just a little story

I want to start this with a quick and simple story. It’s a story that has had a dramatic impact on my entire life. I think it’s important to pay attention to the seemingly quiet and little moments in our life. Sometimes these little moments will reverberate throughout our lives and the lives around us.

I was eleven months old when I was diagnosed with Spinal Muscular Atrophy type 1. My parents had been noticing that I wasn’t standing or doing other things that healthy babies my age were doing. The pediatrician sent us to a specialist, and they did a muscle biopsy and confirmed their suspicions. Dr. Silverstein told my parents that I had Werdnig Hoffman Disease (another name for SMA). She told my parents I wouldn’t live to be two years old. My Mom was holding me closely, and she told me she zoned everything out and prayed to God. She asked Him not to take me from her, and that she would raise me in His church and she would raise me to know Him. My parents were understandably heartbroken, but they never stopped loving me and they never stopped fighting for me. I believe it started with the prayer that my Mom prayed.

I really do owe everything to my parents. My Mom kept her word, and she and my Dad raised me to know and love Jesus. They have literally given up everything so that I can live a healthy and happy life. All of my life flows from Jesus, and then it all flows from my parents. All of my relationships, independence, and health are possible because of them. I’m a lover of Jesus. I love to love. I have great friends. They laid the foundation for my life, and what a foundation it was! They continually sacrifice everything for me. I am so blessed. My parents and brother Michael, along with the rest of my extended family, have truly given me everything. It is a great desire of my heart to see my parents have the marriage that they were destined to have. Please don’t misunderstand me, they are very blessed. I know they would do everything over again for me if they had to. They’ve had a better marriage than some people with perfectly healthy children. But I want nothing less than their full inheritance and destiny. They are a son and daughter of the King! I want them to not have to wake up and roll me over five times a night. I want them to live on their own. I want them to be able to go on any vacation without having to worry about who will take care of me. I want them to be financially blessed in an extreme way. I want them to not have to care for my lungs everyday. I want them to have two perfectly healthy sons. I want them to know the intoxicating and ecstatic love of Jesus in ways they’ve never dreamed of before! I want them to have a marriage. They’re truly in love, and I want them to know what that’s like without my SMA. I’m so thankful they’ve risen above our circumstances and have fought for each other. I will join this adventure with them and honor them for all of my days. I will love them forever. I believe our circumstances will bow to Jesus! They will have the marriage they were destined to have!

Jesus I’m so thankful for what you’re doing! Wreck my parents with your outrageous love! We say yes to your yes! On earth as in Heaven.