Being a kid should be fun and carefree. But for children born with a chronic illness, there are many factors to threaten that joyful way of life. For a child living with cystic fibrosis, the responsibility often falls on the parents to not only manage their child's daily health needs and keep them as free from illness as possible, but also to find a way to provide them with a happy childhood that doesn't impose too many restrictions.
I am not an anxious person by nature, but when our first daughter was diagnosed with CF (followed shortly by our second daughter, who was also diagnosed with CF), my husband and I were in a state of panic. We didn't want to take her anywhere, meticulously applied hand sanitizer and felt the need to wipe down every surface she came into contact with. We were even afraid to take her outside for fear that particles in the air might harm her lungs (I'm not even kidding!).
Protecting her at all costs sounded like a loving thing to do until we considered what it may cost her. How would she view the quality of her childhood as she grew older? What would be more important to her: living longer years or living a life full of experiences with the same opportunities as her peers? We decided that giving her the best life we possibly could would require us to consider both.
Social development is undeniably a very important part of childhood, and we believe that both our girls deserve the opportunity to grow up doing all the things that other kids do despite having CF. However, this can be quite frightening for a CF parent. We know how dirty kids can get, how readily they pass germs around and what danger this poses to our children. It is vital that we limit their risk of infection, which means that there will be times when we will have to say “no” to something we would have agreed to otherwise. But at the same time, we also can't let our fears drive every decision; the answer can't always be “no.” We know that we will continually have to release some of our fears and make thoughtful and responsible decisions to limit risks, all while offering ample opportunity for social interaction and normal childhood development.
In order to keep a balance between their health and extracurricular involvement, we must take a prudent approach with careful and creative decision making. Our oldest daughter has a very outgoing personality and is involved in an array of activities including dance, soccer, T-ball, gymnastics and swim team. She has attended preschool, birthday parties, children's museums, playgrounds and amusement parks and has had countless adventures during her five wonderful years. On the larger scale, we have not held her back from anything so far, but we do have to carefully consider the complexities of her disease in most of the decisions we make. And in those moments when we feel she is being limited because of her CF, we try to come up with an alternative plan.
For example, recently, she was being treated for a cough that she had had for about six weeks. We were invited to our annual trip to the lake with family and, as much as we wanted to go, we felt that the lake water might not have been the best option at that time. So instead of going to the lake, we drove to the beach for the day.
In our attempts to prevent the girls from getting sick, we are more conscious of where we allow the girls to go when we know we have a big event coming up (like vacation, a birthday or Christmas). One week, we had to say no to a birthday party invitation after learning that another child attending had a low-grade fever and cough. Another week, that meant avoiding an indoor play space where germs are more likely to thrive and offering an outdoor park instead. Our daughter was scheduled for dance camp the week before vacation, but we decided to delay that until the week after we returned.
So, even though my oldest child is extremely involved and does not appear to be held back because of having cystic fibrosis, it isn't without a careful balancing act. I try my best to ensure that both my children stay as healthy as possible without missing out on the life in front of them or the priceless joy of just being a kid.