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.


  1. This is such a beautiful post. You guys are great parents!!!!

  2. Wow Mary, what a great post. Of course I read your facebook posts, but I never knew how much this affects your daily life. Such an eye-opener.

    I'll look forward to reading more about your 2 handsome boys!

  3. Took me DAYS to get through this, but I finally did. Great job, Mar. Love you and those salty boys.

  4. So heartfelt and real! Keep 'em coming:)

  5. You are inspiring, Mary... and Lou, Michael and Dylan, too! And, you're a great writer.