grayness

Dear Emmersyn,

       We are taught as children that things are right or wrong, black or white. It is always wrong to lie, no matter how big or small the lie may seem. Its always wrong to take something that does not belong to you. But one thing you will learn as you grow up, life is rarely black or white. I have always been a planner. So long as I had a plan in my head, I could make it happen. If things seemed stressful, I just needed more organization. When It was overwhelming to work full time and keep up with all you brother's sports, I bought a white board and organized every evening for months. Organization and control have always been a stress relief for me.
     NF is not black or white. NF is gray. Your living in the grayness, the uncertainty. There are over 6300 known gene mutations that cause NF1, and countless physical expressions. NF symptoms range from only a few café au lait spots to the development of thousands of tumors to cancer and everything in between. Some NF complications include hypertension, seizures, cancer, learning disabilities, brain tumors, blindness, deafness, renal artery stenosis, pheochromocytoma, orthopedic concerns, etc. There are so many different components to NF there is no way to plan. Your future is a mystery. Of course everyone's future is a mystery. Bad things happen everyday. Healthy people become sick. But for you my dear, your future is likely to be rockier than most. For NF is a ticking time bomb. We will always have to watch for tumors, wait for the explosion, and pray for diffusion before too much damage is done. At just 2.5 Years of age, you have had  three MRIs, one surgery, extensive eye exams, two developmental evaluations, blood draws, Numerous physical therapy appointments, and chronic daily pain with physical limitations. Your life has not been easy. Your life will never be easy. I can not plan the stress away. I can not organize your pain away. Some days the sheer magnitude of your diagnosis, and the uncertainty of your future are too much to take. We have to take the bad days when they come. But we also must celebrate the good days. Currently I am trying to focus on the good things. Focus on your smile, your laugh, your sweet voice, your compassion, your heart, your love. Because all of the bad things that will happen in your life are worth it for just one smile and one kiss. You are loved more than you know, and you love with all of your heart. You are beautiful inside and out. You have purpose in this world. Your pain and difficulty has purpose. We may not know why or how, but God will use this for good. When life seems confusing and the grayness becomes overwhelming, focus on the light no matter how dim it may seem.

Love you always
Mom