A Thank You To All the Moms With Adult CF Children
To All the Moms with Adult CF Children:
Present from the very beginning, this is a thank you to all the moms with adult CF children. The ones who faced CF before mutations were named with letters and numbers long, long ago. You pounded our backs every morning and night to clear infected lungs. Your "claps" were rhythmic and steady--just like you.
Once upon a time, there were no Vests or highly effective treatments. There was only you, your hands, and a very large nebulizer machine. With every improvement in quality of life, you shed tears of gratitude and your hearts filled with the tiniest bit of hope. Moreover, with each passing milestone, you celebrated with us and for us. This is especially for the moms who wondered if their children would ever grow old at all. You deserve the biggest "thank you."
A new point of view
It wasn’t until I became a mother myself that I realized how immobilized with fear you must have felt facing a disease like that. A disease so devastating and consuming, but with so little awareness your family and neighbors never even heard of it. I imagine that was difficult and isolating to be unlike the other moms.
How many times did you have to explain to a teacher, fellow parent, or neighbor why we were different? Did you get tired instructing others how to give enzymes before meals? Did it make you sad to miss work caring for your sick child? Were your thoughts were clouded with excessive worry and attention to our care?
I try to put myself in your shoes, and I break down thinking about my own precious baby. The thought is even too painful. I don't know how you did it; but I know you did it because you loved us. Thank you for putting us first, always.
Together we learned the quickest routes through hospital hallways and the best spots for treats within the grounds. The hospital was comfortable--and even fun--when you were around during those long admissions. You knew how to be flexible and get stuff done. And when it didn't get done, you did it yourselves. The locked linen closest to every hospital floor is no match for a CF mom. You are the kindest and scariest parents on inpatient floors.
When it was time, you released control and taught us how to advocate and communicate our needs clearly and concisely. I'm sure it was hard to let go and let us make many mistakes under your watchful eye. I'm sure letting go of our care was your greatest joy and fear wrapped up all in one. It meant we were old enough to handle it--something you hoped for all along--but young enough to lose sight of its priority.
Intermittently, we forced you to plea with your snotty teenagers out of desperation to be compliant with their treatments. I’m sorry we put you in that position after all your devotion to our care. What a slap in your face that must have been.
We are older now, and we see how important those lessons were to our independence, growth, and eventual adulthood. Thank you for stepping aside but staying near.
Always a CF mom
Even though we are older now, possibly married or living on our own, sterilizing our own nebulizer cups (hopefully), and fighting our own insurance battles, we hope you know how much we appreciate your continuous fight. The many phone calls where you simply ask, “How are you doing?” are still appreciated. And the concerned gawks towards our weight are less annoying when you're an adult and realize they are completely the product of love. Thank you for always being a CF mom.
So much has changed in the past couple decades, CF isn't the same type of beast you faced so long ago. There's more hope than ever, and it's wonderful to finally be experiencing the tide shifting. Your once little baby--labeled with a scary disease and an even scarier prognosis--is now an adult, and that’s in part because we had moms like you.
Happy Mother's Day to all the mothers in CF community! We couldn't have done it without you!
Have you (or a loved one) been experiencing any negative side effects from Trikafta?