Every now and then I get emails or phone calls from parents (usually who’s kids have gotten Recreation Grants from us) who have questions about various things having to do with Cystic Fibrosis (CF). Because I have CF and I’m an adult they must feel I have some insight into the situation. I'm definitely not an expert, but I decided to compile a list of some non-medical advice for parents of kids who have CF. Half-way through making it, and at about #20, I realized there were really two lists I was creating, one for young kids and one for older kids/teenagers. So, I decided to split them up since the experiences for younger kids and older kids differ so much. So here is the list for younger kids, and next time I'll do the one for older kids:

1. Carpe Diem (Seize the day)- Chances are as a parent to someone with CF you already have a better understanding of this phrase. You may have thought you were living everyday to the fullest before, but now you have a child who has changed that and magnified it by 1,000. Don’t put things off thinking you will do them “one day,” if they’re important to you and your family, find a way to make them happen.

2. Don’t be afraid to lay down the law. Treat them like you would any child but emphasize the importance or finding and establishing a routine so that when they’re on their own they can do things for themselves. Teach responsibility, discipline, and independency in all things and (hopefully) they will take that into CF related things, like taking medications and doing treatments. The best bit of advice my first CF doctor gave my parents shortly after my diagnosis at around 1 year old, was that they should treat me just like they would my brothers. Which meant, like my brothers, I didn't get away with much.

3. Talk openly about it. The more open you are in your family about talking about CF and the many aspects that come with it, the easier it will be for them to not only talk about it, but also process all of it. Help them find and understand the language to use to tell you how they’re feeling, both physically and emotionally. If there isn’t an open and honest dialogue about it from a young age then there probably won’t be one when they get older. 

Being able to listen to your body and tell the people around you what you’re feeling and thinking is a skill everyone should have.

4. Let them be a kid. Let them get dirty. Let them be a little (or a lot) crazy. I know there are always going to be concerns about kids with CF coming into contact with germs and getting sick but there also needs to be a balance of letting your child be wild and free vs. having them live in a bubble all the time. 

Find that balance and learn to let go of the things that are out of your control. And don’t be afraid to get dirty and crazy with them. The benefits of those moments of joy go a lot further than you might think.

5. Mind over matter- Believe that they have a future and instill that belief in them. I truly feel that one of the biggest barriers with CF is truly believing that you have a future and that it can look however you want it to look. Yes, there will be disappointments, and let downs, and times to regroup, and times to turn to plan b, but if you’re always waiting for the next time your kid is sick then that time will come sooner than if you weren’t. It has taken me a long time to understand this. I’m now 33 and know that the more I focus on being sick, the more sick I get.

6. Stop googling, start living. There’s a difference between educating yourself about CF and obsessing over it. Googling symptoms all day isn’t going to help anyone. There are good resources out there that are helpful and supportive and trust-worthy and most of them aren’t going to come to you late at night sitting alone at your computer.

8. Let them take the lead (when it’s time). My parents let me decide who knew about my CF, which for me meant not a lot of people knew, which is just my personality. My family of course knew and our close friends, but when I was in school my parents let me take the lead on who got to know. I was also in charge of taking my own enzymes from a young age and I felt proud and mature because of it, and as a result, took it very seriously. 

By putting that trust and responsibility on me I was able to feel that it was more in my control, which CF can often feel like it’s not.

9. Enjoy the moments. Not just because they have CF, but because they’re kids and soon they won’t be. Time flies by and if you’re doing your job as parents soon your baby won’t be a baby and you will want those moments back. Hug your kids. Laugh A LOT. And take tons of pictures.

10. Take care of yourself so you can be there, and be the best version of yourself, for them. Be honest with yourself and your family about how you’re feeling, physically and mentally rather than pushing it aside. Give yourself permission to laugh even when things are hard. Or cry when things are even harder. Find ways to relive stress and find happiness, whether that be going for a walk alone each day, exercising, going out with friends, getting a massage, even just going to the grocery store to walk down the aisles aimlessly, whatever. Find something that is just yours, that you enjoy, and do it regularly.

11. Take it one day at a time. Tomorrow is not promised for anyone, CF or not. You could lose yourself completely thinking only about what tomorrow will bring, what next year will bring, what ten years from now will bring, but it won’t get you anywhere. 

Slow yourself down and remember that today is all that matters.

12. Learn to go with the flow. Don’t stress about the small things. A million things could (and sometimes do) go wrong in a day. Make a choice not to get caught up in them. Ask yourself, does it really matter? Will this matter in five years? So much of having CF, or having a child with CF is out of your control, which can be hard, especially for people who like to be in control at all times. But it can also feel like a relief and be empowering to learn how to let go of those things. I’m the type of person who likes to be in control but I also love to give the control over. Like on a rollercoaster or an airplane, for instance. 

I love that feeling right before takeoff when you buckle yourself in and look out the window and think, okay, whatever happens, happens, and then you get to just sit back and enjoy the ride.

13. Teach them healthy, active, positive behaviors. Which means first being a role model of these things. My parents were always (and still are today) very active and so naturally my brothers and I were very active right from the start. We also grew up “in the middle of nowhere,” as I used to tell my friends, and didn’t have a TV, so playing outside, being creative, playing sports, exploring and swimming in my grandparents pool was all we did. We also ate incredibly healthy foods, my mom has always had a garden, and regardless of how often I begged for Cap’n Crunch I had to settle for the (delicious) granola she made. It wasn’t until I was in my 20’s that I realized just how lucky I was to grow up the way I did. I’ve carried those behaviors and lifestyle choices into my adult life and I’m still very active and eat really well which I now know is a huge, and often overlooked, aspect of living a full, happy, and healthy life with CF.

 

Help Others Live STRONGER and LONGER- 

 

 

 

Erin Evans is 33 years old and lives in Vermont with her husband and dog in the beautiful house they built. She was diagnosed with cystic fibrosis around 1 year old. She has been the Program Coordinator for the Cystic Fibrosis Lifestyle Foundation since 2007. To contact her with questions, comments, or to submit a guest blog email her at: erin@cflf.org

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation***   

 

To receive an e-mail notification and link to the new CFLF blog post each week please e-mail erin@cflf.org to be added to our list.