By Sonya Ostensen
SO: Since May is the month we honor our mothers, I began to reflect on what my mom went through after learning about my CF diagnosis. I have been privileged to also become a mom, and the mere thought of our daughter being in pain either physical or emotional, is devastating; let alone if she were diagnosed with a chronic disease that has no cure. Obviously, my mother was horrified by the diagnosis, but I never sat down and talked with her one on one about how she endured CF as a parent. So, I prepared a list of questions to start the conversation. Please welcome the one and only Patty Molli, a.k.a. Mom!
1. What was your initial reaction and emotional state when you first learned about your child’s CF diagnosis?
PM: After being misdiagnosed since birth, a new doctor, fresh out of college, saw my daughter for a girl scout camp physical. Sonya was 12 years old. I explained symptoms as I had done many times before to different doctors. He took one look at her fingernails and said something was wrong. That is when the tests began. After 3 months of difficult test procedures, the sweat test was suggested. We went with it and BINGO! I knew something was not right but had no idea what was to follow.
I was at work awaiting the results of a sweat test. A call came in from the doctor’s nurse. She proceeded to tell me my daughter had cystic fibrosis. I did not know what CF was and asked if she needed a prescription. The nurse was snappy and said, “You don’t understand! CF is terminal and the median age of survival is 18 years.” Well as anyone can imagine, I lost it. The nurse was incredibly rude, and I was unwilling to accept the prognosis. If I had picked up a brochure on CF, I could have diagnosed her myself. Sonya had 5 of the 7 symptoms. I get infuriated every time I think about it. In order to speak to the doctor, I had to make an appointment. That is when the CF treatments began.
2. From your perspective/memory; How did your child initially take the news of their diagnosis?
PM: The biggest mistake I made was searching for information on CF. The information at the time was doom and gloom.I was devastated. Again, I was unwilling to accept this and knew we could beat it. I never really went into detail with Sonya about her diagnosis; therefore, she did not fully understand the repercussions. Sonya was starting to feel better after receiving the enzymes and carried on being a kid.
SO: I remember when the doctors finally discovered that I had this thing called “cystic fibrosis”. After years of chronic digestion issues resulting in unrelenting hours on the toilet, cramps, gas, horrible bowl movements and no energy; CF brought enzymes into my life and it was amazing! I finally felt like a normal kid and no longer had to worry about staying close to a restroom. Of course, I had no idea the challenges CF would bring later.
3. What kind of support systems did you have at the time?
PM: My mother and father, other family, and friends were a wonderful support system. I do not know what I would have done without them. Being a single parent, the hospital stays were draining because I wanted to be there and not at work. We managed to work through it and Sonya was very strong minded to get well. She was a trooper.
SO: I do recall family (especially my grandparents on mom’s side) and friends always pitching in and giving time to help us out. They would come to the hospital and bring goodies. I usually had visitors which was uplifting. My dad (Tommy, who is not my biological father) would always bring my favorite foods like Donato’s Pizza and Chinese. Obviously, these were great calorie builders that increased morale.
4. What coping mechanisms helped you move forward?
PM: As time went on, I kept in the loop of different drugs, treatments, etc. I was always hoping and wishing for a miracle - I never gave up.
SO: My mom was very involved with CF walks through the CF Foundation. She would rally everyone we knew - family, friends, and co-workers - to participate in the walks. Even when I rebelled against the CF walks after college, my mom would still volunteer. Looking back, this is proof of her perseverance and hope to find a cure for this disease.
5. How were your goals/actions affected as a parent of a CF child?
PM: My goal was for my child to have a normal and vibrant life. We tried not to make a big deal out of the coughing and down times. Making time for PT was sometimes a challenge but having a brave daughter made it easier.
Check back next week for Part II.
About the Author: Sonya Ostensen is 45 years old with CF and resides in Melbourne, Florida with her husband and daughter. She received her BS in Environmental Sustainable Resource Management from The Ohio State University. After working in environmental health, she retired due to CF complications. She loves to travel with her family and experience new cultures with a passion for wildlife rehabilitation. Her favorite activities include gardening, baking, walking the beach, and especially climbing trees with her beautiful daughter. Sonya currently serves on the board of directors for USACFA. You can contact her via email: sostensen@usacfa.org.