Welcome, Jenifer. Like, you I had a child diagnosed when she was older; she was five, and we did the test "just to rule it out." Everyone was sure it was not CF, because she gained weight, and did not have many of the symptoms of CF, other than a tendency to have colds escalate into infections and pneumonias. For what it is worth, then, I thought I would share my perspective on what her diagnosis has meant to us.
It was hard to accept the news, and even harder to learn how to incorporate CF care into our routine. However, 3 years later, I am so grateful she was diagnosed, because I can see how her treatments help her. My daughter (both daughters, actually. Her little sister was also diagnosed) was in that class of CFers that would not have been diagnosed before genetic testing. She would have been basically healthy, except for the pattern of lung infections. They would get treated, but each time, her lungs would not fully recover. With treatments, she does not get sick as often. For the first time in her life, she gets colds and gets over them. Her lung function has actually increased, and it is excellent. It has stayed high. At 8, she is now starting to take some responsibility for her own treatments, and she is proud of what a good job she does taking care of her lungs.
I don't know when things will change. I watch every cold and PFT a bit nervously, because I know that there are harder stages ahead. However, I also know that every day, we hold that future off by doing treatments and PFT. I also know that it does me no good to focus on the things I can't control -- not when there are things I can do.
We have been very clear with EVERYONE around our children -- family, teachers, friends -- that they are not doomed. They are strong girls who work a bit harder than others to stay healthy. My children hear stories about the adult CFers on this site. My husband and I talk about how we can raise children that will be ready to assume responsibility for their care in college and beyond. While I cannot control the course of the disease, I am convinced that it does my children no good to assume the worst, and great good to assume the best. For us, that has meant making sure CF is a part of their life, but not the only thing that defines them. For us, it meant not getting rid of the dog, because he does not seem to be a problem for them, and they love him very much. We change what we need to change, but only that.
CF care has come so far, and the new research on genetically tailored treatments holds great promise. Our children, I hope, are the generation that will live to see the cure, or at least the therapies that make CF a managed chronic illness. We pass the stories about this research on to our families. We have given up gifts in exchange for donations to CF research. That has helped shift the mood in the family to the positive.
It took time, though. The first year, there is a lot of grief to get through, and tension because everyone who loved the girls grieved differently. There were lots of sudden waves of sorrow for me, and runs to the bathroom so the girls did not see me sob. That does pass in time. CF is just part of our life now, and we can see how the diagnosis and the treatments have been a good thing. They give us a way to protect their lungs; they give us a way to resist the disease.
