It is our family’s mantra. It is printed on the Team Peter bracelets we wear. But what does it look like to choose joy when things are not joyful, when things are hard, when joy is the farthest thing from your mind. I try to remind myself to choose joy in the middle of behavioral struggles with Peter.
Much of life is about choices. Our response to whatever is happening in front of us is a choice. Sometimes it is easy to choose joy, other times not so much. We are working hard to build a team around Peter that will help support him and us when he continues to decline. We still have hope that medical science will find a breakthrough, that the medication he is currently on will slow/pause the progression, that God will heal him. However, in the meantime in the day to day, we try to choose joy and do what we can to enjoy the present moment (unless it is an unpleasant moment and then we just try to get through it J ). Sometimes choosing joy looks like getting through the current moment and hoping and trusting in the promise that joy comes in the morning.
Some of the time Peter is himself, the kind but mischievous/smart and stubborn/funny and determined boy. I will be honest I struggle as I watch my boy slip away. He is still there and I cherish the moments that he is, when his smile reaches his eyes, when his laugh is the sound filling my ears, when he is jumping for joy, when he does the hard work and accomplishes a difficult task.
There are other times when it is clear that his Batten Disease is slowly eating away the cells that help make who he is. Times when he struggles to control his emotions, struggles to control his body, struggles to remember a concept, a word, a memory, the question he had, times that he just struggles. Sometimes we are able to easily distract or regulate him. Other times we are not. Sometimes when he digs in it is something insignificant that we can easily navigate around other times it is not. Sometimes it happens in the privacy of our home at time when we are not on a schedule; other times it happens when he wakes up in the early morning hours or in a public place or when we have somewhere to be.
As a part of Peter’s team we have video meetings with a Nationwide Children’s Psychologist. She is for Peter but she is meeting with us because we are the ones day to day trying to navigate Peter’s behavioral ups and downs. Today in our meeting she mentioned something a concept called dropping the rope. Basically when we find ourselves in a tug a war, dropping the rope and stepping away. There are times when choosing joy looks like dropping the rope and being thankful that Joe and I are in this together and can switch out when we need to. We also can choose joy because of the amazing support system in our families and Team Peter.
Thanks for helping us Choose Joy. Most of the time life is okay, it is manageable, there is laughter and joy. When it is not we have our faith, we have the ability to lean into God, each other, and our support system, which helps make the not okay, manageable.
