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.