Needing control as its leaving me. I fear the unknown, why is this happening?
I am not someone who likes to feel out of control but that is what this whole 18 months has been for me. Never knowing what is gonna happen to my little boy. I thought the heart problems were bad and I thought that was gonna be our struggle for the rest of his life but really that isnt an issue anymore, now there is way more to worry about. Recently i was woken up by my 3 year old little girl telling me her brother was crying. I shook my husband to get up and check on him. Next thing i know my husband is screaming for me to get out of bed to help. Tristan was having a seizure. After being at the hospital we followed up with neurology and they ordered a MRI on his brain because he had been showing signs of developmental delays previous to the seizure. The MRI came back that my son has brain damage but they dont think that is the only thing causing his severe delays. Either he has a genetic disorder or he has autism. I would like to think i have support from friends, family, church members but i dont think anyone knows how much pain im in. He doesnt feel pain so we dont know when he gets hurt, He doesnt talk, he cant taste his food so he doesnt eat, He is banging his head into things, I never know what he wants because he cant communicate with me, Everytime he gains a skill he loses it. This is just hard and i hate not having the answers. I am trying to turn to god in all this but im just struggling. He is my baby and there is nothing i can do for him. He is in therapy now and he is doing really well. Im just worried for his future. I am very anxious to see what god has in store for my little mans life.