When our son was diagnosed with CF, the clinic director sat with me for hours answering my questions. Since that day, I have wanted to bottle up his advice and become a voice of encouragement for new CF parents.
The road to rebuilding shattered dreams is not a straight one.
As a parent of two kids, I find myself wondering if Anna's CF is changing Jack. Would he feel the same responsibility for her if she didn't have CF?
Because my daughter's bowel perforated when she was a newborn, she needed to have surgery to temporarily reroute her stool so that it was collected through her abdomen into an ostomy bag. Those grueling days of ostomy care -- sometimes as often as every hour day and night -- were some of the darkest days of our cystic fibrosis journey.
My son has had a problem with eating ever since he was born prematurely and diagnosed with cystic fibrosis. After a lot of stress and anxiety about reaching his weight goals, we finally enlisted an occupational therapist, who helped him learn to love eating.