I was born on a hot summer afternoon in 1972. My parents, 17 and 18 years of age, were ecstatic. I think they were probably pretty naive and they would admit to that if asked. They both left their family homes to live together in the fall of 1971 and were married in December. Uh yes, if you do the math, I was a “shot gun” baby. I didn’t care. I was loved. Dad dropped out of high school to take care of his family. I consider him a hero of mine. He made a very good living for all of us, still to this day. It was a huge burden for an 18 year old to endure. He refused to have my mom work. Mom also dropped out of high school but more on that in a later chapter.
I was born a healthy 7-ish lbs. There were no immediate issues, health wise. As I started to grow or actually NOT grow, mom became worried. I was on formula but not absorbing any of fit. I don’t know all the details of how sick I became in the 4 years before I was finally diagnosed. I know that I had several acute episodes of dehydration over those years, which landed me in the hospital with an IV in my shaved head. My mom thought she was a bad mom. Little did she know. Actually MUCH did she know. She was very worried for me and she knew deep down something was wrong. She continued her relentless fight to find out what. All the doctors kept sending her home saying I had the flu. My mom said I survived on @SunRype apple juice, the only thing that I could keep down. I was failing to thrive. I was dying.
Over those 4 years we welcomed my little brother, 15 months after my birth. He was a good baby and he was always sitting back seat to my issues. Mom said he was a happy baby. She also said I was a very unhappy baby. I would guess it was because I felt awful. I couldn’t tell anyone so I had to rely on mom to read my signs. She did. It was the doctors who let her down…for 4 years. Now of course dad was integral in these 4 years but he was working so hard to keep his little family of 4 with a roof over our heads, clothes on our bodies and food in our bellies. I am by no means dismissing his fear and exhaustion of it all.
Finally on a fateful day in August of 1976, one month after my 4th birthday, a diagnosis was finally reached. I HAD CYSTIC FIBROSIS.
To find out how this shook our world you’ll have to read Chapter 2.