Imagine sitting in a doctor’s office and hearing your child be diagnosed with cystic fibrosis (CF), or another grave illness.
In this paralyzing moment, whatever was consuming your life minutes before suddenly recedes far into the background as you face completely new and seemingly terrifying territory.
Though you may feel as if time has stopped, you must go on.
But what is your next move?
“You are not alone” is a phrase we speak, hear, and read over and over again.
Testimony and statistics prove that others have lived our types of misfortune.
Given that evidence, why is it that so many of us feel as if we are somehow different than all the others who have triumphed over tragedy or are climbing those proverbial mountains?
The seed was first planted ages ago when I was having a conversation with a loved one during a difficult time in her life.
“I know how you feel,” I said, “I’ve been there.”
“You’ve never been where I am!” she shouted back at me. “My life’s a living hell.”
Right then, the “AHA” moment.
“You’re right,” I said. “I’ve never been in the exact same place you’re in, but I’ve been right next door. Everyone’s hell is different, but everyone has their own.”
Just like the journey of Michelle Patrovani, a mother of two young adults with CF.
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. When Nathan, her firstborn, suffered from malady after malady, he was repeatedly misdiagnosed. Luckily, he survived until early adulthood, when he was finally, definitively diagnosed with CF. Younger brother, Caleb, was diagnosed on the heels of what doctors learned from Nathan.
She is also a New York City Department of Education assistant principal, blogger and perpetual learner.
She fights for her sons — her greatest successes — and all touched by CF.
In her blog, Michelle shares an honest voice of a parent, advocate, and caregiver:
“There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.”
In reading Michelle’s blog, I realized that, though others have experienced similar hardships and emotions, we can’t fully understand because we are nothing more than bystanders, albeit neighbors who can somehow relate.
