10 Things That Are Stressing Me Out More Than My Son’s CF

In the two and a half years since our son's cystic fibrosis diagnosis, we've learned how to build his care into our daily routine and manage his disease to the point that it's almost become -- dare I say -- normal. Here is a list of the top 10 things that are stressing me out more than my son's CF right now.

Nov. 4, 2016 | 5 min read
Erin Taylor

Two weeks ago my son Levi had a cough. Every day that it lingered I became more and more anxious. But after a stressful week of analyzing symptoms, worrying and juggling work schedules so my husband and I could administer extra treatments, the cough went away and so did my anxiety about cystic fibrosis. With the cough out of the picture, our life began to return to our normal -- two rounds of airway clearance a day, child care and the joys of raising a toddler.

Two and a half years after Levi's diagnosis, cystic fibrosis is something we are managing. Sure, some days present challenges, but most days CF doesn't consume me like it did the first year. I'm thankful that today is one of those days.

In fact, here are 10 things that are stressing me out more than my son's CF right now.

  1. Potty training. I just can't seem to get my act together on this one, and I am learning that casually asking a 2-year-old if he wants to use the potty isn't going to work.
  2. My son is buck wild. I know his stubborn and energetic personality is going to take him far in life, but right now, I'm exhausted. I feel like I have to chase a mini Usain Bolt around my house every time I want him to put on shoes and wrestle an alligator to get him into pajamas. The only time he sits during the day is to do his airway clearance.
    I'm raising a spirited child.
  3. Screen time. I hate Peppa Pig, Daniel Tiger and Thomas the Train for making me a liar. I swore I wasn't going to let my child watch television, but he quickly learned how to stream a show from the iPad to the TV and knows more about my phone than I do.
  4. Work. I have three major projects due in the next two weeks, and so many emails yet so little time. Being a working mom is one of the most challenging roles I have ever had to play. I see post-bedtime work in my future this week.
  5. Laundry. It is out of control right now.
  6. Too many cooks in the kitchen. It's so cute and sweet when my son pulls a chair up to the counter and offers to help cook dinner every night, but it is the most stressful part of my day. It's a workout trying to guard him from knives, burners and raw eggs while also preventing a meltdown.
    My assistant chef every night.
  7. Dinner time. Can parents of toddlers agree that this is just plain terrible? As if weight gain wasn't always in the back of our minds, trying to predict which day a toddler will suddenly hate macaroni and cheese is the worst.
  8. Road trips. We have a 13-hour drive from Nashville, Tennessee, to Nebraska planned at the end of the month and they don't make enough fruit snacks in the world to make it fun. I guess I'll be relying on my friends Peppa and Thomas to get us through.
  9. Child care. We are on the hunt to find new child care next year and between the interviews, weeding through wait lists and worrying about germs, it is too much to deal with right now.
  10. Finishing this post on time. I'm finishing this up the evening before it's due. I work so much better under pressure!

Do these stresses make me different than any other parent? No. And that's the point -- I'm a normal mom and we are a normal family. I find comfort in the ways we are not so different from everyone else.

Our family identity is much more than CF.

There was a time when Levi's diagnosis was all I could focus on, but each day that goes by makes it easier for me to see that our family's identity is so much more than CF. CF is something that will always be a part of our life, but it isn't our life. Chores will pile up, timeouts will be handed out and I'll never not need coffee. I don't know what challenges tomorrow may bring, but today it feels pretty good to worry about laundry.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Parents & Guardians

Originally from Nebraska, Erin lives in Nashville, Tenn., where she enjoys staying active and busy with her son Levi, daughter Carolina, and husband Ron. Erin works full-time in corporate communications in addition to writing on a freelance basis. She is passionate about CF advocacy and awareness, participating in year-round fundraising for the CF Foundation, and is a member of Community Voice. In their free time, Erin and her family love traveling, sporting events, and spending time outdoors, all while fitting in her children's daily CF treatments.

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