Dancing the Frenetic Routine of a Mom to a Child with CF

When you have a daughter with cystic fibrosis, your mornings become a tightly choreographed routine of treatments and getting ready for work and school. Add a sickness to it, and the routine becomes more complex, the pace more frenetic, and the worries more urgent.

Jan. 6, 2021 | 4 min read
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Rebekah Brooks
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Every morning I rise, groggy and listless, and tiptoe downstairs so as not to awaken my daughter Cadence. I load the Café La Dueña into my Ninja Coffee bar and press start. While awaiting that first cup of coffee, I take my vitamins, drink a tall glass of water, and ponder the morning's litany of tasks. I can't help but hear Daniel Tiger's song in my head: “Clothes on. Eat breakfast. Brush teeth. Put on shoes and off to school.”

If only it were that simple.

With cystic fibrosis, there is so much more to our morning routine. After I finish my coffee, I wake Cadence to start her treatment plan. Still in her pajamas, Cadence inhales two puffs of albuterol through a chamber, we grab the iPad, set up a game, and get settled on the couch. After waiting the prescribed 10 minutes between albuterol and airway clearance, I wrangle my four-year-old into the vest, hook up the hoses, and turn on the machine.

Rebekah-Brooks-Daughter-Airway-Clearance-Rectangle

It is a mad dash during this 20 minutes of airway clearance to finish getting myself ready for a full day of teaching high schoolers, and just as I put the finishing touches on my hair and makeup, I hear my daughter yell, “Vest is done!”

“Okay, honey!” I yell back, and rush down the stairs to pack up the vest, hoses, and machine, then rush into the kitchen to prepare breakfast and even more meds. While the frozen waffle toasts and the sausage links sizzle, I gather vitaminsMiralax, Ursodiol, enzymes, Orkambi®, orange juice, applesauce, a cup, a spoon, and a syringe. As the waffle pops up from the toaster, I grab the butter and lather it on thick. I take the sausage from the pan and arrange it on a plate with the waffle. Then I call Cadence into the kitchen to take her meds and eat. After breakfast, we complete the rest of the Daniel Tiger song by getting dressed, brushing teeth, gathering our belongings, and heading off to school.

This is the rhythm of our mornings. It is hectic -- almost frenetic-- but it is also expected and familiar. We have found a rhythm that works for us, and it is this rhythm that I remind myself of when life gets even more frantic.

There are mornings where Cadence wakes up congested, disrupting our usual rhythm by requiring the addition of hypertonic saline through her nebulizer. This added step only intensifies my underlying current of frenzied worry. My pace quickens as we hurry to complete nebs, and my mind races through what this new round of illness will bring. If we are lucky, it is only a cold, and we will continue with our new rhythm for the next few weeks until the congestion clears. I dare not imagine if this could be something worse that could completely stop time. When she is sick, it is so easy to let the anxiety take over and fret over how we will fit everything in, for our morning rhythm carries over into our evening as we start the albuterol, saline, and vest all over again.

Rebekah-Brooks-Family-Featured-Rectangle

Then there are also days when Cadence has gastrointestinal issues -- we once landed a weekend stay at the hospital to clear her out. There was certainly nothing rhythmic about that.

But through these difficult times, I find myself being mindful of the moment and remember that this, too, shall pass. I remind myself that we will return to our own rhythm again, that we will dance to our own cadence.

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Rebekah lives with her daughter, Cadence, just north of Boston where she teaches high school English. She completed her undergraduate degree in English and received her master's degree in teaching at the University of South Carolina. Since her daughter's diagnosis, Rebekah has also participated in fundraising for Great Strides and hopes to one day publish a memoir to help spread awareness. When she can find the time, Rebekah loves to go for runs, dance with her daughter, and curl up on the couch to enjoy a cup of coffee and a good book. You can follow her story on Facebook.

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