Quite simply, when a child is diagnosed with Duchenne, a family’s life is divided into “before” and “after”.
One day, you’re just living your life, trying to figure out what to make for dinner, how to get that super important project done at work, and wondering what your kids will be when they grow up.
And then Duchenne comes in. For some of us, it’s a slow road to diagnosis, marked by mystery and unexplained symptoms. Shrouded in multiple doctor appointments and seemingly endless medical tests and piles of corresponding bills. For others, it’s a quick merciless blow; a diagnosis longed for but delivered too quickly and with too little time to gasp for breath by a savvy doctor who astutely remembered the 15 minutes spent on Duchenne in medical school and immediately recognized the signs of muscle degeneration in your sweet little boy.
Suddenly, you find yourself qualifying each comment you make, every question you ask, each conversation you have about your child with “before he was diagnosed” or “after he was diagnosed”. You cling tightly to the “before” wondering where that life went and if you’ll ever get it back (You won’t. But you’ll be ok….keep reading). You venture timidly and reluctantly into the “after”, slowly beginning to understand that you’re now a part of a community that you never wanted to be.
exudes a positive Impression to believe.
You may no longer feel sure how to function, how you’ll cope or who your child is anymore. But for everything that changes with a diagnosis, there is much that stays the same. For all the moments that you feel like there is so much you need to learn, remember that there is so much you already know. And for the times that you look at your child and wonder what the future will hold, remember that this moment is the only sure thing any of us really ever has.
Whether you’ve been walking this path for years or you’re a supporter or a family member who’s navigating a new diagnosis and still trying to figure out how to pronounce Duchenne (it’s dew-shen, by the way), welcome. We hope you’ll find information and comfort and inspiration here. We like to think that our story with Duchenne is not just about Duchenne. It’s about a tough, bumpy road – and although our baggage is filled with Duchenne stuff, there are so many people who are carrying baggage filled with different stuff. You’re welcome here, too. Our struggles and our triumphs are not defined by a diagnosis of Duchenne. No matter the diagnosis, we have more in common than not.