The Gossweiler family (from L to R: Chrissy, Linda, Rob and Gregory) have not let CF stop them from enjoying life and one another.
Linda Gossweiler knew something was wrong when her 18-month-old daughter, Christina — or Chrissy —, was constantly hungry and eating around the clock. Although her daughter was growing well, she had to eat an enormous amount of food to maintain that growth. Linda, a nurse who also had a 3-year-old son, knew that Chrissy's appetite was not normal. After repeated trips to the pediatrician, Chrissy was finally tested for cystic fibrosis.
"We didn't have a history of CF in the family, so we were shocked when Chrissy was diagnosed with the disease," said Linda. Determined to understand the diagnosis, the Gossweilers learned everything they could about CF treatment and care. They got involved in the CF community and initiated an extremely successful GREAT STRIDES walk in Frederick, Md. to help fund the research needed to cure the disease. The family's determination to provide the best care for Chrissy and her own commitment to her health have served her well. She is now a successful high school senior, preparing to travel hundreds of miles away from home to attend University of North Carolina at Chapel Hill.
Commitment sat down recently with Chrissy's mom, Linda, to talk about how the Gossweiler family prepared Chrissy — and themselves — for this change.
How do you feel about Chrissy going away to college rather than studying at a school close to home?
Chrissy worked hard throughout high school, and was offered a terrific college scholarship. She decided she just couldn't pass up the opportunity. It was completely her decision, and I tried not to influence her. It's scary to think about her being so far away, but I know it's a part of her growing up. Chrissy wants to major in business and go into economics or law. College is just the next step to becoming an adult with a full life.
How have you prepared your daughter for such a big change?
Chrissy has always been good about taking care of herself. From the moment she was diagnosed, treatments have been a non-negotiable part of her life. Just like everyone else, Chrissy has a daily routine — only hers includes taking her meds and doing her breathing treatments. We've always approached treatments with a positive attitude — instead of complaining about them, we're thankful that therapies even exist.
Few things help an individual more than to place responsibility upon him, and to let him know that you trust him."
Booker T. Washington
How much of her own care is Chrissy responsible for?
Now that Chrissy is 17, she's been taking on more of her own care. She's been doing breathing treatments independently for years, but recently she started administering her own meds, and making more decisions about her personal care. She gets examined at the clinic by herself — though the doctors do still call us in at the end to discuss how she's doing.
Have any problems developed as a result of Chrissy taking over her own care?
This past fall, Chrissy's health declined because she didn't notice that her cough was getting worse. I kept asking her about it, but she said she was fine. Eventually we had to start Chrissy on an antibiotic, but by that time, she needed more serious care. The doctors wanted to admit her to the hospital and start an IV, but Chrissy was upset because it was Homecoming weekend, and she had been nominated for Homecoming Queen — so the doctors agreed to admit her on the following Monday. By then, Chrissy had pneumonia and was the sickest she had ever been. It took about two months for her to fully recover. But the experience taught her to listen to her body and read the signs. After all, we're not going to be here forever, and Chrissy is going to want to live on her own. Now she understands better how to react to what her body is telling her.
What kind of medical care can Chrissy expect at college?
We met with student healthcare services at the college Chrissy will be attending. There are two other students with CF on campus, so the school is familiar with the disease. We will make sure her meds are ordered, and the health services office will make sure Chrissy gets them. For regular clinic visits, Chrissy can attend the CF clinic at Chapel Hill since her college is in North Carolina.
What advice would you give to parents of young adults who are becoming more independent?
I would tell parents to allow their children to make decisions. We have to guide our kids in the growing process — and arm them with all the right tools — and then trust them to use those tools to make good choices, maintain their health and lead full and happy lives. Chrissy would say that it's very important that people with CF do their therapies, no matter where they may be, because that's what will keep you healthy and allow for a life filled with great experiences. You have to trust them.