Sunday, November 28, 2010

As if thanks isn't enough...

So, there's never a dull moment around here.  Why should the holidays be any different?

We are thrilled Thanksgiving Eve, when the nurse comes to remove Michael's PICC.  He barely winces...  I am told most toddlers freak out at the sight of the scissors to remove the stitches, but the process itself of removing the PICC line is fast and painless.  Actually I have even heard it tickles (I know, weird).  It's just that there are 2 or 3 stitches that need to be removed...  with scissors.  Not surprisingly, Michael is upset, but handles himself like a brave kid.  Within seconds, something that has drained on us for so many days is GONE.



You think our world changes?  Of course not.  Energy just redirects.  Series of events to follow the PICC removal...  Nurse leaves.  Take dog potty outside.  Then dog tracks potty on her paws in the house.  All over the house.  Then Michael has an accident.  Same exact time.  No carpet cleaner in the house.  Seriously?!  Prescription needs to picked up at the pharmacy before it closes.  I still have to make the Bacon Cornbread Stuffing for Thanksgiving tomorrow...

This is it.  Between searing tears and belly laughter, I am truly thankful.

Thanksgiving is a blur, always an absurd affair.  I find myself at one point leaving our Uncle's house to go home for a change of clean pants for Michael.  Because Michael has two accidents, not one, because I had been prepared for that...  but two.  One would've been too easy to handle.  Thank you, Cosmos, for throwing 2 messes on Thanksgiving Day.  And so I roll with it.

Now that the holiday weekend is drawing to a close, I look back on the thanks that this weekend has brought, but also on the wonderment.

It's tradition in our family (of my own doing) to lug out our Christmas ornaments and holiday decor the morning after Thanksgiving.  And this year is no exception.  While I swore I wouldn't be one of those suckers at the mall at 4 am.  It turns out I am.  Not for any other reason than I wake up and can't sleep.  At 4:19 am.  So why not shop?

I hop out of bed, throw on my cutest hat with my yoga clothes and scurry out the door to Target to see what kind of deals I can find.  Incredibly, I can't believe the parking lot.  I have to park in the lot of the adjacent grocery store.  As I walk in, folks are already walking out with their treasures and blankets where they had been camped out before the store opened.  I am trying to process this as I walk into the brightly fluorescent-lit store that screams its iconic red bulls-eyes at me.

Chaos.  People grabbing at the electronics boxes.  Mayhem.  Tag-teams rummaging through the DVD displays.  What am I doing here?  My brain throbs.  I head to the toys, grab the few items that I saw in the ad that we had agreed would be perfect for the kids and I head to one last area of the store.

The Christmas trees.  So, every year we have the picture perfect designer tree.  We have all the matching ornaments...  pretty burgundy, rich scarlet, and shimmering gold globes.  Spiced fruit, apples, pears, grapes.  Every year since we've been married, we have chosen a few sentimental ornaments and hung them.  But certainly our tree has had no, uh, personality.

I have a thought that a scrawny little one might become our new special tradition.  I want a cheap one to load all my childhood ornaments on.  To add ornaments each year that the boys make.

A tree of the past.
A tree of the present.
And a tree of hope... a tree of the future.

I turn upon the deserted aisle, since everyone else is in a frenzy at the electronics and the toys.  Or at least that's what I think.  But then it dawns on me.  The real reason no one is here in this department for the deals on the Christmas trees was...  there are none.  All gone.  What a disappointment.

I hang my head and move on.  As I see a sales associate in another department, I ask if they have any trees left, thinking it was a crazy proposal.  She is friendly and offers to check.  And sure enough, to my delight they have one.  As I load it in my cart and head to get in line to pay, everyone keeps asking me where I had found it.  Score!  And in the spirit of the holidays, I hope and would later found out that my comrades asking about the tree also would get one.

The LINE.  It wraps from the back corner of the store to the other back corner, then it snakes its way, zigzagging, back and forth, back and forth, EVERY aisle all the way to the front of the store.  I wait an entire hour just to pay.  It is unreal.  It is a line at an amusement park.

At 6 am sharp, I walk through my door and drop my purse on the counter top with a loud THUD.  Exasperated, look at the damage on the bill.  And think about a cup of coffee.  My husband greets me and we hide the new treasures for the boys.  Within no time the boys are up playing and our day starts.

But herein lies the amazing thing.  Through my gray exhaustion, Michael asks about the Christmas decorations we are going to hang today.  The light in his sparkling eyes dance with excitement.

I put up the small tree I had just purchased.  Michael and I keep calling it our 'special tree'.  And it was worth my ridiculous shopping trip.  Every ornament that I take out he inspects closely with wonder.  His sweet, pink finger tips glide over shiny Santa ornaments, and sparkling snowmen, and delicate angels.  I haven't seen these ornaments in over a decade.  All from my youth and are part of my Christmas memoirs.  And here is my beautiful son, appreciating each ornament, taking it all in.

