Wednesday, February 29, 2012

21,000

21,000 times a day.

You do this 21,000 times every day and are generally unaware of it.  But for some, it isn't so easy.

You BREATHE.

Let me explain...  next time you grab for your Big Gulp, take a moment to pull the straw out and try breathing through it.  Now breathe through it for 30 seconds.  Next try breathing through it all day.  Then consider what it's like to do this -- every day.  Imagine 21,000 breaths like that.

If you frequent Two Salty Boys, you know that both of our sons have Cystic Fibrosis.  CF is genetic disorder where two little genes create a LOT of problems.

Our boys spend a couple hours, yes you read that right, A COUPLE HOURS every day doing breathing treatments with special inhaled medications.  They also do chest physiotherapy to clear their lungs of sticky mucus that is a magnet for dangerous bacteria and life-threatening lung infections.  These lung infections are the culprit of progressive lung damage and lung decline.  IV antibiotics are a given in the CF world.  Not a matter of "if" they will have IV's, but "when".  Treatments are labor-intensive and time-consuming.  And they are 2 or 3x...  EVERY DAY.  That's approximately 2 months of their lives each year working hard to breathe.




They also take a regimen spanning 60 pills a day and countless medications to help them eat, digest food properly, and grow normally.  Every time they eat or even simply drink a glass of milk, they are forced to take a handful of pills.  Belly aches are a state of normal for them.  Oh, and they need 150-200% more calories just to maintain weight and grow like other kids.



The hardest part for me is knowing that the clock is ticking...  And every breath is precious.  If you have made it this far, you probably aren't taking your 21,000 breaths for granted now.

My plea is a challenge to YOU, Two Salty Boys fans.

$21.

A buck for every 1,000 breaths you will breathe today to help my boys breathe easier.
And the catch is that you then SHARE this with all your friends with the same request -- $21.

That's 14 big gulps, if you're counting.
Or 4 coffees at a gourmet coffee shop.
Or 2 cocktails out on the town.

It's simple.
$21 and SHARE this with all your friends over email, Facebook, and Twitter
and ask them to donate $21.
And ask them to ask all their friends to donate.  Just $21.
 Pay it forward again.  $21.
And so on.

Donate $21 TODAY at...

And pay it forward to help someone else BREATHE.

Wouldn't it be a miracle if we could get 21,000 people to donate $21?   Let's see just how big we can take this.

"Life is not measured by the number of breaths we take, but the moments that take our breath away."  ~Anonymous

Monday, February 13, 2012

A Christmas Classic.

The only way I can sum up a wonderful Christmas is defined by the best Christmas movie in history...  "A Christmas Story".  It oozes warm nostalgia and it's brilliant story telling by Jean Shepard never gets old.  FX has it right when it plays the classic for 24 straight hours on Christmas Eve and Christmas Day.  It's so relatable.  His story-telling brings to life the wonder that pulses through children on that special morning.  It was also my dad's favorite Christmas movie.  I remember he loved the film.  It is with his memory and his humor that I watch it each season.  For me, the movie draws me closer into the depth of the holiday each year.

Christmas around our house is delightful and it is a quiet holiday for us, other than the recurring battle for CF treatments with Dylan.  He is a bull and trying to get this child to do anything against his will, is well, a MAJOR task.  Most times it's about gently steering and redirecting Dylan, but we have always towed the line in our house that we are doing treatments...  on birthdays, on holidays, on every day.  They are part of our routine and we have decided to teach our boys that we do them.  PERIOD.  We have had to on ocassion teach them that we will do them nice or we will do them mad if we have to (forceably), but we will do them.  It is for their health and well being.  The key is consistency and firmness.  And with Dylan sometimes it takes a mack truck to make this point.

The days leading up to Christmas he fights us and argues with his menacing growl that he is not doing his "vest and mask".  His ferociousness doesn't quite mask his two year old lisp that is so completely adorable.  We battle through on Christmas Eve night with treatments, and in Dylan's sleepless exhaustion, he passes out during the rhythmic hum of the machines.  Some days parenting is tough and some are easier.  We find the blessings in the Christmas season that although defiant, the boys do their treatments and other than the season's expected sniffles...  they are healthy.

Michael is ecstatic that it is Christmas Eve when all the lights twinkle a little brighter.  He hurridly keeps asking where Santa Clause is and how much longer.  Thanks to modern technology, an iPhone app can geo-locate the fat elf with a bazillion toys.  So, we keep Michael apprised of Santa's ETA.  The Christmas season has thrown me a few curve balls trying to get shopping done, gifts wrapped, and surprises hidden.  There is the time when Michael strolls down the stairs at midnight one night when I am wrapping gifts.  Coming downstairs after falling asleep is very uncharacteristic for him, so I am shocked to see him with his fleece jammie bottoms and white undershirt standing there rubbing his eyes.  His little pink toes are poking out from the bottoms of his pjs.  He looks at me standing at the kitchen table in brash lighting.  I am wrapping his gifts.  His SANTA gifts.  Luckily, I can quickly whisk him away in his fog and he doesn't remember a thing the next morning.

