Life Expectancy

So this past week some parents who attend CF Clinic the Alberta Children's Hospital were able to get together for a parent night. These nights are held once every two months and gives us a chance to talk to others who are going through the same thing as us. The one thing that is tough about it is trying to get both parents there. I've gone twice but like many of the other moms there, it's the dads that are staying home with the babies so we can go out and chat. This meetings are technically called a "Parent Support" night but it's not like we sit around crying about CF. We get to share experiences and learn new things from each other.

Most that were there this month were like us, fairly new to the world of CF. The clinic arranged for an adult patient with CF to be able to talk to us about what it was like to grow up with CF and give us that other perspective. He is 27, married, has gone to university and maintains a full-time job.

Listening to him talk was great and if I could take anything away from what he had to say was to let Nash be a kid. Yes, we have to be extra careful about certain things, but not to let CF run our lives. Listening to him speak made me think a lot about what Nash's future holds. Will he go to University? Will he get married? Have children?

We went to a wedding at the beginning of September and while the groom was dancing with his mother, another friend turned to me, giggled and said, "Some day that will be you and Nash." I've never said anything to anyone but that hit me in a weird way that night. All I could think was that I truly hope to see that day. P.J. and I have both said that our main goal for Nash is that he will outlive us. As recent ago as the 1960's the life expectancy rate in CF patients was 4 years old. With the research that has been done we were told when Nash was diagnosed that we can hope that he will live into his 40's. Possibly even his 50's or 60's. I recently just watched this video, it's 10 minutes long but it gives a good overview of CF and the advances that have been made. Every Breath Counts 2012 Video

The thing that many people don't realize is that Cystic Fibrosis is a progressive disease. Yes, he has been fairly healthy this past year and yes, lots of times CF patients don't "look" sick. People don't see what goes on behind closed doors on a day-to-day basis to maintain Nash's health or really know what we can expect for him as time goes on. It's not that we are trying to pretend that he doesn't have this fatal disease but we choose to think about the "right now" and not the "what if" of down the road.

I try to make sure that every day of Nash's life is full of love and happiness and I want every day to be cherished. I hope and pray for him to stay healthy and live a long life.