Allowing Our Child to Experience Normal

Finding out that your baby has CF is such a scary, unsettling time. Your mind goes to the one thing that you know you can control: The outside world.

You want to keep your child in a bubble.

You want to shelter them from everything.

The world is now dangerous in your eyes. Everything could cause a domino effect of illness and hospitalizations.

The outside world seemed dangerous

This is the mindset of a parent with a newly diagnosed child with CF. The outside world is the enemy and you have to do everything in your power to keep your baby from it.

I felt this way, too. I wanted our son to stay safe and illness-free. Grocery stores and public places were out of the question. I made up my mind early on that I was ok with never seeing the outside world again if it meant that our son stayed healthy. No public places, no stores, no anything.

As our son grew, we would venture out here and there, but based on the time of the year (hello RSV season), he was inside. It wasn’t until he was around 1 and a half that we started venturing out more. The more we went out, the more our minds changed.

Removing our son from his bubble

Maybe we had the wrong outlook about things. Maybe we could mix safety with people.

Little by little, we took him places. We went to birthday parties, the splash pad, parks, the zoo, the beach. We took him out of the bubble that we had created and an amazing thing happened: He stayed healthy.

As he grew, so did our mindset. I no longer wanted him to be in a bubble. I wanted him to experience everything. We discovered our love of travel and our love of trip-planning. For Christmas, our kids get a big trip for the following year. Every year we try to go someplace new and exciting.

Our son has visited every major U.S. city, has been to 20+ states, has played sports, spent the night with friends, played in the ocean, ridden on subways, and has seen national parks. He has been to the country’s most well-known museums. He has been on countless flights. He has been to Major League Baseball games. He has seen so many incredible things and he isn’t even a teenager yet.

I saw him thriving at a young age and I knew my dream for him was to never be isolated again. He is going to spend a lot of time in the hospital as he gets older so while he is healthy and strong, I want to take advantage of that.

My advice for new CF parents

If I could tell new CF parents one thing it’s this: Allow your child to see everything they can. Do your part to keep them healthy but don’t keep them from having fun. Let them experience new things. Let them discover things. Your fear is valid, however, don’t isolate them. Get out and go on adventures together. See the world together.

Make as many memories as you can. CF is a rollercoaster of a disease, so while your child is able to, get out there and do everything you can. You will never regret the time spent together and your child will feel as close to normal as they can.