There’s nothing like the feeling of my toes in the sand, warm sun on my face, the ocean in view and a few days away from home.
As a wife and mother of three, I really appreciate a break from my normal responsibilities of laundry, cooking, chauffeuring, cleaning, and managing my family’s schedules. But as a mom to two children with cystic fibrosis, I am especially grateful for a few days respite from preparing medications, setting up airway clearance therapy, sterilizing nebulizer cups, and refilling pill boxes. While I’m away, I know our kids are being well taken care of by family members and friends who have been trained to the needs of my children and I don’t worry. I am able to fully relax and enjoy a few days off.
This is 6 weeks worth of medications for Carson and Anders.
But then it dawns on me, as I recline in my beach chair. Just because I am away, my boys do not experience a break from their treatments and medications. Not even for a few days. In fact, not ever!
When our oldest was first diagnosed and his medical equipment was shipped to our home, a respiratory therapist was sent to orientate us on how to use the airway clearance system. It was a difficult night for our son as the realization hit him hard. Later that night, he came up to our room and cautiously asked the question, “Will I have to do that Vest thing for the rest of my life?” It was painful to answer “yes”, because, without a cure, cystic fibrosis requires lifelong treatments, therapies, and medications to remain as healthy as possible. There are no days off for those living with CF.
I tried to think of something I do without taking a day off. Sadly, I couldn’t come up with much. I dare to admit that I have gone a day without brushing my teeth, and in spite of my dragon-breath, it wasn’t actually life- threatening, (although I am SURE I repulsed any bystanders.) But even the most dedicated Olympic athletes take time off to give their bodies a break at some point in their career.
May is Cystic Fibrosis awareness month. Let’s consider the hard work that those who live with CF do, day in and day out. They can’t take days off. Their airway clearance therapy goes with them wherever they go, even on vacation. I’m proud of our boys for the hard work they do every single day of their life, just so they can breathe.
