Life has a certain ebb and flow when you live with a chronic illness. Good health is something not taken for granted. For most fighting a chronic illness, healthiness is something we are always acutely aware of. When we’re healthy we relish how easy it is to breathe deep to laugh, the luxury of simply taking the stairs or how playing outside today won’t cause hurt tomorrow. Under this magnification of appreciation you also become gravely aware of the first sign that you’re slipping. You might notice the extra pause you take when lugging in groceries, the slight resistance of the joints in your hands when you go to make your morning coffee or the weight of your chest when having an impromptu dance party.
It’s in these small signs that we know our health is fleeting. Where we were once happily gazing out into the future on our hill of health, our bodies have sent us small warnings that we’re slipping. We’re no longer standing on top of the hill but sliding downwards. We can use these signs to fortify our defenses & up our effort of putting our health first so we can fight to get back on top of our hill.
Yet sometimes, that’s just not what happens. Sometimes, despite all your effort, despite how hard you push, you keep sliding backwards. The peak of your hill gets smaller as you get further and further away. You grapple at anything on your way down; you dig your heels in, your hands snatching at roots, finger nails digging into the dirt and praying you can just hold on. But when gravity gets ahold of you halfway down that hill, you know you’re out of luck and out of options. There is just no way you’re making it back to the top of that hill without someone to help you get there.
That’s what living with CF is like: a constant battle to stay atop your favorite hill. The hill where, at its peak, your baby girl sits patiently waiting for you to get back.
Emerson’s young now, so she doesn’t realize the subtleties of my illness. For now she thinks that all Mommies need nebulizers. I keep a jar of enzymes on the counter so I can reach in and grab a few before I eat… to her that jar is normal, my pills, are normal. The bright blue vest I strap to my chest to shake for half hour increments? Normal. Maybe she thinks that all mothers use these things. Maybe she thinks that one day she’ll need these things too.
Yes, Emerson is young now and she doesn’t understand why some days I can play, and others I can’t. She doesn’t understand the aggravation of not being able to meet her demands, because my body already had too many. She can’t comprehend that I sometimes have to put myself first, out of love for her. And when she cries because she doesn’t want me to do my vest any longer, when she signs “all done” as I bring out my morning nebulizer, or when I simply don’t have the energy to go outside and she cries at the door… she doesn’t realize that it’s heartbreaking for me. That I too, don’t want to stay inside to do my meds, but I must and so I do.
Balancing motherhood with my disease is hard- tremendously, terrifyingly, and staggeringly hard. Maybe one day Emmie will understand, that we’re all just navigating life the best we can with what we were given. Maybe one day she’ll look back and recognize all the sacrifices I make as a mother with CF so that I could have one more day to hold her, one more day to tell her I love her, one more day of being her mother. For now, that’s all I can hope, and it’s that hope that keeps me fighting day after day to get back to the top of that hill.