Duchenne IS our Lives
As much as we say we will not let Duchenne define us and our lives, I’m starting to think that is an unrealistic goal and moreover, almost a selfish goal. What if instead we embraced Duchenne for what it is and all that comes with it (which is more than you could ever imagine) and just lived in the present moment no matter what that brings.
Most think of Muscular Dystrophy and think of the muscles and if you know about Duchenne, you think of those young boys whose muscles start to deteriorate at such a young age. It is true, it’s a neuromuscular disease, that effects the muscles, that gives light to this disease from an outsider, especially as the disease progresses.
At Dunky’s age (4), it’s very few outsiders that would notice something isn’t quite right as his physical differences are nominal. He may run a bit different, he may slide down stairs on his butt (even in public), he may ask to be carried more often than normal and he may drop his drawers anywhere to go pee because he knows his body can’t make it to a bathroom. But, he “looks” like a typical 4-year-old. At Caleb’s age (6), most notice something is different, but they can’t quite tell what. He’s shorter than most (due to daily steroids), he uses a manual scooter to get around (like a razor), he can’t quite participate in activities like others can, he is self-conscious, he would prefer a pull-up vs underwear, he falls a lot, he can’t climb, he can’t navigate a staircase, he tires as if he has just ran a marathon ALL THE TIME. Think how hard that is for these kids, and then think how hard it is on those parents who must watch this disease progress and navigate the challenges with them.
Dan is out of town this weekend and while yesterday was a good day, I bet if any other parent or person was along side us for our day, they would not agree with that statement. It started at 6:08 am with Caleb calling for mommy and me negotiating with him to stay in bed until 6:30. Not unlike most kids, but the difference is, he needs our help to get out of bed. So, there is no such thing as helping yourself to a screen for a few minutes so mommy can sleep for a bit longer. There was constant bickering, screaming and meltdowns between Caleb and Dunky about nothing of importance. Literally about how many stuffed animals the other one has, what color their toothbrush was the night before, what level of some game they are on, what time it is, what day it is, what year it is, anything. I’m in tears and they are in tears. So, we write a schedule for the day and decide the goal of the day is to make mommy cry less.
We go about our day and it’s great, but it involves pulling over while in route to various activities to let one pee outside of the car and then 5 minutes later, doing the same for the other. You see stopping somewhere to go pee in a bathroom with two kids is hard enough with making them wait, getting them both in and out of a car seat and then fighting over who gets to use it first in what is typically just one stall. You add their disease in the mix, and it’s even harder. So, we stopped trying, we think we’re pretty good about being incognito, but care less about if someone sees us.
The boys watch their brother play hockey, they cheer on their brother while using me as a jungle gym, while other little kids have the time of their lives running up and down the stairs and around the rink meeting new friends that can do the same. Nope, not my kids.
We get home and the balmy weather (40 here in Minneapolis) excites Caleb and he wants to put his snow gear on and play outside. Dunky (who fears everything due to anxiety), doesn’t want to put any snow gear on, but wants to stay outside. They decide to take their scooters and go on a walk around the block. A hard task for boys with Duchenne, but I let them try to accomplish what they have their hearts set on doing. A quarter of the way through, I give my gloves to Dunky since he’s freezing. Half-way through, I have one rolling on the ground saying they can’t walk anymore and the other one begging for me to hold them. I have no gloves and two scooters, and I honestly stop and think, I’m not sure how we are going to get home. We decided to take turns. So, I carry one from Point A to Point B, go back and get the next kid and do the same, go back and get the scooters and do the same. At one point I suggested they just wait there on the corner of the street and I’ll run back and get the sled. Caleb was convinced someone would kidnap him so that didn’t fly. A part of me wanted to tell him, “just tell them you have Duchenne and while you are cute, you come with very high needs and super expensive medical bills”, but I refrained. We continued the Point A to Point B strategy all the way home. I saved my boys legs, and I got in a work-out.
Since diagnosis, the physical part of Duchenne has been the focus. Just understanding what it looks like, the limitations they have, what they can and can’t do and coming to terms with how awful this disease is to their physical bodies. But as of late, we’ve shifted into the cognitive part of Duchenne more.
We spent all day in clinical appointments at Nationwide Children’s a few weeks ago. Much of the day was talking about the effects that Duchenne has on the brain. I held strong for most of the day, but this is the part that brought me to tears. As if the physical aspects aren’t enough, pile on all the behavioral crap that comes with it. And what we talked about; I see in my kids. While Caleb holds more of the autism traits, Dunky holds more of the “everything else” traits. It’s bizarre and while I used to chalk it up to steroids and better parenting tactics, some of it is just realizing that this is who they are and their bodies inside are a complete disaster, including their brains.
I watch Caleb make rules, boss his brother around, do crazy math in his head, watch clocks to the second, recall memories with dates from years ago, place things in an exact order that only makes sense to him and cry like his feelings are crushed when something doesn’t go as planned or is out of order. I watch him fill with worry if someone comes over that may disrupt what he thinks should happen.
I watch Dunky cling on to me for life when walking into a new environment, explaining he’s scared to do what many kids would be excited to do, say zero (literally ZERO) words at school in nearly two years, turn from quiet to this uncontrollable high-pitch scream in a second, bang things against his head and kick and hit and scream as I try to hold him to calm him down from a tantrum.
We are blessed to have clinicians in this field that are helping us to understand that while some of this may be there age, some of this may be the steroids, much of this is due to the lack of dystrophin in the brain, as dystrophin is expresses in brain neurons. Historically, I would dismiss discussions about cognitive ability mostly because Caleb could nearly be a Mensa Member. He literally figured out a math pattern while playing a game faster than me yesterday, and my skill set is math.
So, what does this mean and what are we doing about it? It means that I used to think putting them in uncomfortable situations that make them act like that would be helpful so they would “get used to it”, but I’m realizing that isn’t a tactic that will be successful for them. It means play dates are harder and take so much out of the boys and me. It means I don’t get to see my friends as often and it means my dreams that my friends’ kids will be friends with my kids, may not come true.
I know that if our boys’ lives are such that they can’t move a muscle, we will help them and love them and be right by their side, but it’s also why I keep advocating for them and pushing for a cure. It’s unreal what just a bit of dystrophin could do for their bodies and their brains, such that their quality of life could be exponentially better. So, we pray for dystrophin and we pray for a world free from this awful disease, not just for Caleb and Dunky, but for all kiddos with Duchenne. Thanks to all of those who love and support us, it takes a village.