How we have a social life while protecting our child with CF
It's not easy to miss events, but our daughter's health is more important
When I hear a cough in public, my body tenses up and I immediately start scanning the room to see where it originated. (As a cystic fibrosis (CF) mom, I can usually find the source within seconds.) Then I try to make sure my daughter, Claire, who is 4 and has CF, is as far away from the coughing person as possible.
But what happens when we are in a social setting hanging out with friends and their kid has a cough? Do we leave? Do we stay? Well, it’s complicated.
When Claire was born, my husband and I decided that we wanted to create as normal a life as possible for her. We wanted her to go to school, travel, and build relationships with others outside of our family. Yet, all of these activities pose a certain level of danger for her. Coming to terms with exposing our daughter to potentially life-threatening situations has been a constant struggle. Some days it is easier than others.
An evolving risk analysis
During fall and winter, when we are at a higher risk of contracting a viral illness, we are more picky about our interactions. It was actually easier to stay healthy during the early days of the COVID-19 pandemic because everybody was interacting less during the winter months. But now we can’t avoid coughing kids at school performances and social gatherings.
However, certain transitions in our family life have changed how we analyze what we are comfortable with. Claire attends school full time now, and her increased exposure to viruses there has altered how we assess risks and socialize with others. As scary as that uncontrolled environment is, it has led to us loosening our standards elsewhere because we figure she is already at risk regardless.
Still, we are not reckless with the types of settings we expose her to. We frequently engage in an analysis to see if certain situations are worth the risk. We ask our closest friends and families to let us know if they are sick or have been sick recently, and then we think about seemingly small details like whether an event is outdoors or if there will be communal food. Once we collect the information, we weigh all the factors before deciding whether to participate.
It’s our choice to skip certain events
Sometimes we have to pass on invitations to activities. That can feel isolating, but I know I’m protecting not only Claire’s health but also my energy, which takes a blow if she gets sick. I don’t want to guide her life decisions based on my mental health, but sometimes an event is just not worth the stress and aftermath of an illness.
It has taken time, though, for me to be comfortable with being the family that has to miss out on social events. Many times we opt out at the last minute if we are notified of someone being ill, and that can feel unfair and punitive. However, I know most people don’t have our perspective and don’t understand how an illness can affect our family for the weeks, months, or years to come.
When we do decide to attend social events, we know we are taking chances. A friend told me she was terrified I would be mad at her if one of her children got Claire sick, and I completely understood why she felt that way. I explained to her the heavy consideration we put into decisions to put her in certain settings, stressing that once we decide to do something, we go all in knowingly. We have to let go of control, which can be terrifying.
Many times that simply means we may be in an environment with someone who is sick. When that occurs, I try to mitigate as much as possible. It can be exhausting, because that usually means following my daughter around, constantly sanitizing her hands, and trying to create distance between her and whoever is sick.
Do coughs and illnesses still scare me? 100%. Do I let the fear of them affect our decisions? To an extent. Others may judge and criticize our decisions, but ultimately we are the ones who have to live this life. And I truly believe that each family knows what’s best for their child with cystic fibrosis.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to cystic fibrosis.
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Comments
Paul Denman
My son Joe is 36 We were told he wouldnt live to be 8 when he was born.
My advice. No one comes to your house who has a sore throat or more obviously a cold. If they do you ask them to leave. Some one coughs in a cinema move. Everyone gettin sick at school dont send her. Enclosed spaces is where germs can be passed on. No. No No. Hospitals you will have to go into. No one knows your daughter like you do. Dont be afraid to say no to them or suggest something they might not have considered, you dont have to do what they say. Best place to get sick? A hospital....massive risk of cross infection. Do Home IVs as soon as you can that wont be till she's around 15ish
Pretty soon youll know more that the Doctors!.We have the most amazing team at the Keck USC in LA its the adult center. They are absolutly wonderful I dont have words for how far they have gone to accommodate us and Joe is Family to them.Im not sure what we would have done without their amazing care and love for Joe. Work with your team ask questions learn everything. Diet Nutrition Exercise, Drugs and their side effects. Are you at Children's? Find out everything you can. Research. You know what is best for Her. Listen for those little coughs that tell you somthing is brewing. And get her straight down to your team if you're even slightly woried. Make those bold decisions. Dont b afraid to. It's a life we are talking about. Not some stupid party.
Have a meeting at the school with all the teachers present.and explain to them how dangerous a cold can be. Let them know the facts and how important it is they help you protect your daughter. They need to tell you if someone is coughing in class or if there is a virus going round. They will do this. Parents? Forget it. No matter how sympathetic they are they will never understand what you are going thru not ever. Dont expect them to."But she looks so well" Only you will know how vigilant you have to be. And the risks involved in what you are doing.
Treatments have come a long way since my son was born. Trikafta is a must. We live in USA although we are British. We came here so my son could have a better life when he was 4 and go to Disneyland every weekend till the end came.We did.... But it didnt! We have had heartbreak and sorrow. He nearly died twice. But he has toured the World with his band, Orange, got a record deal at 16 and has had a life most people would envy. Thanks to Dr Rao, Debbie and the team we were litterally the first people in USA to get Trikafta. We got it then day it was approved. It's been a life saver for Joe. You will get thru this. I can tell from the tone of your post that you're just on the edge of thinking you are being too protective. You are not. You need Love and Luck and dont switch off. The minute you do CF bites back. There is a massive possibility that your daughter will have a "Normal" life. Dont loose Faith be determined and Believe. Positivity is gonna be one of your go to Tools. I hope with all my heart you dont have to go thru what we did with Joe. Just as an example he has been hospitalised at least 50 times, probably more. Im pretty certain you wont have to endure that. At the moment Joe is fitter than he has ever been and has the best lung function he has had since becoming an Adult at 21.Trikafta Trikafta Trikafta. It's not all bad! Dont be Afraid, meet CF fully head on and Enjoy the good times. There will b a lot of them. xx
Paul D Clayton
Both the OP, Jennifer, and comment by Paul are spot on. We were warned our daughter may not see a tenth birthday at our first meeting with the head of Ped. Pulmonary when she was five. She is now thirty-five. Hang in there. Or as my mom would say, Keep on Truckin'.