Finding Peace With My Sons’ Diagnoses

Before we knew what to call it, cystic fibrosis had inflicted damage on the lives of my sons and me and left fear in its wake. Three years after my sons' late diagnoses, knowledge has calmed the storm and provided a measure of peace.

Oct. 5, 2017 | 4 min read
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Michelle Patrovani
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When cystic fibrosis first hit my sons and me, we instantly became prisoners of fear.

I had known fear in life but fear was always something to be conquered, to overcome. With the CF diagnosis, we were informed there was no cure. We had no way of defeating, conquering, overcoming.

Or so I thought …

As Hurricane Irma barreled through the Caribbean and careened for us here in Florida -- intent on crashing into us -- I had peace. That peace faltered only when I thought about trying to do things that were impossible to do in the time period before Irma hit.

CF officially barreled into my family in April 2014, and -- like a hurricane -- it was powerful, destructive, and frightening. Before 2014 -- before my sons were diagnosed -- CF had been robbing them daily of oxygen, nutrition, and life. It had also been wiping out my energy. Unlike a hurricane, which passes by relatively quickly, CF had been striking us continuously and stealing our peace for almost 19 years.

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Today though, I have found peace -- a slightly shakable one -- but peace, nevertheless.

Finding peace with CF was not easy. Other elements of life buffeted us: auto accidents, job dissatisfaction, making ends meet, fighting with insurance companies. Funny, none of these stop when CF thunders and attacks.

Grief was a part of this journey, too. I don't remember anger; just the shock and intense sadness for my sons. I also remember a dear friend saying, "Michelle, I've seen you cry more this year than I have in the past five years combined." That was February 2015.

In three years of knowing CF, it has become a valued teacher. It has taught me to find deeper meaning in every moment, how to conserve energy and unplug, how to modify how I conduct business and manage relationships, and how to let go much more quickly. It has given me freedom to relinquish a polluted city, a “promised” retirement that might never come, and many suffocations of the present.

CF has helped me choose warmer, salty, lung-loving waters, and blue, vitamin-D-filled skies. CF has reminded me that a little is enough, that less is more, and that I don't have to move at highway or hurricane-wind speeds to get things done.

CF continues to teach me to control what is in my power to control, be diligent in doing so, and everything else, let go.

Two years ago, I wrote that life with a diagnosis and without a diagnosis were the same in that patients and families still dance with hope and fear every day. I was wrong. Having a diagnosis is fearful at first, but so much better than fighting an invisible foe. What would happen if we had a surprise assault from Irma?

When my sons were first diagnosed with CF, it was a surprise assault. CF is a perpetually raging storm; but the CF diagnosis means knowledge and skills. It equates to the ability to be proactive and decisive with small and big things, alike. It means not wasting time trying to figure out who or what the enemy is. Instead, it means getting to “know” CF, intimately, then strategically planning and implementing an attack plan -- and actually living. A CF diagnosis means being able to train our children in the same way, thereby giving them power and hopefully, peace.

Gone are the 2014 days of constant tears and fear. Today, we are still learning, but we are stronger and have peace. And as Irma stormed through, I realized that we have also been learning how to go sky diving, wind surfing, and jet-plane soaring on CF's winds.

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So, three-years post diagnosis, I am a calmer CF opponent. Now, when I speak about CF, I do so without tears, without sorrow, and without the “whys” … with only a slightly shakable and beautifully strong peace.

So, let CF come. My peace is stronger, well-worn, battle-tested, and enduring. And, the sun will come out tomorrow.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Born and raised in Trinidad and Tobago, Michelle, at age 20, emigrated to the U.S. She is a single mother to Nathan and Caleb who were diagnosed with CF in their teens. She is also a recent Florida transplant, Broward County Public School Teacher, blogger, and perpetual learner. She fights for her sons -- her greatest successes -- and all touched by CF. She believes that the perceived limitations of CF are never to be accepted. Follow @AbundantBreath on Twitter and connect with Michelle Ann Patrovani on LinkedIn.

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