Taking Life Lessons from Crohn's Disease - Nemours Blog


Taking Life Lessons from Crohn’s Disease

Taking Lessons from Crohn's Disease | Promise, powered by Nemours Children's Health System

Contributed by Darcy Galnor, whose daughter is a patient of Nemours Children’s Specialty Care, Jacksonville.

The morning our daughter was diagnosed with Crohn’s Disease started like any other. We woke up as just a regular young(ish) couple with two kids, jobs and life’s typical stressors. (I guess maybe not entirely typical, unless taking our 5-year-old daughter for a colonoscopy is considered an everyday event). We’d been chasing the cause of her diarrhea for months, maybe even years. Dairy? Nope. Gluten? Nope. Strawberries (her favorite food)? Nope.

As we sat in the waiting room, anxiously watching for the doctor to tell us the results, we attempted to distract ourselves with work. Both of us had tablets rested on our thighs, cell phones on the arms of our chaisr. My husband downing coffee. Me biting my nails.

Then, the doctor appeared.

“She has inflammation throughout most of her GI tract. We’ll wait for the biopsies, but it appears she has Inflammatory Bowel Disease.” Wait. A second. WHAT? I start puddling up. What does this even mean? Where is she? Is she ok? Where do we go from here? Can we get rid of this? This diarrhea – that’s the worst it’ll get, right? She won’t have to be on medication, will she? Like forever?

Here we are, five years later. Five years of several hospital stays, countless doctor visits and infusions, good days, bad days, really bad days and just generally having our lives turned upside down. But we’ve learned to live that way. And, we’re still here – and we’re ALL stronger for it.

Having a child diagnosed with Inflammatory Bowel Disease is, let’s face it, devastating. We know more about Crohn’s Disease than we ever wanted to. You never know when the disease will rear its ugly head. It seems the moment you let your guard down, it shows up. Every time. And though I’m not writing this to bum anyone out, parts of it are definitely a bummer.

In many ways, we came out of these events like any other person: a little irritated at those who complain about cold and flu season, annoyed at those who say things like, “just give her this supplement and she’ll be cured.”

In other ways, the experience has forced us to recalibrate our way of living and thinking. We’re certainly far from perfect, but we try not to sweat the small stuff (“try” being the operative word). Every four weeks, when we make the trek to the hospital for our daughter’s infusion, it gives us pause. We’re reminded of what really matters: health, love, laughter. Not vacuuming the house or a work deadline or what the buzz is on social media.

It’s taught us a lot. I now know how to give an injection! I know what and where the ilieum is! But, and perhaps most importantly, it’s taught us that we’re not special. Stuff happens to everyone.

We’re all just trying to make it. And we WILL make it. As Olympic swimmer Kathleen Baker said, “it won’t be easy, and it won’t be straightforward, but you can live the biggest life you can imagine.” And our daughter certainly has. She hasn’t let Crohn’s Disease define her. And none of us can, either.




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