It is May and it is Cystic Fibrosis Awareness Month. My sister, Jennifer was born with this harrowing disease. I didn’t have the luxury of knowing her until we were fifteen, as she’s my husbands blood sister, but we were pretty damn close. We lived together, we did the girl gossip, I was at the hospital every day after school with her, and even moved to Jacksonville when she needed a double lung transplant. Yeah, the entire time I was dating my future husband, but family doesn’t begin or end with blood.
I watched her battle the disease for a decade. Until she had her transplant, Jenn never took a breath without coughing, she never went a day without breathing treatments or respiratory therapists coming to see her. There were times when her weight fluctuated so low she looked like a skeleton, and times when she filled out beautifully as a young a woman.
Jenn was a person who thrived on life. Even at her lowest point, she found ways to enjoy it. The disease is incurable, and ultimately, after five years of a relatively normal life after her transplant, the disease claimed her three months before her 25th birthday.
If you’re not familiar with Cystic Fibrosis, in simple terms, it affects the lungs and the pancreas. The lungs fill with so much mucus that a person can actually drown in it. At some points, Jenn had a suction tube to hold onto so that when she coughed up balls full of it, the tube sucked it out so she didn’t swallow it into her belly or aspirate on it. Regarding the pancreas, well that organ provides the enzymes people need to digest foods. Without them, anything we eat runs through the body without any nourishing factors. Jenn would have to take two enzyme pills with every meal or anything she ate every day in order to digest the food. Even after the transplant, the enzyme pills were a must.
It’s not an easy disease. She’d had plenty of surgeries over the years. You can see the various types of scars from these beautiful women who decided to show their CF scars proudly! They are brave, strong women who have been through hell and back.
Every day I miss her. Every day I know my husband misses her more. There is no cure at present for Cystic Fibrosis, and even if you can’t donate money, just make people aware of it. The more people who become aware, the more people who can pass on the word to those who can donate, or do something to help those in their community, or maybe it just connects people who have been through similar situations.
To those living with the disease, you are brave, strong, warriors.
Never Give Up. Never Surrender.