Things keep changing

I'm struggling to find the right words to begin this post. I have wanted to blog and I think about writing something every day but I don't. It is easier to think about it and make an excuse not to than to complete the task. I have a feeling I have been postponing as I am again in a period of unrest. 

Logan is fine. He has been sick a few times since September but nothing we couldn't manage. He is in preschool three days a week. Still, good things to report. 

But as he and our family proceed day by day I see my son declining. He hardly moves. He is distant. He is weak. His eyes do not sparkle. Even simple enjoyment of a favorite show or movie do nothing for him. He stares off into space. What he thinks about, I will never know. 

My gut says this is his degenerative disease is rearing it's ugly head. It could be the medications he is on, but I don't buy that. I feel like he is slipping away but so slowly that it is like torture. He is gaining weight and most people would praise that. I do not. He used to move so much and burn so many calories that we could barely get him to gain an ounce. Now he is overweight as he has little physical strength to burn the calories we give him. 

These days we have to give complete support to his body as he has no ability to hold up his head or control his extremities. I'm not saying that he doesn't move at all because he does. His hands writhe a little and he moves his feet. He will arch his back and throw his head back contorting his body. We think he does this when he is upset or can't swallow his oral secretions. Sometimes it looks like a seizure. Other than that, he lays there. 

It makes me sad. Is he enjoying life at all? Is he sad? Or does he even understand what is happening? 

What I do know is that he still responds to my voice and my comfort. He still snuggles with me and closes his eyes when I hold him close. When I kiss his face he sometimes winces like a little boy trying to say "stop kissing me mom"! He listens when I sing to him but I think he prefers his Grandma Cindy's singing better! His face is that of an angel and the feel of his skin is smooth as silk. 

I end this post here as I have run out of words to say other than, thank you a million times over to all of you who pray and send positive thoughts our way. I promise my next posts will be more exciting and fun!