It’s December 23rd, and I’m watching the Christmas lights twinkle on the tree.  We were going to get a real one until we remembered last year’s adventure, what with the tree nearly careening off the car into oncoming traffic four or fifteen times.  No, this year, we went with the old standby.  An artificial beauty that was efficiently pre-lit until the cat scaled the tree and gnawed every cord.  Still she stands, elegantly hoisting the dainty pre-kids ceramic ornaments just out of grabbing distance.  Her lower extremities hang low with hand-made treasures from our eight-year-old son and five-year-old daughter.  

Each year, her bottom sags more.  Now, why does that sound familiar?

This might be the point where you pause.  “Did she forget who she’s blogging for?” you might wonder.  “What does this have to do with cystic fibrosis?  Well, sit tight for a bit, and I’ll tell you.  [Brief pause for a quick nip of red and a stoking of the Amazon Prime Video artificial fire].

Today was one of the most heartwarming days I’ve had in months.  Our family went to church, where I got to hear my daughter (who has CF) intently belt out Christmas carols.  Or voice a hearty La-La-La whenever the words eluded her.  Which was often.  After church, I had lunch with a wonderful group of girlfriends who reminded me through their own stories that all of us often deal with less-than-ideal circumstances in life.  Health woes.  Grinch-like ex-spouses.  Office politics.  Hell, politics in general.  We all have our struggles, and it’s somewhat selfishly reassuring to remind myself that I’m not the only one who feels the way I do at times.  Tired.  Worried.  Somewhat concerned about my inability to relax.  Apparently, a clenched jaw is not overly Namaste…

But then, a family friend who cared for my kids before I peaced out of corporate America came to visit.  She and my daughter baked lopsided sugar cookies and made ornaments.  We played Christmas carols until my daughter insisted that they were too loud (they were not) and that they were hurting her ears.  This is despite the fact that she was donning sequined ear muffs and has zero sensory issues that would even remotely legitimize her claims of excess volume.  I just think she wasn’t down with Karen Carpenter.  So, we reluctantly abandoned the piano, ate some left-over pizza, and played a game called Purple Cat.  Have you heard of this?  It’s quite simple.  You draw purple whiskers on your face and run laps around the house while pretending to be a purple cat.  Or rather, the young ones run laps, the pushing-forties speed-walk like the sciatica-sporting rock stars we are, and the guests referee whilst silently questioning your sanity. 

At some point in the evening, we attempted to do respiratory therapy.  In our house, the mask and vest routine is a bit like Jekyll and Hyde.  Sometimes, it’s a breeze with no pushback or pauses until the session is done. Other times, I would give myself better odds of successfully negotiating world peace.  Tonight was the latter.  We got exactly four minutes in before the vest was paused and the mask removed.  Hi-Ho Cherry-O was a bust.  The current “it” movie on Netflix – a comforting story about a summer camp overrun by zombies – failed to get the job done.  

Tickles were thwarted.  Bribes scoffed.  Threats of canceling the tradition of opening one gift at noon on Christmas Eve were ineffective.  Yes.  That’s right.  I negotiated, bribed, and threatened all in one vest session.  The three things I’ve been told one should try to avoid when it comes to a child’s CF care. 

But then, by some Christmas miracle, we made it through.  The mask and vest were done.  I watched my daughter read books and sample the fruits of her culinary labors.  She put on her Elsa jammies and snuggled into bed for twenty seconds before popping back up and jumping on her bed until I admittedly reinstated all said threats.  We gridlocked for a moment until she asked me to rock her.  I held her warm body in my arms and sang her Silent Night.  And I told her the three things that I tell her every night before she goes to sleep.  “I love you with all my heart.  I’m so proud of you.  And I’m so glad God gave you to me.”   

You see, I get to do these things.  I get to be the mom of a little girl who needs a little more help when it comes to staying healthy. Of a girl who has had seven different respiratory exacerbations this year but has kicked every one of them with determination and grit.  A girl who is so, so very brave when she gets throat swabs stuck down her throat.  When she has eight vials of blood taken from her tiny veins.  When she shows up at Kindergarten so excited to learn, even though she’s nearly always late from cramming in a respiratory session before she goes.

  A girl who asked earlier this month if she could add “no more mask and vest” to her Christmas list for Santa. 

It’s going to happen one day.  I really, truly believe it.  With the rigor of science, the commitment of the medical community, and the wings of the angels that I do believe watch over my girl, she may not have to do all of this…  But until then, I think I am one lucky mama.  I get to love and protect and coach and comfort and push and snuggle and most importantly, learn from this little girl.  At just five years old, she is already one of the strongest and biggest hearted people I know.  And I get to love her.

The holidays can be a complicated time.  No matter what Norman Rockwell wanted us to believe, this time of year isn’t all sugar and spice.  Sometimes, we are lonely.  Sometimes, we hurt or feel overwhelmed.  I know that amidst my gripes and groans of the season, I am so lucky to have family and friends to love and treasure.  And my daughter is one of the best gifts that I ever, ever could have received.

So, cheers to you and yours this holiday season.   May your TV yule log burn brightly.  May you find comfort in gifts both big and small.  And may your tree withstand the dammit-there-she-goes-again climbing cat…

 

   Help Others Live STRONGER and LONGER- 

         

   

 

 

 

Laura Spiegel is the mother of two wonderful kiddos, one who has CF. She lives in Indianapolis and enjoys a good book, a great meal, and nightly dancing in her kitchen. Laura is also a member of the CFLF Board of Directors. She can be contacted at lauraspiegel7@gmail.com

 

 

 

 

 

***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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