Explaining Crohn's To A Child

Across the last three years I've been hospitalized numerous times for a variety of ailments, including a Crohn's flare. We've always used very basic language around that type of experience, such as: "Mommy has to go to the hospital to see special doctors and get medicine that she can't get at home. You can FaceTime whenever you miss me, and I'll be home as soon as I can be."

Since our daughter was just an infant, she’s come to understand that I get IV medication every five weeks when our home health nurse comes over. She's never asked why or what it was for, but she certainly knows the infusion routine and how to keep me company. She also knows that I’m extra tired afterwards and sometimes need an extra day to rest.

But now, as my daughter is nearly halfway through kindergarten, a moment came up that felt just right for her to learn more.

Explaining Crohn's to a young child

I had a particularly symptomatic day. After three times of cutting her off mid-sentence, leaving our play area, and rushing to the bathroom, I decided it was time.

I explained to her that mommy lives with a disease called Crohn's disease. I explained that while there is no cure, and it won't ever go away, mommy does a lot of extra things to take care of her body so that it behaves the best it can. I explained that Crohn's disease means that my tummy doesn’t work the same as her tummy or other people's tummies. I told her that sometimes my stomach hurts and it makes me rush to the bathroom often, repeatedly. I added that I don’t always know why it’s happening in the moment and I can’t always prepare for it. Sometimes, I told her, we have to learn to be patient and flexible (ironic, since those are two traits I have always had some struggle with).

Talking About treatment: infusions and flares

Next, I shared with her that the infusions I get routinely help my disease to stay as quiet as possible, but sometimes it just acts out without warning, like today. I told her that on days like that, I have to rest and stay home to take care of myself. But those things alone won’t make my disease better or take away the pain it can cause me. They just help me get to the next day, which hopefully will leave me feeling a little bit better.

She asked me a few questions while we talked, ultimately seemed satisfied with the answers given, and went back to playing with Barbies.

The emotional toll of sharing your IBD journey

Meanwhile, all I can think about was whether I did it right. I wondered whether it’ll help her to understand or make her worry for me more than she already does. Have I mentioned I’m raising a tiny empath?

Knowing my daughter, this will come up again once she’s had time to process and new questions arise. I promised myself I’d always be truthful with her, even if it’s hard to find age-appropriate language.

In some ways, I feel a sense of relief that she knows now, so I can call it by name and explain more of what’s happening in real time. However, I continually feel tiny bits of loss every time I have to pop her five-year-old bubble and ask her to understand something hard, heavy, or grown-up. I just hope more than anything that she feels the tender care in which I’ve chosen my words, along with how and when they’ve come out.

The unconditional love of a Crohn's parent

It’s also deeply important to me for her to know that this doesn’t change anything between us, how much I can show up for her, and also how much I love her. If anything, I hope one day it’ll help her understand the lengths we went to in order to have her, our miracle baby, and why without choice, she is an only child.

Overall, I just want to be here to be able to watch her grow and learn and thrive. I want her to know that she's loved beyond measure, and that we did absolutely everything we could to bring her from a dream to a reality. I hope that as she grows, she'll learn in bite-sized bits just how much I've had to face and overcome, AND that it is in fact possible for her to face and overcome nearly anything life throws at her because she'll always have me by her side.