As my baby grows up, I must learn to let go

A teenager's 14th birthday stirs conflicting emotions for this mom

Patrice Williams avatar

by Patrice Williams |

Share this article:

Share article via email
Main graphic for column titled

My son Jonah turned 14 at the end of last month. To celebrate, he invited 10 (!) kids over to our house to hang out. They played basketball, darts, and pingpong and rode our go-kart. Except when they wanted food or cake, Jonah didn’t need me. I didn’t need to entertain anyone or watch over them. I didn’t need to lead activities or facilitate a craft. Instead, I lay on the couch watching “Outer Banks.”

My baby didn’t need me.

A group of 11 teenage boys in various sports clothing cram together on a living room couch for a group photo.

Jonah, bottom right, hangs out with his friends while celebrating his 14th birthday. (Photo by Patrice Williams)

The following Saturday, my best friend had a friends and family day at her soon-to-open coffee shop. Jonah wanted to go for a couple hours and help take orders at the register. My friend said he could, of course, but I was worried he’d be more of a hindrance than a help. Maybe epidermolysis bullosa (EB) would prevent him from being able to navigate his environment. Maybe it would cause my friend more work.

But Jonah did indeed take orders, all while successfully operating the cash register and happily greeting and chatting up customers for two and a half hours. He only left because we had to do a bandage change. He ended up being a huge help to my friend.

My baby didn’t need me.

Recommended Reading
A trio of mice climb in and around beakers and vials in a laboratory.

Enzyme in Neutrophils May Be Therapeutic Target for EBA: Study

A teenage boy flashes some type of hand signal while standing behind a cash register at a coffee shop.

Jonah works at a friend’s coffee shop, operating the cash register and greeting customers, during a recent friends and family day. (Photo by Patrice Williams)

Last Wednesday, Jonah was picked up straight from school to go to a Charlotte Hornets basketball game with a friend. I dropped him off at school that morning at 8. He didn’t get home until close to midnight. And he was OK. He might have had a few extras boo-boos and a big blister on his foot from all the walking, but it wasn’t anything that couldn’t wait until the morning. In the stadium suite, he excitedly made his own dinner plate, filled with only dessert items.

My baby didn’t need me.

The day before that, he sat at the final Wake Forest home basketball game at the radio broadcasters’ table. He wore the headphones, squished his chair in between the two professionals, and even spoke on the radio. He talked about lobs and dunks and his partnership with Team Impact, an organization that matches children facing serious illness and disability with college sports teams. And he did it by himself. I didn’t need to be his voice.

My baby didn’t need me.

A court-side view of a college basketball game, taken from behind the radio broadcasters' table. A teenage boy sits between two older sportscasters, all wearing headphones.

Jonah sits at the radio broadcasters’ table at the season’s final Wake Forest home basketball game. (Photo by Patrice Williams)

New territory, new emotions

What is this growing up thing? What is this pattern of breaking away? How can I be so happy and scared at the same time? Why do I want to punch people when they call him “little guy” or talk to him in a baby voice, but simultaneously want to pick him up and hold him in a rocking chair?

I’ll tell someone, “He’s just short, dude. He’s not a little kid.”

But at the same time, I’ll say, “Come here, Baby J. Let’s snuggle.”

Next year, Jonah will leave the safety and security of the small, private school he’s been attending since kindergarten to go to big, bad high school. He’s so excited. I’m mostly just terrified. His nurse will still attend with him, but he’ll have to take so much more responsibility for himself and his safety than ever before. I’m getting heart palpitations just thinking about him walking through the crowded hallways laden with huge kids.

I’m even thinking about college, for goodness’ sake. Will he need to live at home and attend one of the local schools, or will he want to venture out into the great unknown on his own?

Will he want to venture out into the great unknown?!

Of course, he’ll always have the worries of tube-feeding, tending to blisters, changing bandages, and dealing with chronic pain. But the older he gets, the more he’s concerned with “normal” kid things. He’ll have the challenge of dealing with all of his EB-related stuff while also navigating the struggles of his teen years. And I’ll have the challenge of being there for him in all the ways he needs and letting go in all the ways he wants.

I’ve been his very life in so many ways for the last 14 years. He deserves for me to let him go. The truth is, for the longest time, I didn’t know if he’d make it to the age when I’d get the privilege of doing so. And yet, here we are. Most days, I’m OK with it.

Even when my baby doesn’t need me.

Note: Epidermolysis Bullosa News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Epidermolysis Bullosa News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to epidermolysis bullosa.


Brenda Keys avatar

Brenda Keys

Once again, you have expressed so eloquently the feelings and emotions of being an EB mother. You have such a gift! Jonah is one lucky teenager.


Leave a comment

Fill in the required fields to post. Your email address will not be published.