In some ways, the beginning part of my son’s life was easy. He was “healthy.” Healthy for CF, at least. But truthfully, nothing about it was easy. It was the hardest thing we ever experienced.
He was my firstborn. The only things I knew as a new mother were NICUs and extended hospital stays. There were so many terms I’d never heard before — pulmonary exacerbations, bronchoscopies, surgeries, ostomy bags, NG tubes, nasal cannulas, IVs, PICC lines, and port-a-caths. By the time my son turned 2, I knew all of these terms explicitly.
My son was my whole life. I was born to be his mother. Every breath I took was, now and forever, for him and because of him. I’d never again take the gift of life and breath for granted. Not mine, and especially not his.
Every moment mattered. Especially the mundane ones. Even the silly ones, the seemingly dumb ones. At times, our lives may have looked a little ridiculous. But it was a sign we had fun along the way, and refused to allow a chronic illness to steal our joy.
When my son was little, I photographed every insignificant thing because I never knew which moment would be our last. I knew tomorrow wasn’t promised, and someday I’d have to give him back to where he came from. I knew he was one of God’s angels, and I was only borrowing him for a while. I just didn’t know how long we would have together. I wanted to keep him forever. It felt so unfair knowing he was likely to die before me.
I wanted to curse God, but knew I shouldn’t, so I cursed CF instead. Cursing it didn’t change it, nor did it make it any better or worse. Briefly, it made me feel better. Then, oddly enough, I started thanking CF for all it was teaching us. I thanked CF for everything it gave us.
From the very beginning, I recognized that CF is both a blessing and a curse. It was easy to see how it was a curse. One didn’t have to look very hard to see the immense suffering CF brought to us physically, mentally, emotionally, and spiritually. It would take a trained eye and spirit to see how it blessed us. One would have to look a little more closely, almost as through a microscope, to see all the good it brought. Everything good in our life came to us as a direct result of my son having CF.
CF brought with it the life lessons we learned along the way — individually and as a family. It brought people and experiences to our lives we wouldn’t have had otherwise. We can’t be anything but grateful for those.
My son having CF led me to research holistic health modalities. That interest introduced me to friends who became like family. Those friends connected me to a business opportunity. I took the opportunity and began working my first professional job in a small office setting. Taking that job allowed us to get our first home in an apartment complex. Living in the apartment, we made more friends. It was there that I met the man who would later become my husband.
My husband, Brian, became my son’s stepfather. At the time, my son was 19 years old and already had amazing male mentors in his life, but he never had one quite like a Brian. This man came into our lives and was undaunted by any health challenges that came our way. He bravely chose to love us and face any future challenges with us head-on. We learned it’s never too late in life to gain a father figure.
Meeting and marrying Brian gave us the beautiful, blended family we have today. Together, we have four children, all of whom we are immensely proud of.
Nothing about CF is easy, but if you’re willing to look for it, I promise you will find all the good that is there.
May your journey with CF be equally blessed.
Interested in sharing your story? The CF Community Blog wants to hear from you.
