When People Respond to My Son’s Age With ‘But He’s So Tiny!'

“But, he’s so tiny!”

10007408_779395292070623_2012857074_n I’ve heard it many times before, and as I was just pulling my son off the bus, I heard it again. There was a new driver on the bus today, and as I was unhooking my son’s car seat, the lady asked how old my son was. She said she’d been singing “Twinkle Twinkle Little Star” with him and was surprised he knew the words to it. (It’s his favorite lullaby.) When I told her how old he was, her response was, “but, he’s so tiny!”

While this statement may seem harmless to you, it’s a glaring reminder to me of the invisible illness in my son. We’ve run so many tests and panels on my sweet boy, I honestly can’t remember them all without looking at the notebook full of them. Our best guess is a combination of his carnitine deficiency and gastroparesis is stunting his growth.

So, here’s what I wish I would have told you, and all the others, before and after you: 

What you don’t realize is my son will be 5 years old in April. When he was born, he was 21.5 inches long and weighed 8 pounds and 7 ounces, so he was not a little baby. By 6 months old, he weighed 26 pounds. At 18 months old, he weighed 34 pounds, and now, at almost 5, he weighs 37 pounds.

In two and a half years, my son has only gained 3 pounds and 7 inches. He can still wear a 24-months or 2T in pants and shirts; they’re just not long enough, so he wears a 4t. We have to belt or safety pin his pants up because they are way too big, but it’s the only way to get the length he needs.

When he was born, he was in the 95th percentile. From 3 months until 18 months old, he was literally so big that he wasn’t even on the growth charts anymore. Now, he’s in the 25th percentile in weight and 40th percentile for height.

What you don’t know is due to his carnitine deficiency, he has to eat every two hours, and he eats fairly well. (Some days are better than others.) He also drinks protein shakes and Ensure Plus, and he still won’t gain weight.

What you don’t know is that at one point he went months without really eating and swallowing was painful. (He had to have his tonsils and adenoids taken out. They were so big that they were digging into his throat tissue.) You didn’t see the effects that had on him, physically or developmentally.


You don’t know that for months now, his pediatrician has tried everything to help me buff him up, including medicines that were supposed to increase his appetite. He just doesn’t get any bigger.

You never heard the phone calls or our conversations where I’d pour my heart out to our doctor and cry hysterically because I don’t know how to help him. You also didn’t get to see the compassion in her eyes as she cried along with me because she didn’t have the answers.

You don’t know that if he hasn’t gained 3 pounds or isn’t up to at least 40 pounds by his 5th birthday, that same pediatrician will be forced to diagnose him as “failure to thrive.”

You don’t know that every time he hits a growth spurt, he’s nauseous the whole time and often vomits.

All you see is a little boy who is 4, almost 5 years old, and is about the same size as his 2-year-old brother. You see how little he is, and you sometimes offer advice. (Advice that 99 percent of the time I’ve already tried.) You’re really just trying to help, or you just thinks he’s a cute boy who’s just “tiny.” You don’t know how inadequate and helpless I feel some days and that those comments just drive the dagger further.

Instead of telling you these things, I smile, say thank you, and walk away. There’s so much you don’t know and so much I can’t tell you. I don’t express myself in speech. I articulate much better through written words. So, I can only hope you read this one day.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? 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.

Find this story helpful? Share it with someone you care about.

Related to Gastroparesis

To the Sibling Who Makes My Life With Chronic Illness Brighter

Dear Little Brother, You know I love you deeply because I’ve told you countless times. You know you are the cheese to my macaroni and the peanut butter to my jelly, but you’re also like the tubing to my IV bag and the tape to my bandage. If I didn’t have tubing connecting me to [...]

What They Don't Tell You About Being a Teen With a Chronic Illness

Life as a teenager can be overwhelming. Between the stress of trying to juggle schoolwork with extracurricular activities and the typical teenager drama, one can become exhausted. When you’re a teen with chronic illness like me, you have to manage all the basic high school struggles but also deal with the daunting task of keeping [...]

No, My Illness Is Not More 'Real' Than a Mental Illness

When I got my first nasal feeding tube, everyone started asking questions. I didn’t mind — I would ask questions too if my friend pulled a giant piece of spaghetti out of her nose. People asked things like, “What happened?” “What is that?” or “Are you OK?” and I explained I have gastroparesis. Occasionally, people [...]

Why I Want You to Invite Me to Dinner Even Though I Can't Eat

When you type the phrase “going out to eat” into Google, a number of suggestions pop up. There’s “going out to eat alone,” “going out to eat as a vegan” and “going out to eat paleo.” But what if you’re going out to eat…and can’t eat? Due to various diseases and conditions, there are people [...]