cf letter 2016

2016 Letter

Information Overload

Google it!

TV not working, lawnmower needs a filter, where is my UPS package, the phone number of the Italian restaurant you can never remember, etc.?

Well, type in the question at Google.com and chances are very good you’ll have an answer in half a second.

Ever go to the doctor and ask him to spell something out or write it down? Why? So you can Google it in the parking garage!

If you call up your favorite search engine and begin to search for cystic fibrosis (CF) your results may not give you a warm and fuzzy feeling and you could find yourself learning a little too much!

[Cystic fibrosis is a life-threatening genetic disease that makes the body produce thick, sticky mucus that clogs the lungs and leads to respiratory infections and other problems.]

Our youngest daughter Deirdre (15) is surrounded by technology and can read and see a lot about the disease she lives with and those impacted by it.

She’s curious, wouldn’t you be?

Deirdre knows, and we tell her, as much as she can handle on any given day. Some days are a bit overwhelming especially if she’s been newly diagnosed with another complication of CF.

She’s human and tends to focus on the not-so-great news of CF like a shortened life span, diabetes, feeding tubes, IV lines and extended stays in the hospital. Yikes!

Maureen and I, as well as her sisters Leah (19) and Theresa (17), focus on the good where and when we find it and instill upon her that thousands of people are working on a cure and we have to remain positive even though there have been, and will be, setbacks.

Yet, she’s the one who lives it every day from the pills, multiple inhalers / nebulizers, nasal rinses and sprays and a vibrating vest that performs chest physiotherapy freeing her lungs of the mucus that builds up.

Can you imagine adding 2 hours onto your day just to maintain your health?

A cure for CF is near and we will not stop until then!

Thank you,

Peter & Maureen

Similar Posts

  • 2011 Letter

    There are many celebrations in life and, for the most part, we all celebrate them the same. There are the baptisms, birthdays, first communions, bar/bat mitzvahs, confirmations, weddings, etc. There are many more to fill in the gaps and they range from the impromptu casual get-togethers to the more formal. Birthdays, though, seem to crop…

  • 2005 Letter

    Everyone deserves a pat on the back every now and then… whether it’s for a good report card, a promotion at work, or simply from a proud parent to a son or daughter. But to give someone a pat on the back 4 million times, now that’s a bit much! Well, over the past fours…

  • 2008 Letter

    Anyone who knows me well is aware that I like to hear the bad news first then the good news.  “I’ve got some good news and some bad news.”  Stop – give me the bad news first.  I never really thought of why I prefer that order.  Maybe it’s so I can appreciate the good…

  • 2004 Letter

    “I wish I had cystic fibrosis!”, cried out one of my older daughters at dinner recently. That’s not exactly a question that you’d find in “Parenting 101” so I took a deep breath as I thought of a way out of this one. When asked why she would have such a wish her answer was…

  • 2017 Letter

    Happy Birthday! Happy Birthday! For many of us there comes a time in our lives when we just don’t want to celebrate, or even acknowledge, our birthday each year. The mere fact that it formalizes we are another year older can be downright nauseating. For some it’s in their 40’s or 50’s when they want…