Most o the people I know who have CF or have a loved one with CF are very resilient. My wife and I had 3 kids, 2 with CF. Our daughter,Ann, died 11 years ago at 40 years and 11 months. Our son, Tom, is now 45, and has had a much “easier” case of CF. She was sick a lot, hospitalized, on IV antibiotics etc., several times a year. he has been hospitalized for CF issue 4 times and had been on IV Antibiotics maybe 6 times in his 45 years!
When you’re dealing with CF, my wife used to say, it either makes you or breaks you. Fortunately for many people we know, it has made them, and this basically means they are more resilient. You learn how to deal with small and large emergencies. I look at resiliency as a muscle that needs exercise, and with CF in the family it gets a LOT of exercise! But too much exercise especially when you’re not use to exercise can damage your muscles, and “break you”.
Our “resiliency”‘ was helped by a very supportive family, medical staff, and friends. We were devastated when the 2 kids were diagnosed 6 weeks apart. Ann was hospitalized with bilateral pneumonia at age 6, and then diagnosed with CF. Tom was born about a month later and diagnosed at 2 weeks. So we got hit with a double whammy.
Fortunately we had supportive friends and family and an excellent doc. They helped us absorb the blows of diagnosis and as the kids grew and responded to treatment, we saw that there was hope. As time went on we developed more of our resiliency muscles which helped us deal with Ann’s continued illness and Tom’s occasional ones.
Ann’s death almost took us out. But we were stronger than we thought – that earlier resiliency exercise helped!
Resiliency does NOT mean happy or fun. There are definitely happy and fun times, which help a lot. And coming out of a very hard time, mostly intact, makes you even more resilient. It’s a lot about leaning how to cope. And with family and friends and support from groups like the people involved with the CF Foundation we have learned how to cope as well as we can.