I'm not afraid of my own fears...

Some days everything slows down, and I’m covered in chubby baby hugs, inhaling the sweetness of their breath as I thank God for being blessed with my children. NF2 is a genetic disease, meaning that when I chose to have children I knew full well there was a 50% chance that my children would also have the disease. My son JT does, and my daughter Mica does not (Blessed be!) It was a difficult and personal decision, but I will say I believe life is for the living, and I refuse to live as the walking dead. We all take chances each day, and tomorrow is promised to not one of us. My children are blessed with two parents and a huge extended family that cherish and adore them. They will never want for anything, they will be loved and safe their entire lives. We will undoubtedly face days of illness and pain, but we will face them together, as a family. While I am full of hope, I am always realistic, and know I may one day be preemptively taken from my children as my Mother was from me. My heart aches at the thought of not being a part of their adult lives. I live in a state of perpetual fear that a Stepmom will help choose Mica’s wedding dress, as my amazing Stepmom helped choose mine. Again, I will be my Mother. I will wear the brave smile and tell my kids not to think of me, to move on as I will in the next life. Yes, it throbs deeper then a young broken heart, it eats at my soul with the harsh brightness of the Truth. My kids may not even remember these stolen sticky kisses, running in the rain, cuddling in the early mornings. These memories are the components of my soul, the fibers of the love in my heart. No one can take them and they make anything that may come worth every painful moment. What is now will always be, and what we have will survive as long as we have Hope. Always hope…