Because no one else has...

Hi! I'm Connie. If you don't know me yet, I am a writer, a teacher, a mentor, a missionary, a sister, and a daughter. I like to sing with the radio, read stories out loud, doodle and sketch, color (yes, with crayons), watch movies, lay on the beach, eat ice cream, take long roadtrips, and build authentic community. I was diagnosed at 18 months old with a neuromuscular disease called Spinal Muscular Atrophy, Type 2. I am now 31 years old. I'm realizing more and more that 31 years is a long time to truly live with SMA, Type 2.

By "truly live" I mean not just surviving, but using my time well - investing in things that matter, loving people deeply, taking risks, and seeking out beauty and joy. I've hit some difficult times that have made me wonder what the point is of holding on to this life... but when I ask God this question, he answers me by reminding me of what fills my days and keeps my blood pumping - Hope. The kind you can't explain.

People have told me for years that I should write down "my story," (meaning about my disability), but I felt like sitting lopsided in a wheelchair was obvious enough and I wanted desperately for people to see and know me past my disability... I wanted them to not even see my wheelchair, to forget I couldn't climb stairs or mountains, to enjoy helping me with things rather than feel obligation. And to an extent I think I've been able to do that. But I've grown to realize it is not good to pretend that I don't have a disability or to minimize it with those around me. It isn't just a footnote in my book, or a prop on the scene of my life, but it is something that greatly shapes who I am and how I live and view the world. It's a gift God gave me, and it has a purpose.

I decided today to start this blog, because no one else has done it, as far as I can tell. There are blogs informing and updating about the scientific advances in research, promoting a cure. There are blogs about political progress and social advocacy for children and families. There are blogs by parents who are learning how to care for their newly diagnosed babies. All of these are good. But I can't find anything that an actual person with SMA has written about how their life is affected by this disability. So here it goes... I apologize if there are sometimes dark or sad things that I post. But I feel like, if they are real then they need to be expressed, so that when there is light and joy, they really are beautiful.