Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!
Reflection
I watch your body strain and contort in ways that make my body ache as your brain sends uncontrollable impulses through little body. I lean close to your chubby cheeks and whisper in your ear that I am here now. I tell you how much you mean to me and how you have forever changed me. I wonder if the sound of my voice soothes you just as every breath you have ever taken has brought new meaning to my life. Your body is a prison in which you are trapped without control and means of communicating. I reflect on my own complaints and realize I am selfish in my rants as I have the ability to make a change and you do not. Although you depend upon me for your every need, you never whimper in pain nor do ask for anything but love. I tell myself that I need to be strong for you when in reality I am weak and your are my strength.
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