We continue our decorating, Michael full of questions.  The longest conversation stemming from how Santa comes into our house.  I explain in detail that Santa lands on our roof, and SWOOP!, comes down our chimney into our fireplace.  His eyes are wide.  And focused.  He would later explain it to back to me in detail.

The day passes.  Other than getting up the other Christmas tree and decorations, rather uneventfully.  During CF treatments before bedtime, we watch the animated "Grinch who Stole Christmas".  Michael saying he likes little Cindy Loo Who because he thinks she's cute.  And I explaining that Christmas is about love, not about presents.  The irony still makes me laugh.

As he falls asleep we put on the Charlie Brown Christmas music for him.  You see, he is a Charlie Brown kid.  Part intellectual, part humor, Charlie Brown hits the sweet spot as Michael's ideal entertainment.  So now we have been through The Great Pumpkin, and a Charlie Brown Thanksgiving, it's natural to move on to the next in the holiday specials.

Last year, when he was two years old, he knew every word to "Hark! The Herald Angels Sing" because that is how the Charlie Brown Christmas special ends...  with all the Peanuts singing that song around the pathetic, but miraculously beautiful tree.  We even recorded him singing every complex word in his two-year-old vocals.  It was that unbelievable, we had to record it for all of history.

So this year, at the close of a lovely day, we play the whole Vince Guaraldi Trio music from that TV special in his CD player.  He settles in.  And then...  Two times, Michael calls us into his room on song #10, asking for "repeat".  Since I am not understanding what he is trying to say, I start the entire CD of music over.  Upon the third time, he calls us into his dimly lit room again, it is on song #9...  We find Michael emotional and crying.  Weeping actually.  We realize the song "Hark!  The Herald Angels Sing" is playing and is song #9.  Aha!  He had wanted THAT song on repeat.  He had remembered it from Christmas past.  He is so moved by it, he is crying, but refuses to let us turn it off.  He asks again to have that song played on repeat.  He falls asleep to the joyous, special song that he sang verbatim a year before.

As the night closes, the boys snuggled in their beds, I am content.  Satisfied that I have started a memorable holiday season for Michael.  The next morning, he wakes up with joy across his face and confidently asks, "Did Santa come last night?"  It took some explaining for him to understand that Christmas morning is still weeks away and that we are getting ready for Christmas.  In the meantime, we will get to enjoy the decorations, the lights, the music he loves so much.

Later in the day, Michael goes ice-skating for the first time this weekend and loves it.  He exclaims to his daddy and uncle, "Mommy is going to be so proud of me!"

He's right.  And that doesn't even begin to describe how I feel about this amazing, little boy.

Monday, November 22, 2010

Objects in the Mirror are Closer than they Appear

Look out your rearview mirror.  What do you see?

I am not talking your year books from high school, or your life novel you've been meaning to write...  your rearview mirror.  Your most recent few weeks.  Mine are filled with some surreal images that give me a heavy heart that quickly, inexplicably shifts to gratitude and joy so completely overwhelming.  My heart spontaneously bursts with joy and I crumble weeping.  Michael will look at me and say "Mommy, why are you sad?  Don't be sad."  But what his sweet little heart doesn't yet understand, is that I am crying because I am so HAPPY.

So, as I gaze at the speeding rearview mirror, I see the images shrinking.  Not fading, shrinking.

The hospital room with fluorescent lighting.
The yellow gowns and face masks of the doctors and nurses where only their eyes tell the truths when they are talking.
The red firetrucks on Michael's pillowcase.

The suitcases spilling over with clothes and artifacts from home.
The Styrofoam containers (boo! to the non-ecofriendly packaging) from our take-out.
The balloons, signs, and cards our loved ones sent.
The beautiful Chicago skyline out of our 9West window where so many babies, kids, and teenagers spend time at Children's Memorial Hospital.

The goofy hospital clowns freaking out the kids and adults alike.
The kind nurse to show us how to deliver IVs to Michael in the warm glow of our comfortable family room.
The syringes with the white caps.  The syringes with the blue caps.
The round medicine ball attached to Michael every 8 hours...  for 3 weeks.

They will all but disappear soon when I blink.  Or when I am busy.  Or when I become distracted.  For now they linger, as I count down the IV's left to do until Wedsnesday at 4 pm.  I don't know if I want these images to go away and never come back or if I have lived and learned a lifetime in just weeks.

I have learned how truly blessed I am.  When I hang my head at grace on Thursday, I will be thinking about all those images in my rearview mirror.  And the other truths that will be in my heart.

I know of families and children who will be spending Thanksgiving in the hospital.
I know of a young woman who is in the ICU having just received her gifted new set of lungs to help her take a full, satisfying breath.
I know of families who are gathering for the first Thanksgiving since losing a child.
I know of those who are fighting the sick of heart, sick of mind, and sick of body.

