It was today. I knew it was coming, but had no way of knowing this would be that day.
Backstory: We knew the diagnosis ten years ago when we adopted our son…Duchenne Muscular Dystrophy (DMD). He was 7 weeks old, and due to biology and family history of Duchenne, genetic testing had already been completed. Two years later, we adopted his little brother, knowing the likelihood (50% chance) of him having the same diagnosis. After genetic testing was completed, we received confirmation that he also has Duchenne.
The formal definition of DMD is typically something like: an inherited disorder with progressive muscle weakness. Truthfully, that definition is a bit too innocuous. Some people say “life-limiting.” That also seems super sanitized.
The reality of it is Duchenne is a beast. It’s a progressive, terminal, muscle-wasting disease. There is no cure for Duchenne and there are very few treatments (many that do exist are only appropriate for a small subset of those affected). The average lifespan is currently around 27 years old.
Oh, absolutely, there is research happening, medications “in the pipeline,” and hope for the future. Medical care over the last 30 years has improved that average age by several years. However, progress is slow, clinical trials are burdensome, and it takes researchers an incredible amount of money in order to continue to move forward.
Two of my sons have a terminal diagnosis.
There. I said it.
They are both missing three little exons—puzzle pieces in the dystrophin gene. That lack of dystrophin protein (the “glue” that helps hold the structure of muscles together) means that over time they will become weaker and weaker. Eventually, they won’t be able to walk. Eventually, they won’t be able to feed themselves. Eventually, they will need breathing support. Eventually, complications from this diagnosis will bring them to death, much earlier than any of us would like to really think about.
Did reading that make you uncomfortable?
Those are hard, sad words for people to hear. Sometimes, those are hard, sad words for us to live. Right now, my boys are young and full of life. It can be difficult to imagine the long-term reality of a diagnosis like theirs, but we see those physical shifts and subtle changes over months and years.
So, how do we navigate that reality in the midst of day-to-day life with little boys?
From the beginning, we’ve been open and honest with our sons about the fact they are adopted AND about their diagnosis. We aim for no secrets in our household. We broach topics as best we can in an age-appropriate manner. When the boys ask questions, we give them honest, simple answers. All of this becomes a part of our family’s regular vocabulary.
“Gabriel and Kaleigh were in your tummy, but I was in another lady’s tummy?” said Samuel at 3 years old.
“Yes, that’s right. When you were born, your birthmother knew she wasn’t going to be able to take care of you, so she wanted to find a family to love you and have you be their son, and that family is us,” I replied.
“Someday we’re both going to use a wheelchair?” asked Josiah at 6 years old.
“Young men with Duchenne usually are in a wheelchair. We don’t know when that will happen for you, but we hope to keep you healthy and active as long as we possibly can. That’s why we talk about eating good food and why you go to physical therapy to work on balance and stretching. Those things are all good for you, and hopefully, you’ll be able to walk as long as possible.”
There’s generally an ease to these conversations. No one is upset or scared. We state facts in a calm way and answer follow-up questions as they’re asked. The boys truly seem to have largely taken all of it in stride up to this point.
It often appears to “soften the blow” for Josiah, who is two years younger, as he observes Samuel’s typically calm and level-headed response to changes in his abilities or additional medical interventions/medications as things progress. There’s no panic, no over-the-top reaction, just an acceptance and a peace about things like participation in surveys and studies, blood draws, nighttime AFOs (ankle-foot orthoses), physical therapy, extra doctors’ appointments, travel and hospital visits for a clinical trial, and the addition of a medical scooter (and most recently, a couple of simple power chairs) into the mix to relieve the physical burden of long days with lots of activity.
However, let’s go back to that opening sentence, “It was today.”
What happened today?
Josiah (now 8) ran into the bedroom where I was working at my makeshift desk. His eyes were huge and he was talking fast.
“Mommy, Samuel’s crying, and I’m sorry.”
As any parent knows, that introduction begs the question,”What did you do?”
He answered, “I looked up on my iPad ‘what are the chances of dying with Duchenne.’ It told me ‘27 years old,’ and I told Samuel.”
Oh boy. There it is, and here we go…today is the day. Today my young sons found out they will likely die much younger than any of the rest of us.
So, Josiah and I went to find Samuel (now 10). He was at the dining room table with his head down, crying, repeating over and over, “I don’t want to die at 20. I don’t want to die at 20.”
“Hey buddy, what’s going on?” (Knowing full well what was going on.)
He looked up with such sadness in his eye, “I don’t want to die young.”
The look on his face broke me a little. The knowledge that this last bit of “innocence” they have about their diagnosis is gone gave me a momentary pause. This isn’t what childhood should be like, but it is their reality.
I took a deep breath and put my hand on his arm. “Samuel, let me clarify. Josiah said 27, not 20. Yes, that’s still a scary number, but listen – it’s an average. You remember what average means, yes?” He lifted his head and nodded.
“We know of men with Duchenne who are in their 40s. They’re working and living life and some of them are even married. Daddy and I do our best every day to make choices which will keep you healthy for as long as we can. You get good quality medical care with experts in Duchenne. Both you and Josiah are in a clinical trial, which we don’t believe will be a cure, but that medicine certainly looks like it might slow progression. Do you understand how all of these things make us hopeful for a longer life?”
He looked at me, wiped a tear, and said, “Yes.”
I continued. “None of us know when we will die. The sad reality is, there is sin in the world, and because of sin, there is death. You’ve learned that, right? People get cancer. Car accidents happen. None of us know when we will die, but I don’t say that to scare you. It’s just the truth of living as human beings. We don’t know when you’ll die, but what is the good news we know about death?”
“We’ll go to heaven,” he said.
Josiah piped up, “Yeah, if we die young, we get to see Jesus sooner.” Out of the mouths of babes, right?
I offered to sit with Samuel for a bit and hold him, but he wanted a moment in his room by himself. I gave him a hug and sent him on his way. He came back a few minutes later and said he was OK, and he isn’t scared, just a little sad for now.
On the surface, that maybe sounds a little flippant. He took the news in and was able to pretty quickly move on. Yes, death is a serious thing, but the trust and faith of my young sons brings me peace, because it seems they don’t FEAR death. None of us should. The fact is, we’re all terminal, right? Death is a part of life.
Like Duchenne, sin is a beast, filling our lives with sadness and anger and false hope in all the wrong things. Faith brings us to trust and true hope in the knowledge of salvation promised to us through Christ’s sacrifice.
Difficult diagnoses can bring fear and sadness and pain, but the hope we have in Christ brings a stillness and confidence, despite current concerns or what difficulties appear to lie ahead.
My family prays for the guidance and encouragement to be able to live each of the days we’ve been given together here on earth in as full and fun and love-filled ways as possible. Instead of dread and fear, we look forward with anticipation to the day’s activities or the next vacation planned. Instead of focusing on what we can’t do, we hope to find all the things we can. My husband and I continue to teach our children about the love of Jesus and the hope and promise we have through Christ for salvation and eternal life.
May God grant us peace in every circumstance.