Shawna's Grandmother
My granddaughter Shawna had three operations before she was a week old. They took her to Boston when she was born because she was so sick. After about a week, we found out that she had cystic fibrosis (CF). After six weeks, we had to go down and find out how to take care of her; after we brought her home, we had to wake her up so much to feed her that I broke my alarm clock! But we had the time to make sure Shawna got her formula and medicine, because we had no other children around then.My family was a big help from the start, and none of them ever ignored Shawna. None of us had ever heard of CF, and we thought that no one had ever had itĦbut once we all started thinking about it, we found some clues, like my father's sister who was born in 1926 and died just a few days later, and other babies that had died in my family. My father himself was really small but used to eat a ton of food and coughed all the time; maybe he had a mild case of CF. Looking back, we realized that CF had been there, but nobody knew what it was back then.
Shawna was never a whiner, though, and really wasn't that sickly, at least not until she started to be hospitalized when she was about nine, and when we started having to go to Boston for appointments. That was tough. She used to tell me she wasn't going to tell anyone she didn't want anyone to know. I said to her, "You have it. That's it! Why hide it?" She grew to believe this too. Her friends are really good with her.
Recently, Shawna decided to get on the list for a lung transplant. We all talked about it a lot. It's scary, and I'm more scared then I even tell her. But I believe that after the operation, she'll be able to do what she wants to do and not worry about the oxygen and the machines and everything else. I tell Shawna that it's OK to be afraid. It's part of nature, and I tell her we'll get though it: we'll deal with it like we deal with everything else. I can take the time off from work more than her mother can (we all live together) and I'll stay with her.
Shawna's been great about everything, and you know, she really has a lot to do. She has to do her PT, her breathing machines, her feeding tubes, and her school and homework! Sometimes she doesn't want to do it, but she always does it.
There have been good parts to having Shawna's struggle with CF, especially the strength I find in her and the help from the family. But I'm not going to say it's easy. It cuts into my time; I work two jobs and it can get to be too much. But Shawna has never been depressed. My granddaughter has been happy-go-lucky about this her whole life. She's always smiling (the doctors can't believe it). I think that her attitude is going to help her get through the transplant. So yes, it's hard, and sometimes it seems like it's all too much, but Shawna is one in a million, and I would never trade her in!