Shawna's Mom
My daughter Shawna was born on October 13th, 1985. On that very first night when I tried to feed her in the hospital, she couldn't eat and I noticed that her stomach was swollen. The doctors then realized that something wasn't right, and they sent her down to the Children's Hospital in Boston. I remember my mom signing all the necessary papers, since I was only seventeen years old at the time. The doctors in Boston called a couple of days later and told us that Shawna had cystic fibrosis (CF), which causes an abnormal buildup of mucus in the body that especially affects the lungs and the digestive system. I had no idea what CF was, and in fact, I think that people back then just didn't know nearly as much about the disease as they do now. We had to go down to Boston to learn more, and the doctors explained to us that Shawna had this disease; it's genetic, and both parents have to carry the recessive CF gene for a child to get the disease. After six weeks, I learned how to feed her though a feeding tube and we brought Shawna home from the hospital.After some time she was able to eat and drink on her own, and she took the digestive enzyme pills in her applesauce. We didn't need to learn the PT (that's the pulmonary therapy where we work on her chest and back to help bring up all of the mucous that CF produces) until she was about a year old. Shawna did pretty well from then on until she was about nine years old, when she started coughing more, getting sicker, and having to stay in the hopsital. Ever since, she has had to be hospitalized once or twice a year. Recently, her lung functioning got worse, and we had to make a decision about a lung transplant. Shawna's doctor explained what we needed to know, and we sat down and talked it out. In the end, it was Shawna's decision, and as you can imagine, this news and the discussions about the future were scary for her. Shawna decided to go for the transplant: now, she wears a beeper and will go down to Boston when it's time for the transplant.
When I talk about our experience with cystic fibrosis, the phrase I keep thinking is, "We've been through a lot." It's true. But this has all brought us closer together and made Shawna an incredibly strong, bright and mature girl. She knows more about CF than I do!-she talks about tests in the lingo of the doctors (sometimes I don't have a clue!) and she takes pride in her responsibility. She has taken control of her treatments, and has gained a lot of weight in the past months with the help of a stomach tube.
My family (especially my mother and my aunt) has been extremely supportive. They don't treat her differently, but they watch out for her, and they have made the effort to learn about the disease and even do the walk-a-thon to raise money for CF research. Shawna's friends have also been a great source of support. They're always asking her whether she took her medicines or did her breathing machines and everything else she's supposed to be doing. Her CF pen pal has just gone through a lung transplant, and writing to her has also helped a lot to put her at ease.
With the support from her family and friends, our strength will carry us on. They all believe in her, and so do I. Her courage and strength will be important as she faces her transplant, and we'll be behind her.