In two previous posts this spring and summer (Birds of a Feather and CFS Moms Lunch), I told you about how wonderful it's been to meet a bunch of local Moms whose kids/teens all have CFS, OI, and/or Lyme. Well, last evening, one of the moms hosted a backyard picnic for all of our families, and it was so much fun!
There were four of us Moms who'd met previously, plus all of our kids (sick and healthy), two husbands, and two new families - nineteen people all together, all of us linked through our common experiences with CFS and related illnesses. One mom and daughter drove three hours for the picnic! They haven't found any other teens with CFS locally, have had some terrible experiences with doctors, and were desperate to find someone who understood. The parents all talked non-stop - we had so much in common! Best of all, the teens all got along great and had a blast together.
Several of the teens have been living an isolated life, homebound for years and cut off from their old friends and classmates. They were right there with the rest of the group, talking and joking, playing games, and even playing out in the yard. One Mom watched her two sons play Frisbee with the other kids and said she was on top of the world! I'm sure some of those kids are hurting today (as Jamie and I are), but hopefully, the joy and companionship were worth it. As we got in the car to leave (at 10 pm!), Jamie and Craig shouted, "That was so much fun! We have to do this again!"
What an experience for these teens who normally either live in isolation or struggle to get by and appear normal among their healthy peers, to be in a group of friends who instantly and intimately understand what they're going through. I don't think the kids talked much about their illnesses - they seemed to just enjoy being together and making new friends.
Ken and I were both completely wired when we got home and tried to go to bed. We'd enjoyed hours of stimulating conversation with parents just like us. All in all, it was a wonderful evening.
I have had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since March 2002. Both of my sons also got ME/CFS at ages 6 and 10. Our younger son fully recovered after 10 years of mild illness. Our older son still has ME/CFS and also has Lyme disease plus two other tick infections. This blog is about how our family lives with chronic illness, with a focus on improving our conditions and enjoying our lives in spite of these challenges.
5 comments:
Super!! How great for all of you....
How wonderful! It must have been great for all the young people to be able to socialise with their peers who understand what it is like living with a chronic condition- and it must have been great for you too!
Wonderful!
It is so important to be around people who understand. Then you can relax and have a good time!
D.
Fabulous, Sue. Just fabulous! The ability of the parents to share and for the kids to be with others who understood is an experience of a lifetime.
How wonderful! I know how it's important to find people that understand! And it will help the isolation! How did you get connected with all of these people in your area?
Laura
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