Why I Don’t Feel Guilty About Taking a Bubble Bath in My Son’s Hospital Room


My son was in the ICU, and I took a bubble bath in the bathroom of his hospital room. Yes, you read that right. Absurd? How could I? What was I thinking? Self-care is the only word I can use to explain the absolutely amazing time out I gave myself. 

He had been in the hospital for months — literally. My son was born with a rare illness. I guess you can call him a modern day “bubble boy” because experts at world-renowned hospitals have never seen anyone survive with his condition. Just knowing this didn’t deter my thoughts. I knew he was a strong baby. I also knew I needed to take care of myself, so I could be the best advocate I could be for him.

Honestly, though, I didn’t take bubble baths in the ICU bathroom in my son’s room often. I mean, really, how can anyone relax with all that beeping, blinking and ringing going off. But self-care was the one thing I could do to take my mind off of the absolute stress I was going through. 

Stress can be unimaginable. Emotions can be overwhelming. Simple little things that make you smile matter so much more when you have a different perspective on life.

Watching my son breathe felt so much more intense than it did when I first became a mom 10 years earlier with my daughter. When you’re going through something so traumatic like your son being unconscious in a pediatric ICU, it’s so important to give yourself a time out once in a while. 

I’d rely on nurses and volunteers to sit with my son, so I could get out of his room and take a break. I often found myself taking a walk through the hospital to the gift shop for a candy bar. I ate a lot of chocolate, drank a lot of coffee and subscribed to Hulu to watch TV shows I enjoyed at my convenience.

I’d polish my toenails on occasion, enjoy new hand lotions and do arts and crafts with my daughter (that’s a whole other story). I always played relaxing music in my son’s room. I made his room a relaxing environment to encourage healing. If I could have brought in candles to make it smell fancy, I would have! But you’re not allowed to light a match in a hospital or the entire floor would go into fire drill mode with doors closing and staff rushing to find out the cause.

We were there for a very long time. We’d move from floor to floor as his issues changed. We got to know so many nurses and doctors on so many floors that my walks through the hospital to the gift shop turned into what felt like a stroll through the neighborhood smiling and saying “hi” to various hospital staffers. 

Looking back, it was an unfathomable experience — one that I wouldn’t wish anyone to ever go through.  

Unfortunately, many families will have to go through a similar experience. Families with rare illnesses. Families like mine. But we’re lucky, blessed or whatever you want to call it because our son is thriving nearly six years later. You’d never know from looking at him that he has a primary immune deficiency of unknown etiology, has had bone marrow transplant twice, was granted a Make-A-Wish request or that he gets hospitalized for months when he catches a viral illness.

I’m grateful for him, and this may sound a little odd, but I do enjoy the small positive moments I experience because having a chronically ill child makes you look at life differently. I don’t feel guilty for treating myself to a bubble bath in the ICU. I feel lucky to be his mom and enjoy every day with him. I am his best advocate because I take time out for myself.

We want to hear your story. Become a Mighty contributor here.

Lead photo by Thinkstock Images


Find this story helpful? Share it with someone you care about.


Related to Rare Disease

man drinking hot coffee by window

When Someone With a Genetic Condition Hopes to Have a Family

“Let’s start a family, I’m ready.” Anyone who has ever dreamed of having children longs to hear those words. However, the same words can elicit a sense of uncertainty among those who have been diagnosed with a debilitating genetic condition. 80 percent of rare diseases are genetic in origin, and approximately 50 percent of those affected [...]
school bus for children with special needs

Why I'm Glad My Son Rides the 'Short Bus'

I left work early today so I could meet the bus. I wait on our front porch, watching other parents walk their kids home from the school around the corner. “Hi, EH-DREEEEE-ANNNN!” A horn honks as a girl waves to her friend. I hear some parental motivation: “C’mon!” “Let’s go!” “We’ll be late.” Watching my son’s bus [...]

Gina Szanuck - Rare & Undiagnosed Network

Gina Szajnuk is the mother of three children with rare and undiagnosed genetic dysfunctions.
woman holding a note that someone left on her car that says Handicapped? Low Life!

To the Person Who Left Me a Rude Note After I Parked in a Disability Spot

You left a rude note on my car that said, “Handicapped? Low life!” after I parked in a disability spot. Even though I had a disability placard in my car, it’s clear you still didn’t believe me. Instead of being upset by it, I would like to take this moment to educate you and to advocate for [...]