Dear AI generator, although your facts were mostly accurate and your detail was appropriate, you didn't quite capture what I wanted to say...
So, I thought about what I might write if I were to use the same keywords entered into the AI generator here earlier this week: Duchenne, anticipatory grief, hope...
The vocabulary I have gained over these last 11 years surrounding Duchenne Muscular Dystrophy is immense, worthy of a whole blog post in and of itself: exons, Gower's maneuver, dystrophinopathy, pseudohypertrophy, 6 minute walk test (6MWT), creatine kinase test, and the list could go on and on and on.
But Duchenne, like any diagnosis, isn't about those words and the seemingly everpresent impersonal clinical stuff. Truthfully, you can't get away from the medical side of things: medications to take, clinical trials to consider, multiple physical therapy appointments every single week, hospital visits to check current status, complete testing, and compare abilities to the previous visit, always waiting and watching for the inevitable decline. However, we've found it's more importantly about the people, and the connections, and the experiences. At least that's how we've chosen to see it.
We've met incredibly wonderful families loving their sons as best they can through immense struggle and sadness. It's a huge comfort to know people facing the same difficulties, even though you wish no one had to face anything of the sort. There's a beautiful strength experienced through caregiving and decision making, both of which become more heavy as time goes on. We are surrounding by a community of people who show love, care, and concern in many ways - often just through their friendship.
So we're not to the really hard stuff yet, but when you or a loved one are handed the diagnosis of a progressive disease that ends in death at an unimaginably young age (in the case of Duchenne, an average of 27 years), what do you do?
For us, there's a heavy focus on education and advocacy. We've learned what is possible at this point and what is not. We know what drugs in the pipeline could maybe help our sons and then have to consider which side effects are or are not worth the potential benefit. We keep as up-to-date on research as possible and we seek out advice from other parents who have been down this road ahead of us for information, advice, and tips and tricks for daily life.
Right now, fatigue is our biggest barrier. Josiah will still go, go, go until we can visibly see he's overdone it, resulting in a waddling gait and some stiffness in his legs. Samuel understands his own body so much more completely and will take breaks and be very clear that he's "done." When we're out, there's a lot of people-watching and just sitting and observing the world (like in the picture above...Josiah went to play a round of blacklight minigolf with Gabriel, but Samuel knew it would be tiring, so he went to a coffee shop with me. This picture was taken right after that, when Josiah and Gabriel rode a giant ferris wheel at the beach. Samuel could have, but chose not to, so we sat on the boardwalk and watched people walking by and waved to his brothers as they went around and around.) When at home, we tend to gravitate toward board or card games, lots of LEGO play, movie watching, and cuddles with one of the cats. This is certainly different in many ways from most boys at 9 and 11 years old.
Through this journey with my two little guys who don't seem quite so little anymore, there are certainly moments which give me pause. Josiah will say something about the kind of car he wants to drive when he grows up (Lamborghini's are currently his favorite) and I'm careful to respond in a neutral or positive way ("Wow, buddy, that's a LOT of money. How are you gonna be able to afford it?" or "How cool! What color would you want it to be?"). He KNOWS he's going to end up fully wheelchair bound and he KNOWS his life won't look like most other young men, but I'm not going to constantly remind him of that reality and squash his starry-eyed dreams.
On our recent trip to Myrtle Beach (could that really have been JUST five weeks ago?), Samuel (who is much more pragmatic than Josiah about things in general) sighed heavily one afternoon while sitting in the beach chair low in the sand. He tends to sigh a lot; to complain or out of frustration, but also when in a pure state of contentment. I couldn't interpret the meaning behind this one, so I asked. His matter-of-fact response? "Well, I guess this will be our last trip to the beach."
Wow.
I dug a little deeper and he explained that even though we parked right near the entry point and had found an "accessible" beach (meaning there was no set of stairs to climb over a small dune), he understood how difficult it was for him to make it the 50 feet beyond the parking area, hanging on to my arm for support. Sand walking is difficult, and it wore him out.
He knows the progressive nature of Duchenne, and he remembers our last trip to the beach two years ago. I presume he FEELS the difference between the two experiences. He knows that two years from now, things will be even harder. Perhaps he'll be in a wheelchair full time by then, who knows. I'm so relieved that he truly takes so much of this in stride. For the most part, he's accepted that his life is, and will continue to be, different from others.
I was able to share with him that many beaches (areas of Myrtle Beach included) have beach wheelchairs you can borrow, often just having to call ahead to reserve them - they'll roll right out onto the sand and into the water. Other places have a beach mat that rolls out and a regular wheelchair can drive out a bit onto the sand. He seemed happy that I'd already researched this kind of stuff and had an answer ready for him. He was glad to know we could come back again, because he really loves the feel of the sun on his face and the sound of the waves (just like his mama on both of those counts).
But that leads me to anticipatory grief - that feeling of grief before an impending loss. With Duchenne Muscular Dystrophy, the losses come over time; the labored climb up a set of stairs, the inability to get up off of the floor without help, the eventual requirement for help with bathing, toileting, eating, everything. Duchenne robs so much from these boys and young men, and we know it's coming. It's just a matter of when.
Anticipatory grief is certainly not unique to Duchenne, but maybe the period of time we experience it lasts a bit longer than for other circumstances - it's all drawn out a bit more? From the moment of diagnosis (for us, when we learned that Samuel even existed at 7 weeks old, and at around 2 months old for Josiah after receiving genetic testing results) there's an ongoing awareness of what they can do now, what is becoming difficult, and what will soon be taken away. The timeline runs a bit differently for each one affected, but it is inevitable.
Yes, sometimes there's a heaviness, how could there not be? But more often than not, there's a quiet confidence that we're doing everything we can to have supports in place, offer alternatives for activities and ways of getting things done, and to bring as many experiences and opportunities as we can into our boys' lives.
It would feel oppressively heavy to live in the weight of the sadness of "what's next" or waiting for the next bit of bad news about a decline. Instead, we've chosen to focus on relationships and experiences. We live solidly in our faith - not really hoping for a cure (if there ever is a cure for Duchenne, I firmly believe it is way down the road), but living in that hope and promise of our salvation. Samuel and Josiah both know that they are beloved children of God, and they have a family who will continue to do everything possible to give them a comfortable life full of mini-adventures and a lot of love.
I could talk for days about my kids or my feelings about any number of topics. I'm in my own head quite a bit about things, so I've had plenty of time to formulate opinions about many things. Feel free to ask me, but that will be a conversation for another day :)
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