When I think about what it means to be a caregiver, several qualities come to mind -- such as the ability to love and support someone else emotionally and perhaps financially, to provide food and shelter. As we grow older, we go through phases where we believe that we don't need a caregiver at all. But ultimately we become wise enough to understand that we all need to be cared for, no matter what the capacity.
Starting at 6 months of age, I began my daily journey battling my chronic illness, cystic fibrosis. And now, at 28, my heart is heavy because one of my nearest and dearest caregivers passed away unexpectedly … my father.
Bob Gaynor, a man who was not just my father and my dear friend, but in many ways my soul mate, left us far before anyone who knew him was ready to say goodbye. Although a personal tragedy, I believe that my father departed gracefully, peacefully and, most importantly, full of hope and happiness. My connection to my father, and in turn a great deal of what defined him, was my CF and all that came with this relentless fight for us as a family. When you begin to understand the kind of relationship that we had, it is clear that his commitment to me was profound. My father gave himself fully to my fight every single day of his life.
Growing up, I had a milder case of CF -- mainly dealing with issues of thriving more than anything else. When I went away to college, I began to experience more severe respiratory problems and was admitted into the hospital for the first time. After college, I moved to New York City where I began an internship that quickly (and luckily) turned into a full-time job and career path. But I struggled, to say the least. What it means to have a progressive disease, such as CF, began to ring all too clear for me. It became impossible for me to work, take care of myself and carry on with my everyday life in a "normal" fashion.
The past two years of my life have been the hardest that have come to pass, not just for me, but for my entire family. Fighting an uphill battle of constant infections left me unable to take care of myself, forcing me to leave my job that I so adored and move back in with my parents. In May 2015, my father made the same decision that he had made when I was first diagnosed; he chose family over work. His tenacious determination to give me the care that was needed to get me back on my feet was inspired and unabated.
My journey with him during the past six months, and my 28 years before that, has been anything but easy. But the time that we have shared together, the lessons that he taught me about living, the fun we had, the struggles he helped me through and the love that he has shown me is enough to last me 1,000 lifetimes.
As CF families, we suffer loss and understand heartache and hardship, unfortunately, all too well. But I have made the decision to turn my loss into unwavering strength and courage to point me in the right direction. Some people believe that our scars make us stronger, but in the end, I believe our scars are what heal us. Appreciate the people in your life while you have them, embrace them, nurture them and never ever take them for granted.
To have known the kind of care that my father gave me has been a privilege and for that I am grateful. I once read something that I've always hung on to and it resonates with me now more than ever, "I didn't come this far, to only come this far." I am going to laugh, I am going to smile and I am going to live. My father was my biggest cheerleader and now I am going to win this game.
July 2017 -- We were deeply saddened to learn of Amanda’s passing. Amanda opened her home to us for a photography shoot in 2016, and her heart to the CF community through our blog. She will be missed by many.
