Answering the Hard Questions

As Margo has grown and become more aware that her cystic fibrosis (CF) is something that makes her different, she has started asking more difficult questions. Some of these questions are driven by curiosity, while others are like a gut punch. I struggle so much with the harder questions because I don’t have answers for her, or the answers I do have are simply not fair.

Here are a few examples of some of the trickier questions or statements I’ve heard in recent months. (Please note that these questions come from a 5-year-old’s view of the world, so aren’t 100% correct.)

“My friend used to have asthma but doesn’t anymore! When will my cystic fibrosis go away?”

This was one of the first times we had to explain to Margo that CF is a disease that doesn’t go away and that at this point in her life, there is no cure. This was really hard. She seemed so genuinely excited to see that her friend no longer had asthma (clarification: he no longer needed his inhaler in the summer months as he rarely experienced asmatic exacerbations), so she genuinely thought it would be the same for her.

We took time to connect this conversation to a wider conversation about all the hard work we put into fundraising for Margo on the Move, and how that money we raise will hopefully connect us to a cure. I’m sure some of this might be difficult to understand but I hope through continuous conversations with her, she might begin to feel hopeful that we are actually doing something to find a cure.

“Why do I have to take all these medicines and you don’t?”

This was an easier one to answer because she’s incorrect- I do take medicine everyday. Because I have congenital hypothyroidism, I’ve taken medicine every day since I was two weeks old. When she said this, I took her and showed her my pills and pill box. I explained what they were for and what would happen if I didn’t take them. Granted, Margo takes a significant amount of pills every day just to keep herself healthy. There is a huge difference and I made sure to recognize that.

But I wanted to normalize taking medicine to keep ourselves healthy. I pointed out that Daddy takes a multivitamin every day, and eventually her little sister will as well. Her grandfather has diabetes and has to take insulin every day—this one was eye-opening for her.

“Can I die from cystic fibrosis?”

Talk about a gut punch. No parent wants to think about this and I’m sure anyone would find it as difficult to answer as I did. However, data was on my side. With the incredible advances in medicine and treatment, the life expectancy of someone with CF will only continue to rise over Margo's lifetime. I felt like this was a little bit more information than necessary to tell her, so I told her the truth: yes. You can. But in order for that to happen, your health would have to decline rapidly.

I explained how her medicine, treatments, and regular exercise help her grow and be healthy and prevent her from getting sick. This led to a bigger conversation about death and heaven and what we believe, but I tried to take the emphasis away from CF and more on a life and death conversation appropriate for a five year old.

“I hate cystic fibrosis! Why do I have it and no one else does?”

This one I could only hold her close, kiss her head, and agree with her. CF is tough. Being a 5-year-old with CF is hard work. Just to maintain her baseline of health, she has to work so hard. So many pills, so many hours a week attached to her vest and nebulizer. Clinic every three months, which is long and boring and filled with PFTs and throat swabs and annual chest x-rays and blood work. She can’t be around other kids with it so it feels very isolating.

I still don’t have an answer to this. I usually listen and validate and let her feel her big feelings, because I want her to feel safe in telling me this.

Not every moment is hard, though. The pride I feel when I hear her explain to someone that she has cystic fibrosis and has to take pills, or that she’s wearing a mask to protect herself because of it, is immeasurable. She is an extremely self-aware little girl and i know that quality will help her through the difficult times of cystic fibrosis down the road.