Hello I am Carmella McGee, I’m 14 years old. My brother/partner in crime, Louie, is 17. We are members at Gloria Dei Lutheran Church in St. Paul. We’ve been navigating the world of black and light together for the past 12 years. When Louie was 5, he was diagnosed with a rare retinal disease called Stargardt. It’s a regressive eye disease that steadily (and unpredictably) steals his vision from the center outward. Louie’s vision is currently somewhere around 10% of how you or I see but his Vision has exceeded normal boundaries.
Blindness is the third most feared physical condition after only Cancer and AID’s. I get it – I was afraid of the dark when I was little too. But not many know that much about blindness. The truth is that it’s different for everyone. About 85% of people with blindness have some vision, and beyond that, they are all still living life.
Last year Louie started Louie’s Vision, a non-profit to help kids with blindness focus on possibility rather than disability. Our work at Louie’s Vision centers on Awareness, Confidence and Accessibility. As a part of our awareness initiative, Louie and I were fortunate to be asked by Bishop Patricia Lull to speak to the Synod Assembly a couple of weeks ago. In fact, it’s been a year full of speaking to groups of kids and adults about the truths, myths and realities of blindness. Additionally, in the areas of confidence and accessibility we’ve held a series of event’s for kids with blindness including golf with an LPGA Pro, a hike in the woods with a Naturalist, a Blind Ski Day at Afton Alps and most recently an Adaptive Yoga class with the nations’ leading Adaptive Yoga Instructor. Because each kid comes with their own set of possibilities and their own definition of adventure, we aim to offer a variety of options.
A lot of people think we are this crazy sibling duo that does it all, but we are really just normal kids. For example, a couple of years back, we got our first tandem bike. It’s great because it allows us to get out and explore on a bike just like everyone else our age. But we ran into a problem – I was too short to pilot from the front. We were not about to let that get in the way of our next adventure, so Louie hopped on the front and ducked down so I could see over him and give directions. And it worked – we made it successfully around the block a few times. We even decided to ramp up the adventure and ‘thread the needle’ between a neighbors garage and a telephone pole. We almost made it, but my handlebars got hung up and we both went flying – all as our mom came running out to see what was going on. We often forget that one of us is blind because it doesn’t have to change anything.
One of the most important things I learned in church was to take the things you are given and make the best out of them. If you cannot do that alone,
find others to support you and cheer for you along the way. That is why we started Louie’s Vision. We want to be there for those who need a cheerleader.
Whether you are blind, sighted, struggling, or thriving, God is always there to guide you. Find God in those around you and in the beautiful little things we take so much advantage of.
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.