Having a child with cystic fibrosis—a disease that causes persistent lung infections and, over time, limits the ability to breathe—means spending a lot of time in the hospital. In total, Joanna Waller’s daughter Layla has been in the hospital 120 days since she was born nine years ago. Waller, of course, has been by her side the whole time.
Some hospital stays are expected and can be planned out. Others—like the one Layla had in November—call for a swift rearrangement of daily life for a couple of weeks (the average length of each hospital stay).
By now, Waller is a pro. With a few quick phone calls and emails, her son Rhett, 11, is taken care of. Since Joanna works from her Keller home, she just moves her office from the house to the hospital.
That does make for some unique situations, such as taking conference calls in the bathroom of Layla’s hospital room. But Joanna just takes it all in stride, and as Layla has gotten older, she’s learned to do the same. It’s a tribute to the way the whole family has learned to approach life since Layla was born.
You found out about Layla’s diagnosis about halfway through your pregnancy. How did that happen? Our doctor was able to diagnose her through the genetic testing we did. He was one of a few doctors I knew of that did such extensive testing in utero.
What was your reaction? Luckily, we had the second half of my pregnancy to mentally prepare. We could have sat around and had our own pity party, but instead we used our faith to pray joy over her. And that became our mantra, to “pray joy over her.”
We knew it was going to be hard and there would be tough times, but felt like it was just part of our story.
How much did you know about cystic fibrosis when you received Layla’s diagnosis? When I was in my early 20s, I worked for The North Face. One of our interns had cystic fibrosis, which was my first and only exposure to the diagnosis. I didn’t think much about it at the time, but when we found out about Layla’s diagnosis, I took it as further proof that God is taking care of us every step of the way.
You also have a son, Rhett. Did you have similar experiences with your children’s deliveries? From the beginning, it couldn’t have been more different. When Rhett was born, I pushed for two hours. With Layla, I happened to let out a little laugh while the nurse was having me do a test push, and that was that.
I literally laughed Layla out of my body. I remember my mom saying, “Well, you have been praying joy over Layla since receiving her diagnosis, so there you go.”
How did you adapt to being a “CF mom” after Layla was born? Oh, I was definitely a deer in the headlights. Mentally I was trying to keep my cool, but I had no idea what to expect. No one had prepared me for the long hospital stays that came with a CF diagnosis.
In many ways, the whole family’s life had to change. How did that affect Rhett? Honestly, it really didn’t. They’re only 18 months apart, so it’s really the only life he’s known. He’s such a great big brother, always wanting to do whatever it takes to keep Layla healthy.
Both Layla and Rhett are doing virtual school right now, correct? Yes, it’s just too much of a health risk for Layla right now with COVID-19 still going on. We assess every nine weeks as to whether we’ll stay virtual or try in-person.
How else has the COVID pandemic affected your daily lives? The only big change is that I’m no longer traveling for work. My fellow CF moms and I got a laugh at the beginning when everyone was searching for hand sanitizer and Clorox. The constant sanitizing was already our daily life. I had plenty of cleaning materials stockpiled, so I was able to share with friends and family.
What, if any, restrictions does Layla have when it comes to just being a kid? Besides the extra caution about germs and getting sick, she’s pretty much your average 9-year-old.
And luckily, being active is very important to keeping her lungs healthy. She loves riding her bike, jumping on the trampoline and has just started playing tennis since it’s a socially distanced sport.
How much does Layla know about her diagnosis? It’s pretty much been an ongoing conversation since the beginning. There was never an official “talk” about it. If she has questions, we talk about it.
How have you handled the long-term outlook for cystic fibrosis patients? Does Layla know anything about that? That’s probably the one conversation she and I haven’t had. Luckily, so much research is constantly being done and new drugs are being approved left and right.
How do you balance everything when Layla has to be admitted to the hospital? Luckily, work is so understanding. I already work from home, so it’s pretty simple to rearrange things if I have to or (laughs) take conference calls in the hospital bathroom like I’m doing right now.
As her mom, I want to be at the hospital with her 24/7, so Nathan—Layla and Rhett’s dad—can be home with Rhett. While Nathan and I are no longer together, he’s a huge part of our family, and we’re a team with Layla’s care in and out of the hospital.
Daily life for children with CF has a few added “activities.” Can you explain? Of course. On average, we do two breathing treatments a day. Because Layla’s stomach isn’t able to break down food, she has to take pancreatic enzymes before each meal or snack—30 pills per day! I give Layla chest percussion therapy twice a day, where I repetitively pat her on the back to help break up the mucus that can accumulate in her lungs.
Have you connected with other parents of children with CF? I have. It’s a little bizarre because our kids can’t get together because of the health risks—but we try and have regular get togethers as often as possible. Having connections with other CF mamas, locally and across the country, is so important. All of our kiddos are different ages and are affected differently by CF, but what bonds us is our warrior mentality.
We moms are stronger together!
Hails from Modesto, California
Lives in Keller
Occupation Regional Marketing Manager for BodyArmor sports drink
Offspring Rhett, 11, and Layla, 9. Layla has cystic fibrosis.
Photo courtesy of Joanna Waller.