A quick update from last month. JB and his friends did a great job in Zoomsical. Thanks to all that made that happen! My plan for this month’s post was to bring you a new voice. But then something happened the other day that had me thinking back to what I wrote about the slow burn that I wanted to share. I promise to bring you a new voice next month, but, for now you will have to deal with me again.
As you know, I equate having someone with Duchenne in your life to a “slow burn”. I talked about how Duchenne is just a grind, a steady stream of loss of muscle function, appointments, medication, and more.
Something I did not mention that adds to this slow burn is the unexpected strong fires that shoot through you. They happen when you are trying to quietly live your life. They are short strong fires that fizzle relatively quickly but absolutely add to that ever present slow burn.
Some of these strong short fires come from within you and some from outside sources. There has been a fair amount of activity recently that would fall into the category of fires from the outside affecting my feelings about JB and Duchenne. But, the one I am going to share is one that came from within me. And like they so often do, it came with no warning.
As one manages day-to-day life caring for someone with a condition like Duchenne, there are times that it feels as though you have forgotten why you are doing all the things you are doing. Forget? You may find that impossible to believe. But it is true. You know your child needs so much including therapies, assistance bathing, a hospital bed, an IEP, a BiPAP, and more. But there are moments, sometimes even a whole glorious day when you do not process the reason why they need all of that. You just do it, you are on autopilot.
But then there you are, minding your own business of flying a plane (you may as well be since you are juggling so many things) and you are stopped, a fire has started.
Last Monday I had purposefully made no plans while the kids were at school. I was going to get the house together, work, and enjoy a peaceful house. I had no plans to meet a friend for a walk. No calls at a specific time. I just had 6 hours to myself. As soon as I got home from school drop off I felt off.
As I have also talked about in this blog, this sensation is a feeling of unbalance. I felt antsy. I felt like I was crawling out of my skin. I double checked the latte I just picked up at Starbucks and it was the same one I always get, no extra caffeine there.
I started picking up the house. I made it look like the weekend hadn’t happened. All the kids’ bags and activities were put away. Laundry and dishes started. I sat down to work but couldn’t concentrate so moved to cooking. I made soup with leftovers and prepped dinner. Dinner, per JB’s request that morning, was chicken parmesan. Yes, he thinks I operate like a restaurant and you put your order in. Since I did have the time that day I agreed. After cooking I still felt uneasy and agitated. I then moved to my next idea to get rid of being unsettled, working out.
That day I decided on a 60 min Peloton ride with one of my favorite instructors (yes, I have one and yes, I love it). Quick shout out to Peloton, their Comeback Program, and my friend who helped me get a free bike!
The goal of the ride was to get rid of this weird feeling I had. That is not what happened. I started the ride and tried to fully immerse myself in it, but I always have a hard time doing that. I am thinking of a million different things. I end up adding stuff to my list on my phone or texting someone. So my head is spinning (see what I did there), but just the normal thinking about what errands I need to do, what kid needs what done etc. Then right around the midway point of the ride I start crying.
Yep, crying, a middle aged peloton rider in the middle of her bedroom crying listening to Miley Cyrus sing “The Climb”. At least it is a somewhat moving song but certainly not worth crying over. It took me by surprise, why the hell was I crying? Then I realized...I am crying because JB has Duchenne, because his life is hard, because his life is going to get harder, because it impacts all of our lives, because I am tired, because I am unsure if I can keep doing this everyday. Just because.
I cried through a song or two as I pedaled. By the time Starships by Nicki Minaj came on near the end I was feeling better. I mean, I cannot hear that song and not smile thinking about Pitch Perfect. I followed the class with a quick 10 min ride with another favorite instructor when I saw his ride had an old Whitney Houston song on it. He adores Whitney and I love hearing him talk about it with excitement.
So, I got through the workout. I had gotten rid of the antsy feeling but I was now left for the day with what was really bothering me, Duchenne. It just popped up out of nowhere. A fire that was strong and now I had to deal with it. There are sometimes easy fixes to deal with those fires. For me that is usually being busy, but as I said I had nothing to do for hours. I could meet a friend and get distracted but there was the chance that I wouldn’t be able to listen to other’s challenges without becoming annoyed. That could push me further down the hole.
I decided I was going to just sit with the sadness a bit for the day. Not a climb into bed all day, call someone to pick up the kids kind of sadness day (those have happened), but a day to just acknowledge the sadness. To throw away the to do list. To not finish the laundry or dishes. To take the dog for a walk while listening to a funny podcast (a little not in season but check out It’s A Wonderful Lie). To feed the kids early and to sit on the couch with a glass of wine watching Bravo. To ask for my daughter to put JB to bed. To tell a friend that I am sad. To tell a DMD mom friend you are irate at DMD today. To eat cheese PopCorners. To cry. Just, to be sad.
The next morning I woke up ready for another day. Although my daughter never agrees with my timing in the morning (she thinks we are always going to be late), I got everyone where they needed to be with plenty of time. I was ready to put the sadness away. I am glad I had plans that next day. I was ready for distractions and ready to get that to do list done.
But, I did have a mild headache all day. I know it was from being dehydrated from crying, drinking wine and eating salty snacks but it made me think about the day before. How that day before, that small fire, that bad DMD day has a lasting effect. How it gets added to the whole picture of the slow burn.
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.