Mary Boleyn Arrives at RDU

July 16, 2017

Mary arrived to much excitement at Raleigh-Durham Airport.  We had everything prepared at the house for her stay.  We prepared a king-sized bed with separate bathroom, all her favorite foods (M&M Peanuts) and drinks (Kool-Aid – Grape), apples with peanut butter.

As soon as we got to the car, Mary insisted on opening her suitcase to show us two paintings she brought us. One by Clara and one by her.

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Some Things You Can’t Fix

This is my daughter and granddaughter on Fathers Day. I was asked to start the conversation about final arrangements for the funeral with my 34 yrso daughter. There are so many things to clarify. We went through approval on the obituary. The music was selected. The words to be read were identified. The letters to be read afterward and left for the next generation to discover were collected. The wishes for a party were discussed. There were tears on both sides. I expressed my anger at the inevitable. You see, this discussion was not about my passing, but for my daughter who has a fatal disease, called cystic fibrosis. It is a genetic disease that was passed from her mother and myself to her without knowing we both carried a recessive gene. It is, somehow, not right that any parent must have this discussion with their child. It is even tougher for a father to not be able to “fix” something for their child. I post this because baby boomers have learned that not everything in life is always fun. Some things cannot be fixed. I wear a CF bracelet to remind myself continuously of that fact. What source of strength from within you do you call upon when thinking and planning and fixing are not options?

Introducing Clara Sophia

The role of parents is to give unconditional love and do whatever it takes to increase every child’s self-esteem. I am so proud of my daughter Mary and Clara. What a journey the universe brings to spiritual beings.

Having a Child with CF

Life can be surprising. When you think you know what is going on, you don’t. When you think life cannot throw you anymore curve balls, it’s a swing and a miss at bat.

When daughter, Mary, was about a year and a half, she seemed to be holding onto colds longer than other kids. Mary’s mom thought it would be a good idea to have her seen by a physician. I agreed and we went together to the pediatrician. The doctor gave Mary a drug called aminophylline. Since I had been in inhalation therapy for some years, I knew what the results meant.  On the way home from the doctor, I said to Mary’s mom, the only time I have ever seen a child literally throw up mucus after being administered aminophylline was with a diagnosis of Cystic Fibrosis. She started screaming at me that I was a terrible person for even thinking that way. We drove the rest of the way to the cabin in Elora without saying a word.

When we arrived at the cabin, the phone rang immediately. It was the doctor calling. He said that he needed to see us right away about Mary. The next few weeks were a blur as I slept on the hospital floor in Mary’s room. They ran a sweat test that conclusively showed young daughter Mary was born with CF, a genetic disorder passed from both parents. Neither of us had any history of CF in our families.