Editor's Note: These comments are from John Bartelt's evaluation form submitted after the retreat. John serves as our retreat counselor and leads support groups during the year for our community. In the past, CFRI has always sponsored a camp just for children and adults with CF. This year, CFRI expanded the idea to include families. The following statements are the author's reflections on the changes.
CFRI's new format of the CF Family Retreat outshined camp in many ways. The inclusion of parents and siblings allowed the kids to share with their own family members the special things that camp had given them in past years. Thus, the family as a whole is now a part of this important week. Instead of having a superb and intense time that kids had to "leave behind," they can now remember and discuss it with family members who were actually there with them. I especially enjoyed watching the parents and siblings become a real part of this week with the kids, and sharing with one another in their own right. It seems to me that this retreat idea has enabled us to transcend the isolationist aspects of camp by including the family and I believe it to be an even more significant and important growth activity than ever before.
Because of the nature of the facilities and the retreat format, a few thumpers were unsettled by the new restrictions placed on their activities. It is indeed something different than camp. Campers can no longer share cabins (currently, they share a room with their family or guardian) and stay up late in their bunks talking to each other. They used to learn a lot about CF and themselves that way. But in all, it was not worth the medical risks of cross-infection and now we can provide the same insights through different activities. Frankly, there used to be the consequences of low-energy and tiredness among thumpers who were up all night. Now everyone is getting more sleep.
At any rate, we are here, even more than ever, to work, to educate the kids, to unify the families. We have had a wonderful opportunity to take another giant step forward by including the campers' families in one of the most important weeks of their lives. I feel happy to have the families share in this new experience.
I've spent years with the CF community, and it has always felt piecemeal: parent groups, younger groups, adult groups, older thumper groups, sibling groups, male/female groups, CF/non-CF groups and so on. This retreat was the first time that I really felt the entire CF community bond together, and it wasn't because of any group session, but rather by way of shared experience. That is very rare and you cannot provide it in any other way. It's magical to watch the families bond, and to see thumpers included in a kid's whole family. I am always moved by the intensity inherent in the CF community, but this week was even more special, because it involved everybody, together.
This retreat, and the people who are a part of it, are an invaluable part of my life; I wouldn't miss being a part of this.
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