Trigger Warning: Childhood Loss
Duchenne Muscular Dystrophy
When we first met, he casually mentioned his boys. Just slipped it in and kept talking. “Sorry,” I said, “do you have kids?” There was no mention of kids in his dating profile. His kids were never brought up in the numerous messages and voice memos we had shared. We talked about my child. He knew I had one son, but never did he share he had three.
I thought it was odd, but he explained that kids aren’t a part of the conversation until there is reason to believe it might continue. I agreed. In five years of dating, no one had met Owen, and I understood the desire to keep the kids out of it. So, we continued chatting, and one coffee turned into two years.
You don’t get to pick the conditions of the person you fall in love with. And if you choose to continue to love that person, you choose to love their conditions.
I remember the first time I came face to face with what choosing those conditions meant. We took time to introduce each other to the kids, but when we did, we went all in. The second time I met the boys, we flew to Florida for a Duchenne event. Talk about all in. Me, the BF, three kids, and his Ex all traveling together at 6 a.m.
The trip went well. It was a no-holds-barred experience of what it meant to be in this world of Duchenne and what it meant to be in this family. It was eye-opening, interesting, and exhausting. Everyone had their own agenda of what this trip meant. It was my first experience trying to navigate three boys. It was my first time interacting with his Ex. It was my first medical convention and my first Florida lighting storm that knocked out power (elevators and air conditioning) in our hotel for the entire night. I mean.. Florida. At least Floridaman didn’t get me.
After this weekend, my guess is most people would have said, “Thanks, no thanks.” The dynamic was tense. The boys were struggling with social/emotional relations and barely spoke outside of fighting with each other. The youngest is a runner and took off twice. The oldest was beginning to depend on a wheelchair to get around. The middle had just ended a year at school where he had been asked to learn from home until his emotions were in check.
The boys, now 8, 10, and 12, were diagnosed with Duchenne Muscular Dystrophy (DMD) at 1, 3 and 5. DMD is a muscle-wasting disease passed down through the mother’s genes. The muscles fail to repair and eventually stop working. It impacts everything: large muscle groups like walking, smaller muscle groups like hand dexterity (think not being able to feed yourself), GI Motility (digestion), lungs (full-time respirators), and heart failure. The disease impacts not only their physical mobility, but the extent to which it affects social/emotional behaviors is relatively unknown.
The best way I can describe it is with a video game analogy. You know, when you play a game, and your little person has a health bar, and when you run fast or battle in the game, the bar goes down. But you can do things like rest or heal to recharge your energy bar. Duchenne bars don’t recharge. When you use it up, it’s done. When the muscle has no more strength or energy, it is gone. There is no reset, no recharge, no repair.
Now, that is not a scientific explanation; those include a lot of big words I am still learning, but you get the gist. The muscle wears out and can’t come back. If you google it, it will tell you that life expectancy is 18. Some are more; some are less. It all depends on the type. Just like different types of cancer have different prognoses, this is the same: all Duchenne, but different levels of impact.
Before this weekend, these boys weren’t real to me.
They were like characters in a story. You know them, and you hear about them, but because I hadn’t hung out with them a lot, they weren’t real yet. Much like the velveteen rabbit, it takes love to make someone real in your life.
After the second full day of swimming, eventing, and managing the chaos of three boys with big emotions, they became real for me. Their laughter and interactions became real. Their desires and frustrations became real. Their personalities emerged, and they were no longer characters in my BF’s life story. They became a chapter in mine.
I locked myself in the bathroom and cried. Ugly cried.
I cried for how unfair it is for kids to deal with this. I cried that all three would have to part ways sooner rather than later. I cried for my partner and the weight of knowing you would bury your kids. I cried for why all three had it (it’s insanely rare and rarer for multiples in one family). The processing my BF had done years earlier when he got the news was now flying at me fast and furious while also on a sleep-deprived, high-stress family trip to Florida.
I cried. I reflected. I wiped my tears, and I said, “OK. I choose this assignment.” As it is with me, every time I find a condition I can’t change and didn’t choose, I ask to see the lesson. I ask to see why this came to me and what I can learn from it. I did the same with this.
At that moment, I didn’t know what the path would hold. I didn’t know the full extent of what I was saying yes to, but I knew I would do my best to show up for that assignment to the best of my abilities. I would choose to co-create with these littles and let go of expectations of what stepparenting might look like in this relationship.
And without a doubt, it has been the most challenging and most rewarding adventure. There are more adventure stories to tell, but today, I wanted to thank these three for opening my eyes and challenging me. As someone who loves to work on mindset and behaviors, these three have been almost instant examples of the work that can be done when you are seen and valued. I have seen them transform before me and choose me in their own time. I wish they chose to tickle my toes a little less, but I’ll take it.
Dating after divorce is hard. Dating with kids is harder. Dating with kids and terminal diseases is otherworldly.
These three have taught me how to let go of expectations, try new approaches, and, most importantly, the magic that happens when you truly see someone for who they are.
So hug your littles, call someone you love, be present, and show the F up for life’s assignments. I swear, sometimes, the hardest chapter in your life becomes the most rewarding.
The eldest’s mobility power bar is just about up. He tries hard to keep moving as long as he can, but this summer, he could no longer stand long enough to brush his teeth. This means the need to transport a full powerchair is here.
As an unusual case of DMD, the boys were awarded a full wheelchair van (think six-figure investment) through fundraising and donations.
And if you are divorced, you know there are things you need multiples of. This van is only available to the boys at their mom’s, and my partner has a GoFundMe page to help him raise the funds for the same investment. I’ve included the link to donate, and thank you in advance if you can contribute.
#WDAD2023 #Duchenne #DMD