We weren't really sure what to expect with the retreat. We had heard good things about it, and it was almost a no-brainer to go since the clinic was only about 5 minutes from the Glen Club where it was held.
The Glen Club was quite nice. It was essentially a country club with rooms for events like this.
When we arrived, we had a nice breakfast of fruit/bagels/pastries and coffee. It was nice, but hardly a meal for someone on a weight gain diet. I was hungry by 9, and breakfast was at 8. At least the catered lunch was Awesome. Lots of pasta, meatballs, salads and meat. I was shaking I was so hungry. By the time I was done, I was loosening my belt and going for coffee...
The different sessions (general assembly, small hand-picked seminars) were quite good. The one session that impressed me the most was definitely the one that Dr Woo from USC spoke at. She was incredible. Very articulate, very well-versed. She is, simply put, a pioneer in lung transplants. She is on the cutting edge of research and science.I was thoroughly impressed and actually leaned over to Jenn and said that if, God forbid, I should need a double lung, I will have her perform it. It was really eye opening, and her success rate is unparalleled.
Jennifer and I shared on an adult panel during the 2:00 session. We each had an opportunity to talk about how CF had impacted us personally. Jenn did champion work. I was very impressed with her. She did a fine job.
I was able to field questions regarding adult life with CF, the IVF process and parenthood. I wish that we had more time, as I felt an audience connection, but alas I'm thankful for the time that we had.
Lisa Bentley also spoke. She's a 10 time Ironman triathlon champion (including the big one in Hawaii). She gave us a great motivational speech on getting out there and exercising and not letting obstacles get in our way. Her passion was apparent to all. She taught us to work hard, have a good attitude and not give up. She was inspirational, exuberant and genuine. I was so glad that they brought her in. Oh, by the way, did I mention that she also has Cystic Fibrosis?...
Lisa Bentley and I
Jennifer and I with Mindy, my research coordinator and clinical nurse and Dr. Boas, a true CF clinician and researcher
Jennifer and I with Dan and Katie from DeKalb. Dan and I are going through the drug study together. They are becoming good friends and are dear Believers.We left around 4:00 and hit rough traffic going in and then out of Chicago. Funny thing was that we decided to stop around 7:00 to get some dinner at a KFC. We pulled into the parking lot and there was a big bus of kids and adults getting out of the bus and running into the KFC. Jenn and I both groaned, knowing that this was going to take a little longer than expected. We decided to go through the drive-thru when we passed the 40+ group of people and Jenn says, "Is that Heidi Beck?" We had pulled into the same place as the Big Fish group that had also gone to Chicago for the day. We said hi to everyone, got our dinner (by way of the drive-thru), drove down to Jenn's folks, picked up Madalyn and drove back to Champaign. Made it home about 10:30, exhausted.
My eyes were opened at the conference. Yes, I learned about some new medications that will help, but most of all, I was reminded what is most important to me. When I was sharing during the panel, I shared that perspectives change when you have children. That is oh so true. I was reminded on what is important in life. My family needs me, and Jenn and I made a commitment to do everything possible to keep me healthy. Working out regularly, doing all my treatments, taking all of my meds and getting good nights of sleep. I have a newly realized heightened appreciation for the good health that I have, and I want to keep it. Who knows...maybe I'll run a marathon some day!
My eyes were opened at the conference. Yes, I learned about some new medications that will help, but most of all, I was reminded what is most important to me. When I was sharing during the panel, I shared that perspectives change when you have children. That is oh so true. I was reminded on what is important in life. My family needs me, and Jenn and I made a commitment to do everything possible to keep me healthy. Working out regularly, doing all my treatments, taking all of my meds and getting good nights of sleep. I have a newly realized heightened appreciation for the good health that I have, and I want to keep it. Who knows...maybe I'll run a marathon some day!
2 comments:
Yay for new perspective! I believe in you! You CAN run a marathon some day! Let's keep you healthy, babe!
You both are an inspiration. God bles your beautiful family!
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