I just returned from a meeting in Europe and one of the best things about these meetings is hearing stories of families, listening to experiences, and learning about those special times when a child’s insight makes us stop in our tracks. It is not about criticism or what is wrong, right, or in between. It is just about those times when we find our hearts’ making a recording that we will remember all the days of our life.
One mom talked about all the things she was doing for her son. She described a pretty time consuming schedule that included supplements, stretching exercises, aqua therapy, as well as a very strict diet. It was pretty amazing really and I had the sense that she had achieved the perfect “10” as a mom, someone we would all look up to and wonder just how she fits everything into a 24-hour period or if she found some magic to stretch the few hours in a day. All of a sudden in the middle of her story, she had tears in her eyes as she talked about one particular evening when her son was grumpy as she started the stretching exercises. He had had a full day. As she started his stretches, he started crying. She asked if the stretch was painful. He said ‘no.’ Like all of us, she probed, asking if something went wrong at school, if his stomach was upset, if he was in pain, looking for something, anything to understand the tears. We have a natural tendency to try to ‘fix’ everything. He simply said he did not want to do the stretching tonight. With that, her fear increased and she tried to sooth him, tell him how important this was for his muscles, how much she was doing to help him. And in that very simple way that children have, he said, “You are not doing this for me, I am doing this for you.” She felt her heart breaking.
I also spoke with a father whose son is now in college. He discussed his son’s detailed agenda to include a variety of interventions squeezed in between college classes and studies. I asked about friends, about movies, about music, about laughter. This father said all that would come later. I wondered when ‘later’ was planned. This father was so worried that if something interrupted their rigid schedule, his son would lose function. He felt this regimen was essential to maintain the life his son had, the things his son was able to do at this very moment. One glitch, one change, and it would fall apart.
I remember hanging on for dear life, thinking that if I changed one thing, if I took time to breathe, time off, time to enjoy something or some activity from my previous life, things would fall apart. It felt like my life was hanging on a thread. I remember hanging everything on the future. I started sentences with ‘when this happens,’ thinking that a certain clinical trial would yield amazing results and then we would catch up on whatever it was that we missed.
Every once in a while, I think it is good to take a step back and remember, the life we are living is not a dress rehearsal, it is the real deal. There are no ‘do overs’ and no way to recover time lost. So, while we are all aggressively pursuing what we think is the best route for our sons and daughters, it is important to listen to their voice, to ensure the discipline of care includes their perspective and their opinions.
And as you make up the schedule, please include 30 minutes of laughter. It should be considered a therapeutic intervention!