’s a dinner that honors one hundred people at Massachusetts General Hospital who have worked hard to fight cancer.
As I listened to this story, truly an inspirational story, it’s important to remember, Ario isn’t cured. He has recurring cancer. And his parents have this burden to carry, something no parent ever wants to deal with. And yet, here they are, parents of a child who started a peer-to-peer program, who’s raised hundreds of thousands of dollars, and yet, who is still chronically ill.
He’s not the hero they deserve, but he may be the hero they need.
Of course, Ario is a dramatic example, but think about your kids and what they have taught you. Have they taught you patience? Selflessness? Sharing? Have they taught you how to communicate better or how to fight more fairly? Mine have.
I’m including the video of Ario here, for you to watch. Grab your tissues.
And take a moment to think about how your kids have changed you for the better.