With Our Son, CF Might Be the Least of Our Problems
Last updated: May 2021
As I watch my 20-month-old son spin around with his eyes closed, laughing the whole time and blissfully – maybe purposefully? – unaware of how close he somehow simultaneously is to every single corner of every single table or piece of furniture we own, I can’t help but think: cystic fibrosis is the least of our problems.
As he somehow dismantles electrical outlet covers so that he can try to insert a variety of other things – some electrical appliances, some not – I can’t help but think: cystic fibrosis is the least of our problems.
As he cries when we don’t let him help us empty the dishwasher and then, when we do, deafeningly shriek when we take away the knife – the sharper the better! – that is his first order of business, I can’t help but think: cystic fibrosis is the least of our problems.
We have a few things to worry about
Yes, our kid has CF. It is tough and, as a progressive condition, it will throw endless obstacles and hardships our way. The combination of medicines and physical chest therapy will continue to fill up his life and be prioritized within his and our daily routines.
CF is and will always play a significant role in our lives. But, at this moment in time, I... wait... oh my goodness... how did he just climb on top of that table? And why is he, a kid who yells ”down” whenever I try to sit him on a counter while I’m still holding him, standing on top of that table?
He's a mischievous kid
I swear this child – this wonderful, adorable, sweet, daring, wild, devious child – wants to end up in the hospital. I feel like he’s angling for a concussion but would settle for severe electrocution. The question is not whether he is planning to break a bone; it’s how many broken bones are his ultimate goal.
This kid has never met a child-proof device he hasn’t proven faulty or somehow ripped apart with his bare hands. And trying to coax him away from doing something dangerous only further feeds his unbridled need to do said dangerous thing.
That’s not to say he’s never willing to compromise or become a little less dangerous. He only walks, runs, and twirls around with his eyes closed inside the house now, instead of when we’re walking around outside and cars are driving down the street. So... progress?
We can handle CF
I’m obviously being a bit hyperbolic and tongue-in-cheek here, but I think it’s safe to say we could be dealing with a few doctor visits or urgent care trips with this kid.
Yes, he has been in the hospital a few times for CF-related concerns. But something about those situations seems routine or par for the course. I don’t know what it is, but I’m less worried about those past (and future, obviously) CF-related visits than I am about the master plan he has to completely destroy his toddler body.
I think the reason is a mixture of three things. First, the current and evolving state of effective CF-related treatments, especially in just the two years that we’ve been part of the CF community, and his amazing medical team have given us a more positive outlook on what it means to raise a kid with CF. Second, as he gets older, making sure he gets the medicines and treatments he needs has simply become routine; we no longer think of CF as an interloper in our lives. Finally, and I can’t stress this enough, this child is a bull and the world – or, at the very least, our house – is his china shop.
He's a kid who happens to have CF
He’s a kid. He’s going to do what little kids do – although I don’t remember our older son ever trying to walk right off the side of his changing table. And we are so lucky that the state of CF right now is such that, as long as we stay consistent and vigilant with his treatments, we don’t have to always be on edge in that regard.
That gives us the time, mental capacity, and energy to focus on stopping him from getting into too much...[sigh] well, he’s trying to put his fingers in the fan again.
Wish us luck.
Have you had a similar experience? Share your story with us!
Have you participated in clinical or market research before?