My heart aches for my sweet little boy. I look at his big blue eyes everyday and see such a strong boy. He has no idea that he has a terminal illness. He doesn't understand when his legs won't move, or that he doesn't have enough energy to play, but what he does have is a brilliant mind! His memory is sharp. I pray to God every night that a cure comes fast. I do not want my baby to lose his mind and memory.
This past weekend and the latter part of last week he had a few episodes… He is recovering now.. His hands are still shaky and he is tired. I am trying to keep his life stress free, no over stimulation. It seems that could be one of his triggers. I meet with the pediatrician tomorrow morning regarding the feeding tube. Will's appetite has been extremely low the past few weeks. He needs nutrition to provide energy for his body.
Every night after the kids go to bed, I lay in bed and cry. I pray that I am having a nightmare and beg to be woken up. Then I realize this is my new reality. I know I have to be strong but the pain in my heart is so intense it feels as though my chest is collapsing. I am a fighter, Will is an even stronger fighter. We will not let this disease take him. I hate you Leigh's Disease. You can go to hell where you belong.