Planning Summer Get-Togethers

By Rebecca Moore

Originally Published in Pediatric Network News February 2004

For one week in 1996 I was surrounded by other teenagers, gathered for a unique slumber party. We all had chronic fatigue syndrome (CFS) and had been pen pals, youth advocates, and worked together on a youth CFS newsletter. After meeting in person at a landmark government meeting where pediatric CFS was first addressed, we knew how much it meant to spend time together. We began planning a follow-up event, which would be strictly social. After years of illness, we were ready for some fun.

Planning a reunion involved significant help from our parents. We lived in New York, California, and Ohio, and many of us were quite dependent on our families for assistance with activities of daily living. We agreed to meet at my house in New York during the 1996 Summer Olympics. By spending a week together, we’d allow a number of days for recovery following travel, and with the Olympics on television constantly, we’d never be without a shared activity to focus on. Lying around and watching the Olympics fit our energy level perfectly.

My family turned its lives upside down for a week for me, and I was so grateful. It wasn’t just that my parents and siblings gave up their bedrooms for guests. We changed everything. My mom generously cooked for several different special diets all week. We brought chaise lounge chairs and extra pillows into our living room, so that all four youth could lie flat simultaneously and our parents could sit with us, too.

We lived on a flexible schedule all week, with the agreement that each youth would sleep or go have quiet, private time whenever she needed to, no questions asked. That way we got as many breaks as necessary. Everyone was to eat when she needed to, and to not feel like a formal guest in our home. Despite keeping our own, unique sleep schedules (you know CFS and insomnia…) we often met up in the middle of the night, and gathered in the living room to watch Olympics or late night shows together. It was a treat to have company at any hour of the day – to no longer be so isolated by insomnia and by daytime activity restrictions.

We allowed several days of rest so that everyone could recover from traveling, and then we planned an outing to New York City. We drove around Manhattan, viewing famous buildings and parks from the comfort of our minivan, and then ventured out on several outings using wheelchairs. It was a nice change of pace in the middle of the week. In the later half of the week some pen pals that lived within driving distance came to visit on day trips, and we also planned a few short car rides so our visitors could see parts of the Hudson Valley town where I grew up.

I reveled in the possibility of having friends around me all the time. This extended slumber party was a much-needed reprieve amidst some very difficult years, before the connection between CFS and orthostatic intolerance was known, when my friends and I could often hardly sit up. For one, wonderful week, I was constantly surrounded by laughing, compassionate, normal teenagers, who completely understood my odd world and whose lives I understood as well. We got to be normal kids for a glorious, brief time.

I also had a negative experience with a CFS gathering, when our group again planned a weeklong sleepover. This time, the host family all caught the flu and bronchitis, but didn’t alert us prior to travel or cancel the gathering. They were miserable, and the last thing they needed was for a group of physically limited guests to descend on their home. If we had known that they were ill, we definitely would have postponed the trip. I caught a touch of the flu either on the plane or at my host’s home, and had to go to the ER twice to get IV fluids. We had discussed this possibility ahead of time, so my hosts knew ER trips might be necessary and had agreed that this would not be a big deal. However, I don’t think the likelihood of this had sunk in. They were unaccustomed to the severity of my CFS and the ER trips frightened them. I think they assumed that if they were as sick as I was, they would just stay home, and not travel. If I had traveled with one of my parents, they might have been able to lessen the strain on our hosts, but as it was, I traveled with a sibling, who was too young to have a driver’s license. The stress of having ill guests was way too much for a family with the flu, and dropping my sister and me off at the ER twice was probably the last straw. We ended up going home early and our memory of the trip is of a stressful time.

Sometimes forum members share the wish that they could get together with friends they have met online. Most probably have a smaller goal in mind than to create a weeklong small sleep-away camp for CFS teens in their home. Planning regional day-trips for an afternoon meeting is an easier way to start.

If you are considering hosting a gathering for chronically ill youth in your home, here are some details to consider:

• Is your family on board? What will this mean for healthy siblings and spouses, and are they willing to assist you?
  
  
• Is your home the best place to meet, or do you prefer that guests stay at a nearby hotel?
  
  
• How much energy do you have for assisting guests? Be clear about what you are well enough to do and where you must set your limits.
  
  
• What will you do if you or your child is too ill to host the gathering? Agree with your guests ahead of time about plans to postpone the meeting if necessary. There is nothing worse than a gathering gone wrong because the host family all has the flu and wishes they hadn’t gone ahead with the plans for the visit.
  
  
• Do you have the foods your guests will need? Do you already cook for a special diet? Agree ahead of time on the groceries you’ll need to have on hand, and let your guests know if there is a special grocery store you can go to together.
  
  
• Will you require youth to bring a healthy parent with them? If not, are you prepared to go to the ER with your young guest if they need IV fluids or other treatment? Be clear about what you can handle ahead of time. Setting limits and asking youth to bring a healthy parent with them can make it easier on everyone.
  
  
• What is your comfort level with having guests with significant limitations? If your family is relatively active, despite the impact of chronic illness, how would you feel about having a guest who needs to remain supine most of the time, even for meals? If you can adjust your mindset and not be threatened by the many different presentations of illness, you can include all kinds of wonderful people who otherwise would not get to visit friends or go to a sleepover.
  
  

I think the gathering at my house in 1996 went well because my family was accustomed to severe CFS and was ready to be flexible and support a wide variety of needs. We were lucky that my family members were healthy, able to take time off from work, and enthusiastically on board for this little project. Their energy level, adaptability, and generosity helped them give us a wonderful gift: a week of feeling like a normal teen.

As the 2004 Summer Olympics draw near, I’ve been recalling this wonderful reprieve from the lonely, stressful life of a youth with chronic illness. I wanted to share my experiences with you so that if you consider planning regional get-togethers with forum members, these stories can help you think ahead and anticipate what’s needed for a low-stress, enjoyable time.

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