We live in a culture of noise. Everyone wants to talk, but it seems like only a few want to actually listen. I’ve learned so much from being a Duchenne parent. Many other Duchenne parents reach out to me, and I know that the most helpful thing I can do for them is to simply listen. I don’t tell them how to feel or give them unsolicited advice. I just make sure they don’t feel alone.
The doors opened, and we all went in and pressed the appropriate button. The doors closed, and he just stared at him. The old man shook his head and looked at me. With a thick heavy accent, he said, “too young.” I smiled awkwardly, unaware of what he meant. “Too young for a chair,” he said sadly. I nodded quietly, but when my eyes met his, he pointed at my son and asked, “What’s wrong with him?”
Our lives can feel isolating, exhausting, lonely, and misunderstood. We are allowed to power down and be still sometimes. Those days can actually let out deep emotions that we’ve pushed down, emotions that need to come out. After a good cry, a restful day, and a whole lot of grace, you’ll feel lighter and ready to face life again.
I’m the mom you tell your friends about. When the topic of suffering comes up in conversation, I’m the one you talk about. It’s my story you tell, my prayer request you share, and my circumstances you speak about. I’m that mom whose shoes you would never want to walk in. I’m a mom that I never thought I’d be.
Empathy is powerful. Kindness is critical. When I can share my reality with someone and still feel loved, it’s comforting. When I feel even remotely understood, it makes such a difference in my life. I carry so much weight on my shoulders, and when someone cares enough to try to understand my world, it makes the load just a little lighter.
No parent should ever have to tell their child they have a degenerative disease. There is no parenting book in the world that will prepare a mother to tell her two sons they have Muscular Dystrophy. How do you tell your six and eight-year-old sons that their lives will never be the same again? There is just no possible way to prepare your heart for such a task, but after I got that dreaded call that’s exactly what I had to do.