About six months ago, I told Steve that I wanted to share Julianna with the world.
I had a hard time articulating my reasons and I didn’t have a plan. We are cautious parents and introverted by nature, so I questioned the wisdom of it all. To my surprise, Steve said “Why not?”
“Julianna is a bright light.” he said. “Maybe she has something to teach the world. “
A few weeks later, Julianna and I had a conversation about heaven. Its power gave me courage, and I wrote my first piece for the Mighty in May. We started planning a blog. I wanted to document more aspects of our story: the medical stuff, J’s fabulousness, her profound and funny words. I hoped that my friends and family, at least, would read it.
About six weeks later, I got a call from CNN — and this is probably why you are reading this post.
We had no idea it would get this big. Media outlets all over the world told our story – our long, complicated story – in a few paragraphs and asked people to weigh in on the “controversy.” Other groups started using Julianna (and her photos) as a symbol for things that have nothing to do with our story.
It was a bit overwhelming at first, and I felt like retreating. I shared my concerns with Steve, who was (as usual) calm and steady. Maybe our story went big for a reason. Maybe it will help other families who have loved ones with a terminal illness. Hopefully it will start thoughtful conversations about what is important and how we want to live out our final months – or decades. Perhaps there will be more awareness about Julianna’s devastating disease and we will get closer to a world without CMT.
So we are back to my original intent: let me introduce you to our Julianna.
The headlines call her the “Dying Girl.” We think she is the “Truly Living Girl.” If you want to know what it means to truly live, look into her eyes and read my stories. You will find no better teacher than this girl.
Last night, I had to tell her that she couldn’t go trick or treating. It was cold and rainy, and we just couldn’t risk it. I told her I was so sorry, and that she could still dress up and trick or treat in the house. For about five seconds, her beautiful eyes welled up with tears, and then it was done. She asked us to dress her up in her cowgirl costume, and we wheeled her around from room to room so that she could collect treats. She loved it.
As I tucked her in, I told her I was sorry about not being able to go out for Halloween. I knew she was really disappointed. She dismissed, saying “It’s OK. I was just pretending.” And that was it.
A lot of people tell us that they don’t know how we do it. The only answer I can give is that we follow her lead. If J doesn’t feel sorry for herself for missing out on Halloween, how can I?
Our Julianna lives joyfully and loves generously. She is a bright light, a gift from God.
PS — We are overwhelmed and humbled by the hundreds of beautiful messages sent in by those who are touched by Julianna and our story. Your words, good wishes and prayers strengthen us. We cannot thank you enough.