What do you say to a three-year-old with Cystic Fibrosis when he asks an inevitable question? One that you try to avoid thinking about but also one that you can't stop thinking about. A parent of a child with CF must be one of extreme patience who realizes every action and reaction can make a huge difference in the response of your child.
It is at this point when the question hits hard. I sink into it for a while. A moment to let it settle into my insides as a heavy sigh escapes from my breath. "Well, ..." I begin...as I think out a response...
He waits patiently for the response behind his turquoise eyes and pale hair. Its still hot for late August and he sits in shorts, no shirt. I can't help but notice the hint of ribs against his lean, untanned body. The doctor says he is in the 13th - 15th percentile for his age and weight. The last three appointments with his pulmonologist, she has expressed concern over this- "Weight and lung function are tied together. Just see if you can get him to eat 500 more calories per day." We shared a food chart of his eating habits. This last time, we met with the dietitian on staff. Its all about adding in more calories, boosting fat. We feed him five times a day, packing it in with each meal and snack and he keeps getting taller. This percentile isn't changing. We know that she might suggest the food tube next so we are adamant about getting as much food into him as possible to get him to gain weight.
My tears saturate my eyes. I turn away from him for a moment, away from the dinner table, away from the four capsules of Creon in a small cup near his square plate. I bite my cheek for a moment and swallow hard. The tears slide down my throat and I swallow all my thoughts about it.
At this point, I realize that however I respond will determine how he eats his meal. He's already a slow and very picky eater, but what I say might change how he eats all of his dinners and breakfasts and lunches and snacks from now on. What I say had better be good.
The food waits patiently on his plate- two pieces of chicken sausage with ten grams of protein in each link, fresh cut strawberries, some spinach, a few pieces of cheese and a bowl of Honey Nut Cheerios cereal and milk enhanced with heavy cream and four scoops of calorie-enhancing powder. This is a common meal, nothing new today. He's read about digestion. He clearly understands the process and how we get energy from food. And this meal is one he's eaten many times before without the need to ask this question. Why now at the dinner table before bedtime?
Only moments have gone by but it feels like my mind has been going through this moment forever. Planning, thinking, rethinking. I wonder how much of an answer is too much, how much is too little. Is this the inevitable moment when we sit him down and explain Cystic Fibrosis? This dreadful moment his incurable illness is revealed? No. It is too soon for this type of talk. Much more planning goes into that type of talk than the fear that he might decide he doesn't like chicken sausage and strawberries and spinach and the whole lot tonight because he "doesn't like them anymore." It has to be enough of a response to satisfy his curiosity. It has to be understanding enough that he doesn't feel strange or different because he has to take pills for every meal and snack. It has to be broken down enough so that his three-year-old mind can understand. Would making mention of the digestive process help? Explain how the enzymes actually work? Is this too much at the dinner table before bed? What about the tone of my voice- more serious or lighthearted?
I turn toward him while preparing a cup of tea and decide to use a casual tone of voice. I need to make him understand that it is just something that is as ordinary as talking, or chewing or breathing. He looks up at me with those blue eyes and inside I melt. His brother looks at me too; his hazel eyes searching for an answer. I note the obvious contrast between their two silhouettes as they sit side by side. His big brother is exactly 17 months older and his height and weight are in the 80-90th percentile. He's almost an entire foot taller and more than fifteen pounds heavier. He doesn't have CF.
I pour the hot water into my cup and dip a tea bag into the water to give myself one last moment, one last thought of how to say this. And then I go for it:
"Some people take pills with their meals and snacks and some people don't." Then, I shrug to make it seem like no big deal.
I look waiting for his response. Will he ask another question? Will I need to go further down the rabbit hole?
"Okay mommy," he smiles. "I love you." Then, popping all four pills into his mouth at once, he drinks them all down with one gulp and then starts to spoon in his cereal.
"I love you too, buddy," I say as I lightly sigh relief. But I can't help but wonder, when this will come up again.