Our lives seemed so "normal". It was anything but normal, but to us it was imperfect perfection. At 6:03am on June 21st, 2012 - our lives stopped in an instant. I had just finished rubbing lavender scented lotion on the bottoms of her tiny feet. I will never forget the smell, the touch of her tiny fingers. Brushing my teeth so early in the morning will always be a reminder of her final breaths. My brother gently spoke to me, telling me I needed to come back to her bed. "It was time." Our family was close, but scattered throughout the "house". It was just before 6 and I crawled back up onto her bed. I spoke in whispers to her, I held her legs and caressed her feet. Everyone gathered. The sounds of the ocean crashing onto the shore from her noise maker seemed to soften, the only sounds I heard was my sweet little princess taking her last breath. My head was spinning, life ended. Or has it just begun?
Life over the past sixteen and half months has been mostly in a fog. Moments of clarity are few and far between. However, we continue to live. Our continuous heartache is a painful reminder of the fight she so courageously fought. A piece of her baton passed on to each of us as we continue her fight against rare childhood disorders and our hope of victory against Mitochondrial disease.
Our own lives moving forward will never be easy. We will always grieve the loss of our princess. We will never be the same. Our lives will never be "normal"... but Mylee's spirit continues to light our way. Through her research fund at TGen foundation, we are hopeful of new and upcoming treatment options for children like Mylee who courageously fight each day. For more information about TGen and Mylee's research fund, please visit www.tgenfoundation.org or make a donation directly to Mylee's research fund, www.myleesfund.org.
Never Give Up,
Sara
