by Jade Smith
about the author:
Jade Smith and her family received her son’s diagnosis of Duchenne on July 7, 2021. They have since created the nonprofit Quade Journey Duchenne Muscular Dystrophy (QJDMD) to educate and support other DMD families in South Africa and around the world. You can find them on Facebook and Instagram.
Way Too Fast:
Our First Year of Duchenne
I Just Need You to Know
As I watched the journey unfold with every breath, you made me rise and fall in our first year of Duchenne. We went through all 4 seasons of life every day.
I remember your tiny hands in mine, looking down at you and how you look so much like me. All I want to do is give you everything you need and transfer all my strength to you.
I don’t ever want to let you go. I find myself capturing every moment of your life wondering what this life may bring. I just need you to know wherever this journey takes you, I’m already proud.
Although scraped knees and broken dreams are our reality now, I still can’t wait to watch you grow.
I remember praying a year ago, that somehow I just wished you could slow down and give me a chance to catch up, adapt or automatically know what to do. It just happened all too fast.
I find myself stuck between “before” and “after” Duchenne, wondering what we could have done differently before the diagnosis.
But as we sit here today, I know that this is your purpose. Your purpose is to change the journey of so many more lives. Even if it’s hard at times, we will refocus and readjust.
Way Too Fast
I don’t think I was paying attention to how fast we were going until I found myself running low on faith. All I could do was throw my hands up in the air and let Jesus take the wheel. I knew we were going way too fast.
Although many nights this year tears ran down my face, God gave me you. He knew together we would fight the ups and downs, the days of doubt, and the days we just lose our way.
Looking back, there will never be enough words to describe how hard this year has been – how much we have done in a year, how blessed your journey has been, how the start of your legacy has already touched so many lives around you and changed people’s lives because together we fight every day.
My boy, eight years ago, you – a legend – were born. But always remember it’s not the legend that serves the next generation.
Leaving a legacy is about building GOD’S Kingdom. It’s the art of multiplying your life and not gathering followers. Leaving a legacy is about creating something that will last far beyond your time on earth.