When a 5-Year-Old Had the Perfect Response to My Son’s Feeding Tube
When my best friend wanted to take my children and me horseback riding, I was hesitant. It’s not that I don’t want to be social. I’m not trying to hide my kids from the world. It’s just that sometimes taking my two super cool, but medically fragile children out in public can be challenging.
There are the obvious reasons for this. I need to lug around endless medications for my daughter and supplies for my tube-fed son. But that’s not really the problem. It’s the stares and the questions that come with taking them out into the world. I like to avoid them at all costs, and I constrict our world, making it smaller and smaller by the day.
Walking in public with my children is like being in a parade. They are adorable, so the attention is warranted. My 3-year-old daughter saunters around like she owns the place. She has a head full of dark Shirley Temple curls, a 1000-watt smile and bright blue eyes. She is quite possibly the cutest thing you’ve ever seen, except, of course, for her brother. He relies on his chocolate eyes, perfectly fanned by lashes any woman would kill for, and a chipped-tooth smile to draw you in. Yes, my kids are adorable. But that’s not why people notice us.
My 2-year-old son towers over his older sister by a good three inches. She stands at 30 inches tall and weighs just over 20 pounds. People often ask if they are twins. I should just learn to say yes instead of answering the endless questions I usually get.
“How old is she?” Three.
“Wow, she’s really small.” Yes, she is.
“Is she a midget or something?” Who even says midget anymore? No, but she has a form of dwarfism.
“Well, will she grown bigger?” Got me.
Once they’re done with her, these curious people inevitably move on to my son and his feeding tube and backpack.
“What’s wrong with him?”
“What’s the tube poking out from his shirt?”
“Are you going to school with that backpack on?”
After 10 rounds of questioning, I’ve learned that it’s easier just to stay home.
Yet, here we are at the Little Dude Ranch with my best friend and a half-dozen strangers. Sure enough, someone lets their curiosity get the best of him.
His name is Zane. He’s 5 years old, and he’s fascinated by my son’s backpack. He’s polite and says, “Excuse me,” before letting the questions fly: “Why does he have that backpack? What’s the tube in his shirt? Why does his belly stick out that way?”
Zane’s mom is quick to shush him, glancing pleadingly at me. “I’m so sorry. He can be a little overzealous” It’s completely OK, I tell her. I can answer this.
“Well, he has this backpack because it has all of his food in it. See that little tube under his shirt? That tube goes right into his stomach and feeds him all the time. It’s really cool because he gets to eat all day long without having to stop and sit down for lunch.”
“Oh,” Zane replied. “Mom, did you hear that? He doesn’t have to stop playing! I want a backpack like that, too!” And that was it. End of conversation. Satisfied with my answer, he ran off to check out the ponies, hollering for my son to follow him.
His mother smiled and thanked me for my patience and understanding. She darted after her son so quickly that I never got to thank her or her son. So, here it is:
Thank you, Zane’s mom. Believe it or not, your son is the most tactful observer of the backpack we’ve come across. You have raised a beautifully inquisitive yet respectful child. I wish more adults were like him. Thank you, Zane, you accepting little 5-year-old, for including my son when you went to look at the ponies.
Thank you both for helping me realize that the world — our world — could use a little more understanding and a lot more 5-year-olds.
The Mighty is asking the following: What’s one unexpected source of comfort when it comes to your (or a loved one’s) disability and/or disease? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our “Share Your Story” page for more about our submission guidelines.
Want to help end the stigma around disability? Like us on Facebook.
And sign up for what we hope will be your favorite thing to read at night.