10 Ways To Redefine Success as a Parent of a Kid With CF

I used to feel as if I was failing in my child's cystic fibrosis care. Here's how I learned to let these feelings go.

| 4 min read
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Angela Spencer
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Failure. As a mother of a child with cystic fibrosis, it seems that this feeling is ever present.

I give 100 percent to the care of my daughter, Raelyn, and despite this, I go to clinic and there always seems to be something that needs more work. My child needs to improve lung function so I need to be doing more treatments. She needs to gain more weight. She needs to add more medications, needs more tests, and on and on. Sometimes it feels like no matter what I do, it still isn't enough. This has led me to feel like I am failing my daughter in some way.

The harsh truth is that this disease is progressive. And on those terms, if I see needing to do more as failure, then I am inevitably going to fail. So how do I deal with the constant feeling of failure without completely feeling defeated, giving up, or losing hope?

I have begun to rethink “failure” and success, and here's what I've learned:

  1. Find the small successes. Small successes are still successes. So, your CFer didn't hit their goal weight, but they did gain -- boom! Success. Pulmonary function tests (PFTs) aren't where they need to be, but they did increase a little -- boom! Success. Lungs don't sound great, but they sound better than the last visit -- boom! Success.
  2. Celebrate these successes, both big and small. Go out to dinner, treat yourself to a massage, take a mini weekend, have a pedicure with your best friend, splurge on that pair of shoes, etc.
  3. Don't define success by one outcome. Every person with CF will have different measures for success, and that is okay.
  4. Redefine what a good clinic visit means. At the end of the day, no matter what was said at your appointment, not being admitted to the hospital counts as an overall “good” visit.
  5. Let go of the guilt. You may feel that you failed to do all of your child's daily care. Accept that nobody is perfect and live to fight another day. 
  6. Talk to others. Talk to your child's care team, other CF parents, your spouse, your friends, and, possibly, even a professional therapist. This disease has a way of making you feel isolated and feel as though no one understands. Therefore, we tend to clam up. Talking to others about your feelings is a stress reliever and therapy in itself.
  7. Be patient. This is a marathon and not a sprint.
  8. Do some research. For me, research helps me understand the issues on a deeper level, and gives me the feeling of being “one up” on CF.
  9. Be persistent. Be the antibiotic that relentlessly beats on the pathogen regardless of if it successfully eradicates it or not. (Yes, I know. That was spoken like a true CF mom.)
  10. Maintain hope. Achieving success can seem daunting. Give yourself a pep talk and focus on all of the possible positives that can happen and have happened.

Most importantly, take a deep breath, recoup, and confidently and aggressively attack this disease again. Learning that your child didn't gain enough weight or facing other improvements that need to be made to benefit your child's health may be tough to hear as a parent. But the battle isn't over. Just breathe. You've got this!

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Angela is mother to her daughter, Raelyn, who was diagnosed with cystic fibrosis at 2 weeks old. With a bachelor's degree in elementary education and passion for photography, Angela now devotes her time and efforts to volunteering for her local Cystic Fibrosis Foundation chapter. She is a member of the Northshore Great Strides committee, an advocate, fundraiser, photographer, and speaker for her local chapter. Her family serves as an ambassador family for the CF Foundation. Angela lives in Slidell, La., with Raelyn, her husband, Paul, and their dog, Delta. 

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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.