2023 Goals...Blog More
January 4, 2023
2023 Goal….write more. I love writing, but I never make enough time for it. I’m not even sure I’m that good at it, I just know it’s therapeutic for me and often provides me and my family with support that I never know I even needed. I have a goal in 2023 to have a blog post at least once a month, so stay tuned!
So today, it is Wednesday night, the first Wednesday of 2023. We are almost 5 years into the diagnosis of Duchenne Muscular Dystrophy for both Caleb and Dunky. Here I sit at 9 pm in the Ronald McDonald House (RMH) across the street from Nationwide Children’s with Caleb sleeping, who is exhausted from the past few days, but also likely exhausted from just living with this disease.
Our flight plans were perfect, leave on Tuesday at 1 pm from Minneapolis, appts on Wednesday, leave on Thursday. But mother nature had other plans with inclement weather, so we changed flights to leave Monday night, only to be faced with delay after delay. We finally got to our hotel in Columbus at 3 am. I booked a hotel and arranged for a late check out so we could sleep and go swimming at the indoor pool before heading to the RMH. Caleb lasted 13 seconds in the pool because it was too cold for him. I’d like to think my ability to brush that off is due to my obsession with yoga, accompanied with parenting kids with special needs, cause deep down I wanted to force him to swim since that’s why we were there. Kudos to me.
Doctor appointments were hard. I wrote a 3-page paper and sent it ahead of time just to be able to document my thoughts related to Caleb and this disease. I did this so I didn’t have to continuously talk about his failing body in front of him and to avoid the tears that accompany those discussions. It discussed things like his increased struggles to get off the floor, his muscles that fatigue faster than I would ever imagine, the depression and anxiety that he expresses in his words and actions.
Caleb is 9, the age where you start to see disease progression. It used to be 7 or 8, but with steroids, it is more like 9 or 10. He’s also brilliant. I watched him look at the older kids in the lobby of the waiting room and could see the anxiety and wonder on his face if that is what is to come. Yes buddy, that is what is to come. But instead, I flipped that stroller around and engaged him in the Paw Patrol show that was playing on the other side of the lobby. We don’t try to hide anything from our boys, but sometimes, it’s even too much for me.
This visit I strategically needed a coffee while Caleb did his PT, which involves the Northstar Ambulation Assessment. I typically accompany him and help him along, but I knew his physical decline would be too much for me to watch. It’s so sad to see a 9-year-old be asked to jump or take a step, and they aren’t able to do that. Thankfully, Nationwide has the best clinical team that they jumped in and took Caleb without missing a beat.
It was just two weeks ago that I was doing this same thing with Dunky. Travel, flights, overnights and days of doctor appointments. I still find it hard to believe that both my kids have a terminal disease that require so much clinical interventions. It’s already exhausting and it’s just the beginning.
In a nutshell, this disease is the worst. It can get the best of you if you let it, but I continuously do things to ensure it does not, because life is too short for a typical person, and it’s certainly too short for a little boy with Duchenne. So we saddle up, make the best of every day, travel, smile, create memories, spend too much money on ridiculous things that make them happy, advocate, ensure they have the best clinical care and put our trust in God that their lives will be filled, joyous and plentiful while they are here on Earth.
Thank you to all that are on this journey with us, you know who you are! It’s all of you that ask how you can help, it’s all of you that show up at my doorstep with treats for the boys or coffee for us, it’s all of you that continuously donate to Kasners Kick Duchenne or the Flanigan Lab that fuels the Duchenne research, it’s all of you that invite us out, knowing it may not be what you expected, it’s all of you that join me in the Columbus marathon, it’s all of you that rode the KKD Gravel and can’t wait to do it again, and much more. We are forever grateful.
Love, the Kasner Family
1/4/23
