By Kris McFalls
Living a normal life is what most people expect when they start a family. But, what if the children are born with a chronic illness?
My memory of the day my youngest son, Keegan, was diagnosed with a primary immune deficiency disease (PIDD) is about as clear as the Seattle sky in the dead of winter. I remember being very concerned about one thing: Will this new treatment interfere with the big camping trip I had organized? A year later when his brother, Konner, was diagnosed, my brain was more like a Seattle spring day - partly cloudy with a good chance of showers. My head was a little clearer, but my eyes were about to let loose a bucket full of moisture.
I will be forever grateful for the advice given to me by my sons’ doctor. She told me that I should not change my expectations for my boys’ lives. As long as my boys were on treatment, I should expect no less and no more from them than any normal kid. Of course, up to that point, Konner was my reference point for normal; nevertheless, I left the appointment feeling like all would be OK.
Back in those days, information about PIDD was hard to come by. The Internet service providers were still start-up companies hoping to strike it big. What little information there was available might as well have been written in a foreign language. Therefore, the doctor’s words and instructions were all that I had on which to formulate a parenting plan. I think in a way I was one of the lucky ones.
Granted, I would have loved to have known other families that were dealing with the same disease at the time of diagnosis. But, even though I didn’t, my dreams for my kids were not changed by virtue of having a chronic disease. They were full of hope, not fear. My expectations for my kids were similar to that of other parents in my neighborhood. I fully expected my kids to be inconvenienced by their treatments, but I never considered them to be sick unless they truly had an acute infection.
Little by little, I learned more about PIDD. As time passed, I also learned that our normal was not very normal, even for families with PIDD. For instance, after my boys’ first infusion, their infusions took place at home with a nurse and no IV pole. They did not get the day off from school; heck, they didn’t even get an early dismissal. Eventually, I learned how to infuse the boys myself, and we dropped the nurse all together. The only other PIDD family I knew also infused their kids at home, so I thought we were perfectly normal in the PIDD world.
It wasn’t until I had the opportunity to meet with other parents and adult PIDD patients at a conference for Immune Deficiency Foundation volunteers that I realized just how big of an anomaly we were at the time. I learned that having a PIDD was anything but normal. I also learned that families sacrificed days, not hours, receiving life-saving treatments and dealing with the side effects. In addition, I found out there were very few parents out there doing treatments at home, let alone doing them on their own. It was only then that I realized just how progressive my sons’ doctor was.
In hindsight, being educated earlier would have been helpful, especially when my kids struggled with infections. But, my early ignorance and expectations of a normal life are what helped us have an extraordinary life for a family living with PIDD. My boys are now grown men doing what I dreamed they would do: living a normal life.