But we are here together.  Each day with a new view in that mirror and each mile further along on our journey.

While I am thankful for all the wonders and love we have experienced in the recent weeks, and all the BIG grown-up things, I am sure for Michael it will be much simpler.  Much sweeter.  He will be most thankful for the PICC being removed on the Eve of Thanksgiving.  And to be able to go back on being, well, a kid.

He has been such a good boy, but he does firmly plant the question every day.  When is my PICC coming out?  I had promised him last week.  When is my cough going to go away?  I have to tell him 'soon', because that's what I am hoping.  And these continue to be the images flying by my mirror these days.  But not the only ones.

Michael to Dylan yesterday morning, "Punch me, punch me right in the face, Dylan."  And Dylan's response in his limited 22-month vocabulary, "FIGHT!"

This told me things had resumed our normalcy.  We will move on to the next mile down on the life highway.  And soon the images will disappear, but we are all the wiser knowing where the road has taken us.

And I am most thankful that my boys are fighters.

Friday, November 19, 2010


You obviously know a little about our story if you found this blog.  But I thought I would polish up many of the details for some of you who don't quite 'get' my Facebook posts or my random comments in conversation.  I hope to give you a peak into our lives with a chronic life-threatening disorder.

Boy meets girl.  Boy and girl fall in love, get married, work a lot, then have a baby.  And work A LOT MORE.  True for all young families welcoming babies...  A LOT OF WORK.  Bottles.  Diapers.  Sleepless nights.  PAUSE.  But right about here, insert this... Boy and girl also find out about about this little thing that lies on Chromosome 7, these two little genes that together create...  well, a little interference.  A genetic glitch, well sort of, that will change their kid's life and their own lives' forever.  What's next for boy and girl...?

Good question.

This is our story.  And there is so much more to it.  Boy and Girl decide to activate.  No, not like Twin Powers Activate...  rather, actively change our life path.  I believe our approach, honesty and perspective has set our course of changing this, well, genetic code.  Two words.


Two silent genes in both of our families landed *SMACK* in our laps.  Actually, our baby's lap.  And would change the course of our family's future.

CF creates digestive problems.
CF creates breathing problems.
CF creates organ problems.
CF creates bodily infections.
CF wreaks havoc on every cell, by INTERFERING with a critical bodily protein from working to properly balance (in the most basic terms) salt and water in the body. 

We believe there are medications that are 'cure-like' that are being tested and researched to correct this "glitch".  However, we are realists.  And while we are involved and seeking a cure today, it simply doesn't change the reality that this blip of genetic data on Chromosome 7 creates a massive amount of work simply to stay healthy.  EVERY.  SINGLE.  DAY.

Improving quality of life.  Sounds like a pretty cliche phrase used all the time.  Maybe you have seen it recently in a direct mail piece you received from a drug store.  Or on the billboard of your new smart phone.  But here it is in our world.  Let me break it down for you...

I dole out roughly 59 pills or medications a day between my two sons.  Try keeping that straight at 7 am when you haven't had a cup of coffee...

And Michael right now is doing ONE HOUR and 45 MINUTES a day of lung therapies a day to keep his lungs clear of lurking dangerous mucus because of a lack natural hydration in his lungs...

And I am playing chef to two highly picky eaters who require a (get this!) HIGH-PROTEIN, HIGH-CALORIE, HIGH-SALT diet...  my trips to the grocery stores are legendary in my quest for dodging the low-fat, lite, low-calorie items that the rest of the world seeks.  Let's just say that I am fervently boycotting this government mission to take sodium out of foods.  I know, totally counter to the rest of society....

And when there is a pause in my day, there really isn't.  My hands are busy washing medical equipment (nebulizers) and sterilizing them for breathing treatments.  Or sanitizing the most used surfaces in my house.  There is always something to tackle...  I could go on.


I am not griping.  Not complaining.  Sure, it's tough.  But I am one very lucky gal.

What?  What is she talking about?

In the 1950's, kids with CF didn't live long enough to attend elementary school.  And we now live a time where individuals with CF are living into their late 30's, and it's believed that babies born today will live even longer.  Because of those scientists.  Because of those parents who wouldn't quit searching for a better life for their kids in the decades previously.  Because of those donors who are helping to fund a cure.  And because of the will of these amazing kids and adults to fight every day and live life to it's fullest.

I have been told by folks who are really "in the know" that we are close.  I have read it in research articles from the scientists in the lab.  "The Man on the Moon" for medicine.  The "Medical Miracle of the 21st Century".  And you know what?

I believe we are.

Thursday, November 18, 2010

I thought the day would never come...

Ok, folks, I have done it.  It's official.  I have started a blog for the whole entire world to peak under the tent at the chaotic circus attraction that is MY LIFE.

Come one, come all.  So it begins...  put your seatbealts on...

Two Salty Boys will keep you laughing, crying and above all keeping the faith.

Keep it real.  Ciao for now.