By Laura Spiegel / Originally written in October 2018

The other day, my five-year-old daughter and I found ourselves doing the pitty-pats, of all things.  She was in day one of a nasty respiratory infection and said that the pressure of the vest was hurting her.  So I fished out the old pastel pink and blue percussors from her memory box and brought them down to the couch.  For the next fifteen minutes, I gently tapped on my daughter’s coughing body as I told her stories of the pitty-pat days gone by. 

I remember my daughter’s first pitty-pat respiratory therapy session as a five-week-old.  I was terrified to tap on her tiny body with too much force, and I had the hardest time attempting to “sit” her in place on my lap.  Five-week-olds do not sit.  They crumple.   And so began the modified position of placing my daughter over my shoulder so that her body would be upright, and I could tap on the appropriate lobe.  Nine times out of ten, this first position in a series of many would put her right to sleep.  I started planning nap times around these sessions, and as the weeks went by, I came to look forward to the opportunity to hold her in my arms as she – and eventually I – gave in to sleep.

It’s hard to believe that it’s been over five years since those early days.  My husband and I like to look back at the whirlwind of that time and marvel at how we made it through with any semblance of sanity.  There are whole pieces of my daughter’s development that I don’t remember well.  I don’t recall where she was for her very first step.  I think I know what her first word was, but only because I had the foresight to write it down.  I can’t remember at what age we first trimmed her hair. 

You know what I do recall?  The first time we did those pitty pats.  The first time she swallowed a spoonful of applesauce and enzymes.  The first attempt to get a ridiculously large dose of antibiotic down her teeny tiny throat.  These moments shaped the first several months of our family’s “new normal” and will be imprinted on my brain forever.

It’s amazing to think about all that’s changed in recent years.  Five years ago, we were prying open enzyme shells and attempting not to spill those rascally beads everywhere as we prepared for each meal.  Now, our daughter can swallow six whole capsules at once.  We try to dissuade her against it, but she is adamant.  Six pills in one mouthful is preferable and apparently quite easy for her.  Five years ago, we were struggling with the pitty pat positioning.  These days, we are thankful for the automation that the vest provides, but we are seriously struggling to get her to sit down and do it twice a day.  Favorite TV shows, puzzles, iPad games, and board games are a thing of the past.  Today’s vest sessions require bribery, mind games, and at times, a glass of wine.  Try not to judge.  These negotiations are not for the faint of heart.

Five years ago this month, our family was preparing for our first “mini quarantine.”  The pulmonologist had told us that for the duration of cold and flu season, it was best not to expose our infant daughter to unnecessary germs.  No errands.  No restaurants.  No church.  No play dates.  No trips to Starbucks.  From October through April of that first year, our daughter didn’t really leave the house except for trips to the hospital to get her preventive RSV shots and to visit her CF team.  Oh, and a trip to her grandparents’ house across town for Christmas.  I remember her first real outing once cold-and-flu season was finally over.  We went to a restaurant where she slept in a booth and ate absolutely nothing.  A heck-of-a low-key return to civilization, but hey, she was free!  And we were out together as a family for the first time in six months!  It was amazing.

These days, the idea of quarantining our girl from the germs of the world is laughable for a couple of reasons.  First, our doctor told us that once she hit age two, continuing to isolate her for half of the year could pose significant social risks.  And second, this girl couldn’t be contained even if we tried!  She is a champion kindergartner who is at this very minute reveling in her make-up work from the days she missed last week.  Call me biased, but I’m pretty sure she was the reason her soccer team only lost by only five or six goals each game instead of twenty.  Defender of the game, baby!  One of these days, she will master the art of the cartwheel, but for now, she enjoys running and leaping through her gymnastics class.  And of course, the pool is no match for her giant strokes and “I dare you to come any closer” splashes.

Our daughter is amazing, and my husband and I have loved seeing her grow into the smart, kind, brave, and strong girl that she is today.  But like all parents, one thing for us hasn’t changed over the years: our intense desire to our girl the very best life possible.  For my husband and me, this has meant shifting our worries and attentions from “How are we going to figure this out?” to “What is the best way we can do this?”  It’s meant focusing less on what we can’t control and working hard to wrap our arms around that which we can.  

My husband and I have joined a handful of other CF parents on our local care team’s family board, and it’s been rewarding to see the fruits of everyone’s efforts coming about.  A few months ago, we were worried about the lack of mask signage in clinic.  Today, we are greeted with a giant easel that reminds all of the kiddos to don their protective gear.  Not long ago, we were frustrated with challenges in the communication process for culture results.  Now, we have a streamlined process to give parents the information they need. 

When our daughter was just a toddler, I chuckled to myself as I built an over-the-top PowerPoint slide deck to track all of her culture results, BMI percentages, CT scan and bronchoscopy findings, and respiratory infections.  I did this partly to reduce the sheer quantity of paperwork that was piling up around here.  And partly just to try to wrap my arms around it all.  But funny thing about that.  Those slides have been a ridiculously valuable resource for conversations with our physician.  My husband and I reference them for everything from the overall state of our daughter’s health – to which drugs work best to address which symptoms.   While the sheer volume of sick days has sometimes been frustrating to see on paper, it’s gotten a lot easier to figure out whether we need to be calling the pediatrician or the pulmonologist; what we need to be telling them; and what prescriptions we need to be asking for.  All because I was itching to throw those pharmacy receipts into the shredder all those years ago!

Don’t get me wrong.  I know that our journey has only just begun here.  I realize that there are a whirlwind of ups and downs to come as our daughter grows older and as the science and medicine associated with managing CF continue to progress.  And I fully realize that I by no means have it all figured out.  I don’t.  At all.  Just ask my husband who thinks I’m a certifiable control freak who could stand to just chill... 

But for now, I do think it’s fun to look back at what we’ve learned over the past five years.  And to imagine where this wild and crazy ride will take us over the next five years, fifty years, and beyond. 

For all you parents of newly diagnosed kiddos out there, be strong.  Be brave.  You’ve got this. 

And cheers to everyone.  With any luck, the best is yet to come.