Cystic Fibrosis: Parenting When Your Child Is Chronically-ill

If you have spent any time on social media, you have likely seen the meme that says,

“Everyone you meet is fighting a battle you know nothing about. Be kind, always.”

As corny as the saying is, it’s true; everyone is fighting something. Maybe something we have never even heard of.

In Providence, RI Shannon gathers the materials necessary to homeschool her two girls for the day. Her oldest daughter is ten, and her youngest is seven. Their day is filled to the brim with reading, math, music, cooking, cleaning and martial arts practice. Sounds challenging enough. But, added to Shannon’s and her family’s demanding schedule is something else. A chronic illness called Cystic Fibrosis. An illness that seven-year-old Aubrie has been battling her entire life.

I don’t know about you, but before I met Shannon, I didn’t know anything about Cystic Fibrosis aside from an episode of House I watched years ago. So when my good friend shared the news of Aubrie’s diagnosis, I had a LOT of questions.

I hope this interview with Shannon helps give you a glimpse of what life is like managing cystic fibrosis in addition to the everyday challenges of motherhood.

What is Cystic Fibrosis?

Cystic fibrosis (CF) is a rare, chronic, and genetic disease that affects the lungs, pancreas, and other organs.  It’s a progressive disease that causes lung infections and limits the ability to breathe over time.

When did you find out that Cystic Fibrosis was a possible diagnosis for Aubrie?

We found out that it was a possibility about half-way through my pregnancy. One of the blood tests showed I was a CF carrier so they tested my husband who, as it turns out, is also a carrier.  

What does daily management of Cystic Fibrosis look like?

Aubrie has a lot of extra routines that include daily vitamins, pancreatic enzyme replacement meds every single time she eats, and a vest machine she wears at least 3 times a day that helps her lungs clean out mucus. Every time she does her vest treatment she also uses her nebulizer. There are actually two different nebulizer meds  she’ll switch between throughout the day. One is called hypertonic saline- it aggravates her bronchioles and basically acts as a scouring pad to clean up the lung tubes. The other one is called Pulmozyme and it liquifies the mucus.

How often do you have to go to the doctor?

Aubrie generally visits the Cystic Fibrosis clinic every 6-8 weeks. When she was a baby it was every couple of weeks.

What preventative things do you do to keep Aubrie as safe as possible?

Aside from the medicine and vest treatments, we avoid sickness as best we can and stay as clean as possible. What that tangibly looks like is avoiding people who are sick or even possibly sick. People who are sniffly, coughing, etc. we avoid because to us it may as well be the plague! Aubrie also wears a mask over her mouth and nose that helps prevent germs from spreading while she is in indoor public places.

Our family and friends are sure to remove their shoes and wash their hands (and maybe even feet) before entering our home.

With compromised lungs, does Aubrie have to limit her physical activity?

 No, actually exercise is very good for her. It helps keep her and her lungs healthy and strong, just like everyone else!

How has cystic fibrosis affected the way you mother your children?

I wish I could say that I treat her just like I’d treat her without CF, but it’s hard. SO freaking hard. Knowing that this stupid disease is most likely going to be the thing that takes her in the end shatters my heart into pieces. I am able to hold it together and do the things I need to do as a special needs mom, but I’ll tell you that when every day is full of medicine, treatments, and worrying about a sickness that can slowly and painfully ruin her lungs, feels like an underwater roller coaster. It can just be so overwhelming.

What inspires you to keep going?

Every day has been touch and go, but thankfully she has been extremely healthy all things considered. The only hope that I can honestly cling to is the hope I have in Christ. 

What ways can friends and family help support you?

Honestly, we feel the most supported when people pour into our lives and fight CF alongside Aubrie. Normalizing everything about her lifestyle and routine and just being there with her. Play a game with her while she does her treatments and generally just love her through and through. We don’t really have strong family ties, but we have a lot of friends at our martial arts dojo and our church that pour into our lives and we couldn’t be more blessed!! In addition, we have a team of cyclists that fundraise and ride each year.

To learn more about cystic fibrosis please visit https://www.cff.org.  Approximately 3o,000 people in the US battle this disease, and more than 75% of those are diagnosed by age two. Each year about 1,000 people are diagnosed with cystic fibrosis. That means that Shannon, Aubrie and their family are only one of many families who need our love and support. While they navigate and fight this battle, let us fight alongside them by spreading awareness and finding practical ways to support them.