Taking our children out in public can lead to lots of interesting moments. There’s the time recently when we took our children to a restaurant and to our amazement, three separate people praised their good behavior. But then there’s the time I was trying to pay at the grocery store while eight months pregnant with a two and a four-year-old in tow and my two-year-old was screaming at the top of her lungs because she wanted to get out of the grocery cart. Talk about embarrassing.

Then there are the times when cystic fibrosis – which is the medical condition my oldest daughter, now age six lives with – turns a normal family outing into an emotional event. Whether it’s anger, frustration, sadness, or fear of what others are thinking, life with CF can lead to some small moments that become life-changing.

1. Eating Issues

Living with CF means that you have to eat a lot more than the average person. My daughter has to follow a high calorie, high fat, high salt diet. Sounds like a dream, right? Not when you don’t feel like eating. Her digestive system doesn’t work like it should and getting her to eat anything can sometimes be a battle. So, when you find a solution, you go for it.

When she was about one and half years old, that solution was whipped cream. If it had whipped cream on it, she would eat it. So one night we were at a church function sitting at a table with a bunch of people who didn’t really know us. My daughter would not eat. So my husband ran down to the grocery store, grabbed some of the highest fat whipped cream he could find, and plopped it right on top of her chicken. And she ate it. Yay us! Until we noticed the people staring. And the people mumbling about us. Back then we weren’t eager to offer up information on our child’s health. So we tucked our emotions away and tried to ignore their judgement. But I won’t lie – it hurt. Being judged by people who don’t know your situation is painful. And while it will help you grow a thicker skin, it worries you for your child’s future. That night, I learned something about criticizing other parents when we don't know the entire story.

2. Here’s the Solution

This one has happened more than once. Someone finds out your child has a condition like CF and here’s what they say, “Bring her to my church. They will cure her.” Or, “This all-natural home remedy will fix it.” Or, “They’ve cured CF. They just don’t want you to know, but I have the answers.” These are words that I can now laugh at when spoken (or messaged) but in those early days they just made me so angry. First of all, they imply that I’m not doing everything I can for my child. And second of all, WHAT? So, I put on my thick skin – although it’s relatively new and kind of heavy - and walk away. Sometimes we want to help other people, but we don't really know what we're talking about. This has taught me that not all the advice I have given has been good and to try to think before I speak. 

3. Pass the Sanitizer

We use sanitizer a lot. We even have a dispenser installed on our kitchen wall so guests have easy access to cleaning their hands when they come into our home. Germs are bad for my daughter. Just a cold means her treatment time per day jumps from two hours to four hours. It means she has to stop playing four times a day to sit hooked up to a nebulizer and machine. And if that doesn’t work to make her better, she would have to go to the hospital for two weeks. Because of a cold.

So many people like to tell me that we shouldn’t use sanitizer – that it kills the good bacteria too. Yeah, I know that. But I also know that if soap and water aren’t handy, I have to use sanitizer. We have to use sanitizer. Which leads me to those awkward moments at Mass when we exchange the sign of peace with everyone – aka shake hands. Afterwards, we break out the sanitizer. This has made people look twice because they wonder if we think they’re dirty. We only half think you’re dirty, folks.

It isn’t your fault though. It’s just that since you left your house you’ve touch door knobs and pews and countless other things that a kid might have sneezed on. As much as I want to explain this to everyone, how much time do I really want to spend on this or teach my daughter to spend on this? As she gets older, her health becomes her news to share or keep to herself. Not mine. Sometimes you just have to let people wonder. 

4. Not Contagious

At doctor appointments, my daughter wears a mask, even if she is completely healthy. This is because the doctor’s office and the hospital are both filled with germs that could hurt her. But the thing is that people see a kid with a mask and they want to get as far away from us as possible. Just imagine getting into the elevator with other people and you have a medical mask on. So in order to help take those wide eyes off of my daughter, I now wear a mask too. It’s hard enough having CF, she doesn’t need everyone looking at her like she’s going to infect them. Now they can stare at me too. One day she’ll be the one in charge of her health and knowing how to take care of herself emotionally is just as important as knowing her medications.

5. Don’t Touch Her

So this happened quite a bit when my daughter was first diagnosed. She was a newborn. People wanted to get close to her. To squeeze her. To cuddle her. But I wanted them to keep their germs as far away as possible. Sentences like, “Don’t get any closer!” and “Don’t kiss her!” and “Don’t touch her hands!” may have been shouted from time to time. I was always mortified after. I felt so bad that I had most likely hurt the feelings of these people who only wanted to adore my child. I still feel badly about it. Not only because I hurt someone’s feelings, but because CF was taking over my life and making me do things I wouldn’t normally do. And it was in moments like these that this became the most obvious. I had to learn to chill while still protecting my child. Gut reactions lead to regret.

Having a child with CF and going out into the world sometimes brings about stress for me. But beyond stress over germs, it brings emotions to the surface that I like to think are buried. Yet for each judgmental stare and each awkward moment, I learned something about myself. I learned about the type of person I want to be – one who never passes judgment and one who is always aware that everyone we meet is fighting a battle we know nothing about. I may not get it right all the time, but parenting a child with CF has many lessons to teach, and I’m still learning.