Oley 2023: A Mom’s Perspective by Emily Hoopes

I was at paint night with the ladies at my church comparing plans for the summer. “I’m taking my family to the lake,” one said. “I’m going to be stuck doing swimming lessons,” chimed in another. “My husband and I are splurging and going to Hawaii!!” And then they turned to me. I give the odd answers. My son was born with short bowel syndrome and had an intestinal transplant. So usually, I listen and nod. When I do answer, it doesn’t usually match what everyone else is saying.

We splurged this summer. I cashed in my frequent flyer miles. My husband took the week off work to stay home with our children. I’m going on my first solo trip in five years! “I’m going to a medical conference in St. Louis,” I say. “About tube feeding.”

Why? That’s the thing people want to know. Why would I take this “me trip” and go to a medical conference?

Learning

Part of it is education. When you live with a rare medical condition, you don’t count on your doctors to know the latest research or your home care company to offer you the hot new products. Especially not when you live somewhere with as many wide-open spaces as Utah. You have to be the expert. You have to go get that information yourself. When it comes to PN,* enteral feeding,** and nutrition support, the place to get that information is the Oley Foundation, and there is no place better than the Oley annual conference. I am as invested in my own continuing education as any nurse or doctor caring for my son. So I soak up opportunities to learn, and this conference is at the top of my list.

It’s exhilarating to get to listen and ask questions of expert clinicians in a presentation. It’s thrilling to walk through a vendor hall and hold a product in your hand that solves a problem you’ve battled for years. It’s exciting to have emerging research presented to us as patients in a forum where we are treated as equals. In most contexts, patients are talked about, explained to. At the Oley conference, patients have an equal voice. In fact, often we’re the ones teaching them.

I love the opportunities for learning at this conference. But it goes deeper than that. At this one conference and in this one place, I can be my whole self.

At paint night and everywhere else, I’m always reading the room, keeping my cards close to my chest. I know my situation is too much. If I talk too openly about our lives, I step into taboo territory. My paint night friends might feel bad for me, might worry, might cry, might be grossed out, might not understand. So I don’t. I hold back.

Even if I’m not concerned about taboos and feelings, I want to talk about nutrition support in a way few others do. I have studied this topic and care about it deeply. It is rare to find others who feel passion about blended feeds or the price of ethanol locks or vascular access choices or syringe brands or how long you should scrub a hub with alcohol. Except, of course, at the Oley conference

Nutrition support consumes most of my time and energy. I spend hours a day on this one thing. I fight for it. Learn about it. Study it. Except in medical settings, I mostly have to keep it to myself.

Belonging

At the Oley conference, we are virtually strangers. Still, the first time you sit down to eat with someone and find yourself discussing ports vs. Broviac lines, you suddenly feel like you’ve come home.

I say strangers, but that’s not entirely true. Many of us moms have turned to Facebook, trying to fill the gaps of knowledge and care in the healthcare system. We know each other by name and profile picture, even though we’ve never met. Finding each other in real life is half celebrity sighting, half reunion with a long-lost friend. We belong to each other. So things moved quickly from “let’s take a selfie together” to “of course you have to sing karaoke with us.”

It’s different from relationships with other mom friends. In all my years as a mother, on play dates and in the pickup line, I’ve just sat back and smiled and nodded while the other moms talk—about feeding and potty training and the first day of school. I’ve smiled, but held back. Known in my heart we weren’t quite the same. Those things are different for me. I’m the mom who calls ahead when there’s a birthday party to talk about the menu. I send an alternative treat for when they’re serving cake. I’m the mom who Saran Wraps my child before water games at field day. I’m the mom who doesn’t flinch at her own kid’s vomit or diarrhea but freaks OUT if your kid has a runny nose. Different. Explaining why there are tubes. Explaining why we can’t come. Explaining. Excusing. Apologizing.

So there is something remarkably comforting in being with moms where there are no explanations, excuses or apologies needed. Where you just are. Where all someone has to say is, “It’s time to go hook up TPN.*** I’ll be right back,” or “Hang on, we’re gonna do a bolus real quick,” and everyone just knows what you mean.

You can finally just be yourself. You can finally have a conversation on equal footing. You have conversations that matter. That’s magic.

I had lunch with a young woman who grew up on TPN and a mom of a toddler. I have a teenager at home. The three of us talked about what it’s like to be a teen on nutrition support. We talked about how parents can help. That’s magic.

I ran around with my son on a video call during every break for a whole day so he could “see all the people like him,” and people just smiled and said hi and showed him their tubes. That’s magic.

I sat up until 1 a.m. with other moms talking. We are stick to-the-schedule, go-to-bed-early, stay-focused-because-mistakes-kill moms, but we stayed up late talking. Talking about feeding, and school, and inclusion. We talked about being scared. We talked about not knowing how to explain things to our kids that we don’t really know how to cope with ourselves. We laughed a little irreverently about the things we cope with. We compared notes. We commiserated. Moms from all over the country with kids of all different ages, different diagnoses, different experiences. But all with this one big thing in common. Our lives all revolve around nutrition support for our kids.

For once, we didn’t have to filter what we said or explain who we were. And that’s magic.

When it was time to go home, I stayed till the last moment I could without missing my flight.

I was tired from staying up all night and sore from dancing like I was a young mom instead of an old one. I had a notebook full of things I’d learned and new ideas. My head was full. So was my heart.

My life revolves around nutrition support. However, it often feels like something I keep to myself and handle alone.

I won’t be able to explain it to my paint night friends. They can’t understand. A medical conference doesn’t sound like a self-care getaway. But my Oley friends know what I mean. At Oley, you don’t have to filter, explain, or apologize. You learn, you connect, you celebrate. Oley is my Comic Con. An oasis.

For one whole week, I was able to be my whole self.

Totally worth the sky miles.

*PN = parenteral (IV) nutrition

**enteral nutrition = tube feeding

***TPN = total parenteral nutrition