Each Christmas for the past five years I give my kids the same gift. I pick out a photo of them over the course of the year that I feel embodies them. I also write them a letter about what they have done over the last year and some hopes I have for them for the next year. Caroline’s was easy to find this Christmas. As soon as I saw the photo a couple months before I knew that was the one. JB’s on the other hand was not easy this year. The reason it was not easy was because I had so few photos of him!
I just got in from a walk up here at Loon. It is a beautiful winter day and I walked with just a sweatshirt on. I knew I was going to write something today and wanted to get my thoughts in order. As much as my thoughts are ever in order that is. I kept going back to why I didn’t have many photos of JB this past year. Yes there were less activities and gatherings this year, especially last spring. But, I realized that it was actually more something with me.
I have been increasingly looking to what the next step is instead of living in the moment. I didn’t take photos because I am not taking the time to enjoy what is happening. I think it is partially because of covid. Most of us fell into the thought process of when this is over, when the kids go back to school full time, when we have the vaccine, when our kids can get the vaccine, when we don’t have to wear masks and so on. I mean, how could we not wish these awful times behind us?
But, I have found myself in this mindset about other things in my life too. I am focusing more on getting to or through x,y, and z. I am thinking that when I get to or get through whatever it is, life will be easier. There is…when Caroline gets her license, when we get through JB’s musical, when I get through the holidays, and many more! Obviously this is not a good way to go through life but when you are living with someone who has a life limiting disease it is compounded.
It is compounded because living in the moment can be hard. The feelings I have when I quiet my brain are difficult for me at times. When I sat to watch JB in the musical a few weeks ago, I really focused on him. I watched as he did a wonderful job up on stage. I was proud of the work he had done and how he doesn’t let DMD get in the way of doing some of the things he likes to do. But I was also so sad, I was sad for him that he has so many more challenges than the other members of the cast. I was sad he can’t dance. I was sad that he couldn’t do a proper bow at the end of the show. I was sad that JB has Duchenne.
Although I am not much for new Years Resolutions, I will give myself a goal for 2022. It is to live more in the present, even with the difficult feelings it brings up…and to take more photos!
As for the photo I picked for JB this year, here it is. It is as he is leaving Powisset Farm for Reach The Peak. I realize, this photo is as much for me as it is for him. What I wrote to him I need to take to heart too: “You look like you do not have a care in the world when in fact you had just had a really rough day. This photo doesn’t show the struggle you had leading up to this moment. It doesn’t show the angst you had watching your sister put it all on the field to come out with a big loss. It doesn't show the days we spent juggling schedules to make that happen. What it does show is that you did it. That you were able to exhibit flexibility. It wasn’t always smooth but you did it! We made it to the top with your friends! ”
I need to take in the joy of the moment, like JB is here. Forget all the work it takes to get to something, forget about what has to be done next. I need to be proud and happy that I got to the moments. Because, that hike was a good moment and there are so many others that bring smiles like this to our faces.
Beth Harvey, JB's mom and executive director of JB's Keys to DMD, lives in Dover, MA with her 2 children. In addition to JB, she has a daughter Caroline. I try to keep a sense of humor and have fun, as I attempt to keep my head above water.