Advice to New CF Parents From an Adult With CF

For parents of a child newly diagnosed with cystic fibrosis, it can be scary to read what's online about CF. However, I want to shed some light and positivity on what it's like to have CF. Everyone with CF is different, and it's possible for your child to lead a full life.

| 5 min read
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Matt Cicardi
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In the past couple of years that I've been on Instagram, I've seen a lot of posts about cystic fibrosis and how everyone deals with it on a daily basis. I was a very healthy child and teenager. Back then, we didn't have social media. I only ever knew one other child with cystic fibrosis and that was in preschool. So, for the past 25-30 years, I didn't know anything about how other people lived with this disease. I figured most were healthy just like me. I played sports year-round from about age 3 through 18. I've always been able to go to the gym and exercise a few times a week. Sure, I've had some hiccups with my lungs, but nothing major. I've had somewhere between 13-15 sinus polyp surgeries (I lost track after a while!). My problems with CF are my sinuses and my intestines. I've had a few intestinal blockages as well and -- let me tell you -- they're awful. But on the bright side, my lungs have always been pretty clear.

Upon seeing so many posts from CFers in the hospital, hooked up to tubes, taking 100 pills a day, it made me sad. I had no idea so many were suffering because I never have. It broke my heart. For new parents who search on social media about CF, I am sure you have become scared. No one ever wants to see their child like that.

But, always worrying about CF is just not my style. Sure, I've been lucky. I get that; trust me. But, I feel that new parents need to see the flip side as well.

Not every child born with CF will have tubes and needles in them 24/7. Not every child will need a feeding tube.

Not every child will need a lung transplant or have to live in the hospital. Yes, there are those who will, and it's important to always be honest with yourself.

The biggest takeaway about this blog post should be this: Everyone with CF is different, but we're all the same. What's abnormal to someone without CF is just a normal day for those of us with CF.

CFers don't know any other way than to fight and then move on with their day.

The best part is that even if your child has difficulties with this disease, every single CFer that I've ever known or seen has been a fighter. It's in our blood, like it or not. We don't give up. We don't stay down. We get mad at CF, and we get back up. If it knocks us down again, we get up again. We don't know any other way. As Captain America says every time he gets knocked down, “I can do this all day.”

I've held a job in one form or another since I was 13. I was able to go to college; I got married to the most wonderful person on the planet, and we bought a house. I am doing everything that a person without CF would do, and I've done it all with CF.

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The best part about being a new parent to a child with CF is the introduction of Trikafta®. This medication has changed CF and has made miracles possible. Hopefully soon, we will see a world where CF children may never know what the inside of a hospital room even looks like. Medicine has advanced to the point where significant improvements to daily life are possible, and as a new parent I would be so excited.

Always focus on the positive. Yes, the negative thoughts will happen. We are only human, after all. But there is so much to be grateful for, and I hope you see my story as a source of inspiration. Cfers don't want pity. We don't want to feel different because we aren't. We're just a little wheezy. I am going to be 33 years old next month, and my life is just starting. I can't wait until your children are able to say the same. Peace and love to you all. Take care.

Interested in sharing your story? The CF Community Blog wants to hear from you.

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Topics
Parents & Guardians | Diagnosis
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I am 32 years old and live with my wife and two rescue dogs, Annie and Sawyer. I grew up in beautiful Saratoga Springs, N.Y., and I love to play guitar, relax outdoors, and watch movies and baseball (Go Yankees!). My wife and I love live music and every year we see numerous concerts at Saratoga Performing Arts Center. You can find me on Facebook or search my Instagram.

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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.