I just came back from a family road trip to Mississippi where we were visiting my husband’s brother and his family. They have four beautiful children, two dogs, and a cat, and we enjoyed our visit with fishing, target shooting, playing games around the kitchen table, and exploring Memphis, TN. One of our daughters and our son who is in high school joined us for this long-awaited excursion; it had probably been ten years since we were there last. After much thought and family discussion, we agreed to leave our daughter who has Ehlers Danlos Syndrome at home. Those who have not walked in our shoes might think this is terrible, but try to understand what the reality of EDS looks like for us and many others.
Years ago, we would have considered a trip of this nature and after weighing all the walking, drive time in the car, and effort it would take for her to socialize, we would likely have just stayed put within our four walls. She is older now, twenty-two actually. She has the capacity to understand all the activities that we intended to participate in and the fact that she would not have the freedom there to rest as much as she needed. It was her conclusion that our family would be much more limited in our activity if she went along with us. We considered taking her wheelchair so we could go places, but the wheelchair does not negate her fatigue and pain; it was almost too much for her to imagine trying to cope when she knew how she would really be feeling on the inside. A person with EDS is constantly weighing the physical and emotional cost of activity that most people simply take for granted. Furthermore, a choice to not participate in an activity is NOT a choice to give up! It's simply real life with EDS.
See, Abby has learned it’s not always worth it to do everything that everyone else does. She actually truly enjoyed the peace and quiet at home while we were away. I realized that I, too, have learned to live within a new reality and accept what that looks like. While it was hard to leave her home alone, I knew she could handle it and that it was the right choice for her. I was able to take control of my thoughts and not constantly fixate on envisioning her at home all by herself; I found myself simply enjoying the moment. I also do NOT sleep well away from my own bed, so each day that went by, I felt myself becoming more and more tired and realized with Abby’s chronic fatigue, there would be no way she could have kept up with this pace. We drove the entire twelve hours home today, stopping every few hours to stretch our legs. As the pain in my back, legs, and neck increased each hour (I have hypermobility also), I was thankful that she had made a mindful choice to minimize her pain by staying home. I would bounce back the following day, but her pain would increase not only during the car ride, but also over many days even after the trip.
EDS Mama, you may feel very limited as to the activities your family enjoys together. You cannot worry what others think about your family's decisions. Sometimes you will decide to just stay home and be together. Other times, you will venture out, with or without your chronically ill child. I know how hard it is to leave that child behind. Perhaps before you know it, your child will be making those decisions on her own. You might even realize you have gained a settled peace about it all.