By Laura Spiegel

Does anyone remember that ridiculously catchy song from the summer of 1997 by the one-hit-wonder Chumbawamba?

“I get knocked down, but I get up again.  You’re never gonna keep me down…”

Last night, as I was climbing into bed, that song appeared in my head out of nowhere.   And I thought to myself, “When did my life start feeling like a Chumbawamba song?”  I should clarify.  Not the parts of the song that talk about whiskey and vodka, but the above refrain that champions resilience after being knocked down.

Let’s rewind a bit to November 21.  According to the all-knowing Facebook, on that date, I posted a very cocky, ridiculously fate-tempting status update.  I said, and I quote, “Dear Winter…Bring it.”  Alongside it, I shared two cute shots of my kiddos frolicking around in the first snow of the season.  Precious, right?

Oh, poor, fate-tempting Laura.  Mother Nature did indeed “bring it” with a force that has knocked my family right on our previously-pompous keisters.  Since that posting in November, here are some fun highlights of what has transpired health-wise in the Spiegel household:

-          While visiting family for Thanksgiving, my daughter fell down the stairs and hit her face on a wood floor.  That beautiful smile you admired above is now missing a tooth.  And our first trip to the ER occurred in the heart of cold and flu season, not for CF-related causes, but for a 45-degree-angled tooth.  Seriously. 

-          My husband and I both caught respiratory infections and later, the flu -  like, the real bona fide flu --- for the first time in forever.   If someone had said, “Laura, I will give you six million dollars to get out of bed and go get the mail,” I couldn’t have done it.  Luckily, we have family in town who came to care for the kids.  Otherwise, my house could have been like that scene from Home Alone where Kevin first realizes he’s alone and can do whatever he pleases.  You know the one.  Reddi-wip, Cheetos, and violent movies galore…

 -          My daughter had her first respiratory infection that just wouldn’t go away.  In my last blog, I wrote about the “one-two punch” of antibiotics that always helped her kick any crud to the curb.  Not this time!  Twice, we had our bags packed to be admitted to the hospital, but at the eleventh hour - after a chest x-ray, a bronchoscopy, seemingly gallons of Bactrim, and oodles of prayers- she kicked it.  Yay!  But seriously, I’ll not forget the literal frenzy I was in as I flew around our house to pack her bags for her first in-patient stay.  There were 9 bags in total.  It didn’t occur to me to get a giant suitcase for everything.  No, I had duffel bags, pool bags, etc. all stuffed with every toy and book imaginable that she might need for her stay.  I even packed her full bedding, because if she was going to sleep in the hospital for 2 weeks, she was going to do so enshrouded in purple psychedelic flowers, darn it.

 -          Just when our daughter started to perk up, our son brought home the croup.  Because, hey, why not?

 -          My daughter again landed herself in the ER with a fever of 105 just this past week.  It was the darndest thing.  One day, she was perfectly fine.  The next day, a fever of 105 and vomiting.  She is now fully recovered.  It seems it was just a weird, never-to-be-identified virus.  The good news (in addition to her recovery!) is that we were prepared this time.  My husband asked the hospital staff to put a “respiratory high risk” sign outside her door and requested that everyone entering our room wear gowns.  It’s hard to say if they were planning to do this anyway, but something tells me “No,” so I’m glad we were proactive.  The staff was very accommodating and didn’t bat an eyelash as I wiped down the hospital bed with Lysol wipes and routinely doused my daughter with Purell during our 4-hour stay.  Ha!  Take that, icky hospital germs!

Where am I going with all this?  I promise, I do actually have a point.  Perhaps a couple of them. 

First, I will never again tempt Winter in a smug Facebook posting.  Mother Nature is apparently active on social media and eager to reply “Challenge Accepted” when confronted.

Second, the exhaustion and fear I’ve felt this winter have made me realize that it’s time to trade in the “Worrier” title for that of “Warrior”.  There are so many things about CF that we just can’t control.  My daughter does her vest therapy religiously, has never missed an enzyme, and is still young enough that we can usually limit her exposure to people who are sick.  Even so, all of the above still happened.   

But with one simple letter change, I can go from a person who is constantly concerned about what’s going to hit next, to one who is cautious but also in control.  A CF Warrior, if you will.  My former boss always used to say, “Control what you can control.  Don’t worry about the rest.”  This week, I tried to apply that advice to my daughter’s CF, and I found that it’s actually brought me some much-needed peace of mind. 

Here are a few simple things I did this week to try to squash my worries and get some control back.

1.      I decided that this is the week that I should (finally) capture in one place all of my daughter’s heights and weights and trend them out.  Our CF clinic just implemented a new EMR, so we’ve not historically had a nice print-out of her progress available to us.   No worries!  I scoured through old notes, plotted everything into a table, and voila!  I am now equipped to track her growth progress and have informed discussions with our dietician instead of simply worrying about whether my daughter’s little tummy is flatter than it should be.   

2.      Next, I tapped into my local CF Parents Community Facebook page to crowd-source some fresh ideas for high-cal foods.  We’ve gotten into a bit of a rut lately, and I wanted to see what creative things worked for my peers.  It was amazing.  I threw out the post, and within minutes, I had literally dozens of ideas for new meals and snacks to try.  Don’t laugh, but it never before occurred to me to add cream to everything.  Or to cook with coconut oil instead of olive oil.  I was on fire on my last Target run with all sorts of new things to try.  Did you know that they actually sell cubes of lard at Target?  Seriously, right next to the Crisco were perfectly stacked rectangles with LARD in all caps.  Don’t worry – I may have wavered, but I didn’t buy it.  We’ll save that for another trip. 

 3.      Finally, while cruising through our CF clinic’s new Patient Portal, I came across a recommendation for what normal breaths per minute should be.  Many times this winter, I’ve been asked whether my daughter is breathing more rapidly than normal.  And I’ve always struggled to answer this question.  “Yes, I think so, but she was just jumping off the couch earlier / dancing to Party Rock Anthem / running away from a make-believe purple cat (pick one of the above on any given day), so perhaps it’s related to that?”   Or “Yes, I think so, and she’s just sitting here reading Snow White for the millionth time, so that’s not good, right?” But I never had a baseline for what “normal” is, which made me constantly wonder (translation: worry) if I was understating or overstating her status.  In the Patient Portal, I found out that for her age, a resting rate should be 20-30 breaths per minute.  So next time I’m worried (provided she’s not just been chased by a purple cat), I can simply count her breaths and then act.

The above ideas aren’t rocket science, but they’ve worked for me.  And I’m hopeful that as the months and years go on, this kind of approach to controlling what I can control---- whether it’s doing some quick online research; tapping into the online CF community; or simply getting a grip on our clinic visit notes --- can keep me (and someday, my daughter) out of the worry spiral and firmly chanting the warrior cry of Chumbawamba.

 “I get knocked down, but I get up again. You’re never gonna keep me down!” 

Because hey, someone has to keep their music alive. 

P.S.  Is it spring yet?