Why we do this and who we do it for
It would be so easy to focus on the negatives that Cystic Fibrosis brings into the lives of the families of children with CF.
I refuse to dwell on that aspect of “our” Tori’s life. It took enough from her when she was alive that I refuse to let it overshadow our memories too.
“Our” Tori was born Victoria Danielle Cook on March 13, 1987, a happy and beautiful 7 lb 13 oz, 21 1/2″ bundle of joy. She was diagnosed eight months later with the disease that would take her MUCH too young 15 yrs later May 17, 2002.
But her story is like an Oreo Cookie ~ with ALL the “good stuff” in the middle.
She lived! She laughed! She loved!
She loved her Lord, to play softball, the Braves (Chipper Jones), the colors blue and purple, M&M’s, Ty Beanies, trips to Gatlinburg, her family, her Dr’s & nurses, her FMP & ITS family, and her favorite TN Titian was Jeff Fisher!
Her laughter would warm your heart, her smile would light up a room and her courage and determination would put you to shame. But then again she was my “Timex Kid”. She would take a licking and keep on ticking. Watching how she lived is what helped me cope with her passing. She simply deserved the rest!
The Cystic Fibrosis Disease
Cystic Fibrosis, or CF as it is commonly called, is a disease caused by an inherited genetic defect. About 1 in 20 people in the United States carry at least one defective gene, which makes it the most common genetic defect of its severity in the United States.
People with CF suffer from chronic lung problems and digestive disorders. The lungs of people with CF become covered with sticky mucus, which is hard to remove and promotes infection by bacteria. Many people with CF require frequent hospitalizations and continuous use of antibiotics, enzyme supplements, and other medications. The life expectancy of people with CF used to be very short; 30 years ago the median life expectancy was about 8 years. Today, thanks to medical advances, the median life expectancy is in the mid 30s and increasing.
CF used to be known as a children’s disease, but as medical advances increase the life expectancy of people with cystic fibrosis, there are a new set of problems— going to college, getting a job, finding health insurance, building permanent relationships— all while keeping up the physical therapy and medications.