“Mommy, am I going to die?”
These six words form a question that no parent is ever really ready to hear or answer. When this question comes from a child with cystic fibrosis or any other potentially life-threatening condition, the conversation that follows can be even more difficult.
As the parent of two boys with CF, I've been asked this question in one form or another many times over the years. I don't think it's unusual for kids to want to know about death and dying. However, for children who know that they are fighting a disease that could potentially end their life, these questions can take on a bit more significance. As their parent, you grapple with how to respond and how much information you should share with them.
Every time that my kids have asked me this question, I responded in a manner that I felt was appropriate for their age and maturity level, while also making sure they knew that yes, they will die; we all will one day. When my kids were around the age of 4 or 5, I kept my answers brief by telling them that everyone is going to die someday.
Unfortunately, we don't know how or when this will happen, so it's important that we do our best to enjoy the time we have together now. This was usually enough to satisfy their need for answers or reassurance.
Inevitably, they eventually began to ask follow-up questions, such as, “How and when am I going to die?” or, “Is CF going to make me die?” For these, my response has always been, “I don't know,” because honestly, I don't. No one does. My kids wouldn't be asking me these questions if they didn't have doubts or suspicions about their health, so I feel that it is extremely important to be honest and forthright with them. The key, however, is to answer their questions without creating more fear or anxiety, while also fostering reassurance -- not always an easy thing to do.
As they got older, I knew that I wanted to be the one to share the information about the median predicted survival age for people with CF. I didn't want them to find it out from a Google search or hear it from someone else. So when they asked, I told them that CF may be the reason why they die, but there are a lot of other things that could be too: car accidents, heart attacks or simply old age. I may have also mentioned getting eaten by a bear as a potential cause of death … (Humor can be important too, especially when you're talking to kids about a weighty topic like mortality.)
I am also quick to point out that even though the median predicted survival age has been increasing over the years, it is not a guarantee, as there are no guarantees in life. I might also remind them that they could get eaten by a bear tomorrow on their way to the bus. It's incredibly important to keep your children's personality and overall attitude about their disease in mind when having these difficult conversations. Humor works in our family, but keeping the conversation more straightforward may work better for yours.
Overall, conversations about death should not be something to be feared or ignored. Death is the inevitable end that all of us will reach at some point. Luckily, we have the privilege of deciding how we want to fill the time before we get there.
In addition to answering my sons' questions about death, dying and CF, I am also continuously reminding them about living. I tell them that they are doing everything they can to stay healthy when they take their medications and do their chest physical therapy. At the same time, I make sure that they are living their lives to the fullest each and every day … even when that means no video games until their homework is complete.
And as my 15-year-old said recently, “Mom, it's life. No one makes it out alive.” So true.