Charlotte Rose is the adorable and indomitable little peanut plastered all over these pages. She is both kind and fierce, sweet and intense. I don't think we ever intended to use her full name, but she was born quiet and with such a commanding presence, she required both. At present, she rarely finds the time for silence, she is still remarkably insightful, funny, and thoughtful.
At nearly three she wants to be a doctor or a vet. She loves her stethoscope and always leaves medical appointments laden with medical supplies gifted by her amazing nurses. The first to declare that she is alright after a fall, she is also the first to notice signs of pain in others and to offer comfort and sympathy - or a hello kitty band-aid, which is really just as good.
Charlotte Rose was recently diagnosed with a rare and severe form of muscular dystrophy called Limb Girdle type 2C. Because the disease is progressive, right now she looks and behaves almost normally. But her mobility is temporary, and by ten, she will likely lose the ability to walk. On paper, MD is a "painless" disease, though anyone who lives with it will tell you the opposite. It is painful and fatiguing. I often see discomfort in her face after walking a long distance. I am in awe of her strength and resilience; she smiles through procedures and touches my face and tells me she's ok.
"She's still Charlotte, and Charlotte is perfect", her pediatrician told us. We were meeting with him when we got the call that they had a diagnosis. He was trying to calm me down, but his words have been really instructional. It's easy to see all of the bad in a diagnosis, especially one as scary as muscular dystrophy, but it's hard to see what you still have. It's nearly impossible to separate what is paralyzing from what is, and always has been, an infinite source of light.
"She's still Charlotte" is more than an awareness that she is the same person. That she is still funny, and bright, and bossy. The words are also a reminder to never forget where her light originates. She is the source of her own light. Miraculously and thankfully, she doesn't need anyone else to be all of the things she is; she is independently illuminated. She doesn't need me to express it, but she needs me to amplify it.
So that's what I do. And that's how we manifest resilience. We make finding joy the most seriousness of business. We make more cupcakes and we always use sprinkles. We wear tutus in the mud and we don't care. We put glitter on as much as possible and instead of being frustrated when it ends up everywhere, we are happy that we made something else sparkle, too. We changed the way we look at our life. I thought it was my responsibility, as a parent, to raise an adult. I don't have that privilege anymore, but I do have is the brightest light I have ever known and she deserves every opportunity to let it shine.
The Kurt and Peter Foundation is the only charitable organization devoted solely to curing LGMD2C. They fund research that shows amazing promise. I hope you will consider a donation.