Jenna is a force to be reckoned with. You look into those big brown eyes and she has you hook, line and sinker. You are melted into putty and cannot help but love her joy and zest for life.
Like most six year olds, Jenna loves anything to do with Hello Kitty, Jessie from “Toy Story” and Figaro, the stuffed cat her grandma brought for her in New York.
Jenna is also a child living with Cystic Fibrosis, a disease that threatens to rob those diagnosed with the condition of their life.
Finding out that I was going to be a grandparent for the first time was such an incredible experience. It is a gift not everyone gets to enjoy.
Then the first ripple in the water. My pregnant daughter needed testing; something was not right with an ultra sound.
Our family knew before her birth that Jenna would have the condition known as Cystic Fibrosis, or CF for short. We all had four months to adjust to the news. With her birth came all the joy any new addition brings to a family. What also came with her birth was my concern for her future.
As Jenna’s grandma, I vowed I was going to love her unconditionally, no matter what limitations or conditions she could possibly have. Knowledge is power, so I began reading anything I could get my hands on about the disease.
I have learned that CF is an inherited condition, a disease of the mucus glands that affects many body systems, causing this abnormally thick and sticky mucus to lead to problems with digestion, problems with breathing and lung infections (http://www.cff.org/).
The CF web site also says that in 1995, CF kids did not live long enough to go to grade school.
Improvements in treatment of CF have increased the median age of survival to mid 30’s for children diagnosed in 2009.
Sorry, but that is simply not long enough. Live only into their 30’s? Since I am 52 years old, I could quite possibly outlive my granddaughter. I find this totally unacceptable. Parents are not supposed to outlive their children and we grandparents are certainly not supposed to outlive our grandchildren.
While waiting for cures to be found, families living with CF learn to make every day count, living life to the fullest. Everyday moments take on special meaning, becoming etched in our minds.
You will have to excuse me now. I have an appointment with a very special young lady. We have nails to paint and perhaps a game or two of “Pretty Pretty Princess” to play.