And then there is the time that Dylan calls me out.  YES.  Calls me out.  It is a night when Michael, Dylan and I were reading books at bedtime.  It is a little out of the season's ordinary pre-bedtime audio reading of "The Polar Express".  I am convinced this gift set from a neighbor years ago is not only super special each Christmas season, but is the best gift for exhausted parents.  It is a set that includes the book, a CD narration and the silver bell.  Michael, since before he was two years old, would bolt out of the bathroom after his bath (often still wet and completely naked) at bedtime during Christmas and tee up the CD and clutch the bell.  We'd have to squeeze the jammies on over his tiny balled fist bursting with the bell.  Usually with me in a heap of weariness on the floor at the bedtime "book" hour.  He loves the CD version.  Frankly, so do I.

But on this particular night, we have stacked four books high and read each of them together.  And in the pile, there are humorously four different versions of "T'was the Night Before Christmas", but whatever.  By the end of December Michael could narrate the beloved verses by memory.  Somewhere between "not a creature was stirring" and "the prancing and pawing of each little hoove", and during a break when Dylan isn't jumping on Michael's full size bed, he looks at me and laughs.  I wonder why my adorable two-year-old has paused and started laughing.  Michael and I look at each other and shrug our shoulders.  We are clearly not in on Dylan's little thoughtful joke.

Dylan blurts out, "Mommy, are you Thanta Cwauth?"  DID HE JUST ASK ME THAT?  Did this sweet little boy ask if I was Santa Clause?  Awww, c'mon!  "What did you just say?" I asked him in astonishment.  Michael is snickering and then quiets with keen interest to listen.

Dylan says again very clearly, "Are you Thanta Cwauth?"  His eyes glimmered.  And he belly laughs heartily.  "That would be funny!  baaaahahaha" he laughs in delight.  I laugh too and sarcastically reply, "Do I look like I have a big fat belly?"  (well, maybe)  "And do I look like an old man with a long white beard?"  (not really)  "And do you think that I have a million elves doing things for me every day?"  (gee, I wish).  "Of course, I'm not Santa, you silly goose!"  Now we are all laughing at such an absurd throught.

That was close.  My cover was almost blown.

We make it all the way to Christmas morning without any more "incidents".  And it is pure joy for Michael.  I race down the stairs and grab our camera to capture his priceless expression.  He pauses on the steps and views the loot in the family room.  He slowly makes his way to the bottom.  He puts his hands on his cheeks in amazement.  "This is unbeweevaboe.  I can't beweeve it," he mutters over and over.  (He has trouble with his "L's").

Santa.  Had.  Visited.



And there were the authentic North Pole Gift Tags to prove it.  He scans the packages.  I have him start going through his stocking which has now become tradition (my thinking is enjoying the small things in life, the big things will come in good time.)  He is thrilled at every bit of candy and every trinket in his stocking.



Dylan on the other hand couldn't really be bothered.  He is just psyched about the Lifesaver Gummies that were left in his stocking.  I guess with this kid it's all about SIMPLICITY.  He partakes in the festivities and enjoys the candy.  For Dylan, candy is the treasure of the day.  By afternoon three-quarter of his gifts still sit wrapped on the sofa, begging to be opened.  Michael would later do the honors.  Michael never passes on opening a present.

We have a quiet Christmas where we build LEGO ships in between salivating over our delicious roast tenderloin courtesy of an awesome recipe only Emeril Lagasse could dream up.  We wear jammies most of the day, except when the boys don their Chicago Bears jerseys for the Christmas day game.  Like true die-hard fans.  Ahh, it's Christmas.

I relish each moment, even during our exhaustive CF treatments that day.  I realize that my sweet boys enjoy the wonders of the holidays and they are playful and excited even during the draining, routine of the CF breathing treatments.  They take it all in.

As I assess the day as I sit on the sofa and to enjoy on of the final runs of "A Christmas Story", I notice a moment not to be forgotten.  I am about as overtaken with joy as Michael was this morning in the moment of seeing his presents.  My heart swells.



My two little boys are standing in a dead stare watching the TV.  Amongst the lights and candy, shiny trinkets and busy toys, they are transfixed on glowing screen.  In this moment I realize that Jean Shepard's heart-warming narrative about a boy and a Beebe gun has captured my boys' hearts and wonder too.  I stop.  And I swoon.

Somewhere nearby, I also just know that my father is beaming and laughing alongside of them as they watch "the boy with the glasses and gun" as Michael would always refer to Ralphie.  I snicker and wish my dad a Merry Christmas knowing this was one of our gifts to him.