Pack your bags, we’re going on a trip! We aren’t going to the beach or the mountains—we’re going to the hospital. You’re probably thinking, Oh, no big deal, it’s just a few days away from home. Wrong. It’s a two-week hospital stay, and you’re not allowed to leave your room.

I was diagnosed with cystic fibrosis at the age of four. That meant numerous doctor appointments, breathing treatments, a feeding tube regimen, and two-week hospital stays. In elementary school, I didn’t mind the hospital. My Aunt Jen would visit me almost every Saturday and bring me gifts, which made it feel like Christmas. I would make arts and crafts, decorate my room, and make the most of my stay.

Over the course of the many two-week stays I had growing up, I experienced a lot of good and bad memories. I had a gel nail kit from my nanny Polly, and I would paint the nurses’ nails—or anyone else who had time to sit in my room. I loved to talk (and still do), and I took full advantage of it when my respiratory therapists or nurses hung out with me. I used to hide and scare my healthcare providers; most of the time, this made my day. I was bored all the time and had to find ways to occupy myself. One time, I made friendship bracelets, mosaic art, paintings, clay figures, and even earrings to give away. I would decorate my door to display these items, and people would write their names down to enter a giveaway contest. In the hospital, people would say my name, and everybody knew who I was.

I grew up in the hospital. I was admitted every two to three months and would live there for two weeks in isolation. This meant I wasn’t allowed to leave my room. When I entered middle school, I got very sick and required more frequent hospital stays. I danced growing up, so hospital stays meant two weeks without dance. I started to understand that if I didn’t take care of myself, it meant longer hospital stays. Instead of two weeks, it could turn into three—and I was not a fan of that.

High school was very hard for me. All of my peers went about their lives, while I was stuck—frozen in a room by myself. I missed out on school activities, dance classes, and lost my motivation to succeed in school. I remember one time I was making arts and crafts and just lost it. I threw my supplies everywhere and had a full meltdown (I was very dramatic). In that moment, I was so tired of being stuck in a bed. I missed my friends and felt left out of so many things in life.

I will always remember the good and the bad—but I needed the bad to develop into who I am today. I took the negatives and did my best to make them positives. There are so many other stories I have from the hospital, but it would take me hours to share them. My family, nurses, respiratory therapists, child life specialists, and care partners helped me throughout my “vacation.” Thanks to them, I can be grateful for the positive experiences—and even the negative ones.

By: Daelyn James