Hard time settling

i am having a difficult time getting myself to settle tonight. i should be in bed by now. my head just keeps coming back to the same thing. The MIT.

A very special someone at the event last night, mentioned how much difficulty the MIT has been having over the last few weeks. He is right. The problem is, i can't say to him that it is going to get better.

His episodes of not being able to move either His left or right side is increasing. His going full-blown is increasing. His not breathing at night is increasing. His "funny" episodes are increasing. He isn't getting many breaks between the time a part of Him starts to move again, before something else stops. i watch Him get frustrated when He can't walk down the hall, or undress Himself without help. i watch as He monitors His food intake because He can't use a fork when His right side is gone. i watch as He tries to help around the house, but then falls and gets discouraged. i listen to His dreams of being able to live on His own. i listen to His dreams of having kids and how He wants to bring them up (not like you Mom, you are too mean lol). i listen and watch as He tries to do so much on His own, and try to let Him do it. i watch as His body works against Him and He struggles with the fact that it just won't. And i can't even say to Him that it will get better.

i am seeing this disorder, that no one can even figure out what type of disorder it really is, eat away at my son and make it harder for Him to live His life. i watch as milestones are being left behind. i watch as His balance decreases. i watch as the episodes take over more and more of His life. i watch, and want to scream. i know from others who have lost their children due to this disorder, the progression of what will come next. i know that this is just the start. i know that the "strange" episodes will come more often. i know that there will be more types of episodes. i know that each has died in their sleep. i know that each parent did not have a warning of what was about to happen.

So i just sit, watch, support, wait and hope. i encourage what i can from Him. i give Him what i can of the world and of being independent. i give Him opportunities to grow. All the while, i wait. i feel that niggling feeling deep in the pit of my stomach, that there will never be stuff He can accomplish because His body will give up. i feel hope that what i am seeing is not Him going as far as He will ever be able to. i feel hope that He will beat the odds and be one that does not go to sleep one night, and never wake up.

Tonight, i don't feel very hopeful. i just feel scared.