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.
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 vitamins, Miralax, 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.
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.
