Sadly, there isn't a flow chart that can adequately help us know how to discuss our disease with a child when they inevitably ask a spur of the moment, awkward question. And for that reason I wrote this blog...
If you were a regular at my house, then you would hear on occasion me yelling, “La, la, la, la, la!” I know it is a bit unusual so let me explain. I have three small children and quite often trailers for scary movies are advertised during television programs we watch. The remote is not always within reach so to keep our kids from getting scared, my husband and I yell and distract our kids until the commercial ends. We do this because we like our children to have boundaries.
Boundaries are good. It is good to exercise these boundaries when talking with young ones that are close to you as they ask you questions about PAH. Auntie, why do you always go to the doctor? Mommy, why does sister have that in her chest? Why are daddy’s lips blue? Not all of us are parents, but many of us have a relative, neighbor or a friend’s child that we love. How then is the best way to discuss with a child the topic of PAH?
The most important key is to wait for them to ask and when they do ask have your answer ready. The specifics of how to answer vary based on what you are comfortable with disclosing and the age of the inquisitive child. Some things to avoid include death, life expectancy and the overall severity of the disease. It is best to gear the conversation towards more positive aspects such as the quantity and quality of treatment available.
A few days ago while I was inhaling my Tyvaso, my three-year-old daughter looked up from playing and asked me, “Mommy, why do you have to do that?” I briefly said, “Well because I need my medicine.” Her follow up question was, “After you’re done can I have a snack?” At the time that was all that was needed to ease her curiosity. Her three-year-old mind is still developing, and it is best to keep boundaries on the depth to which I respond. The questions will need a more in depth response as she gets older, but for now that meets her needs.
It has been difficult for me to process how I should introduce my children to the fact that I live with a disease. The one thing that I keep going back to is the wisdom that “There is a time for everything, and a season for every activity under heaven.” (Solomon) We must implement boundaries on the information we disclose while also disclosing enough to educate them. Some children will be very curious while others will barely notice, but as the adult, it is our responsibility to help them understand.