CF Adult Retreat

It is Wednesday and now a week of official waiting has past. We are on the other side of the anxiety of waiting to wait and not yet to the anxiety of waiting. It is too early yet. Anna wanted to go to CF Retreat this week. The past two days every time the phone rang she said, "oh, please don't be the transplant. I just need to go to Retreat first." Not great thoughts for the formula to Manifest or maybe it is because it is her manifestation, when she decides.

I helped Anna pack and the car was loaded with pillows for doing treatments, luggage with clothes and shoes, medicine, air compressor, fan, costumes for fun and shenanigans , portable oxygen tanks and tubing, and, and. Retreat is like summer camp for these guys. It feels like Christmas when they get there, so excited to see each other and begin a day with fun activities, arts and crafts, yoga, entertainment and down and dirty rap sessions where the truth is told to witnesses who understand. It is truly special and something they yearn for all year long. There are a few newbies this year and I am sure they will be hooked. It is such a rich and great experience to BE with others who share your situation. There is nothing like it.

This type of Retreat is rare to find. A number of years ago there was a law suit against the National CF Foundation because it was claimed that a child contracted a bad strain of bacteria at one of their camps. There was then some evidence that patients could share bacteria with each other as well. So, all camps were closed down. All coming together was curtailed and fear ran rampant. Fear keeps people in line. Our community was taught that they should be afraid of each other and each other's "bugs". As new families came into our world they were encouraged to never allow their children to get together with other CF children. This fractured the community. This is one of my bug a boos. This drives me insane. The antidote to fear is education and learning responsible behavior. If we were honored as an intelligent community as I believe we are, we can follow guidelines that provide a reasonable and safe way for CF people to interact and know one another face to face. How strange for a child to grow up with this disease and not know another child who suffers in a like manner?

My family is of an earlier generation where Anna did go to CF summer camp and always had CF friends. She did not develop her lung disease because of them. Camp was the time of her life. It was where she really learned how to LIVE with CF. She bunked with other girls who did treatments and took numerous pills and coughed and got tired. She went to the rap sessions and cried when a camper did not return because they had passed away. She laughed and laughed at the silly pranks. She developed deep and lasting friendships. She grew in responsibility in the sessions where Dr. Delano taught them about good hygiene and how to eat well. It was formative and wonderful.

Our summer camp was run by our local orgaization, CFRI and not the Foundation and we are so grateful that CFRI had the foresight and depth of caring for community to find a way to cope with the new legal and scientific environment that engulfed our nation wide community. At CFRI we did our best to not run with the fear but rather to educate. We learned what would make a reasonable gathering of CF people that would be safe and offered that. Unfortunately many families were terrorized by the information coming out of the Foundation and support dwindled but it did not die! We still have a loyal group that is hooked and would never give up Retreat for anything. Over the years many expressed that it was Camp and Retreat that gave their lives meaning and kept them going through the hard times. Thank you CFRI for sticking in there and making this possible! I wish more would join in. It is a safe and loving place.