O.K. where were we?
Oh yes, late 1999, Shawn was working like a dog as usual, I was immerse in nursing school, still hellbent on getting a doctor to take me seriously. We were raising our 4 yr old dgtr, and oh yeah planning our wedding which was set for June 11th of 2000.
In January of 2000, we rented and moved into a beautiful single family home ON the ocean We were on a peninsula, the water came up to our back yard and the beach was across the street in front of the house. Ocean air rushed directly through our home, front to back. We could watch the sunrise and the sunset everyday. It was beautiful. Our lives felt perfect.
In January we also found a pulmonologist, Dr O. who had diagnosed a man over the age of 50 with CF.
I contacted him, he agreed to meet Shawn and then he simply sent Shawn to Children's Hospital for the "sweat test".
Our lives changed.
On February 14th of 2000 the results were in. While I was studying in my school library, Shawn called me, he said he had been called with results from the sweat test.
Shawn said "Babe, they said it was abnormal. Babe, what does that mean?"
It was horrible.
In that instant, it was unbearable.
I knew what the diagnosis of CF carried with it.
I never so badly wanted to take something back. Why had I been so stubborn, why did I push this, why couldn't I have dropped it. Why was it so important to me to be right.
I was handing him a death sentence.
I was responsible for causing him pain, I was hurting him. I was hurting this wonderful man, he was the ideal father, friend, and lover. He was soon to be my husband. I felt like a horrible person.
Over the next few weeks, they completed his genetic testing. He had a definitive diagnosis of Cystic Fibrosis.
After additional testing it was determined that his body was functioning very well. He had no need for additional treatment. We were cautioned to look out for s/s of respiratory infection, pancreatic insufficiency, etc. He was instructed to continue working, exercising, eating well etc. Normal things.
Shawn seemed to me, pretty oblivious to the implications of a CF diagnosis. He continued to live as he always had. To Shawn it was more like having a name for his allergies.
Interestingly, after our living on the ocean for a only a few months, I noticed Shawn didn't cough anymore. He never coughed and he had gained about 5-10lbs. Life was good. We were all happy and prospering. I felt like perhaps he had dodged a bullet. I was content to let this sleeping dog lie.
On June 11'th we were married. The happiest day of our lives.
Rest in Peace Aunt Marybeth
2 years ago