Monday, February 25, 2008


For the most part, I have no problem sleeping - when I can. I am so exhausted each day (both physically and mentally) that when my head hits the pillow, I am out.

My sleep is over when the trembling begins. I lay next to Mike and try to relax him, as if anything I say and/or do can reach the mechanisms of his brain. For about 30 mins. to an hour, his shaking continues. Sometimes, it's so hard, his head jerks forward or back, his shoulder cracks, his legs flail. Then his body relaxes and sometimes he goes back to sleep. I guess he's exhausted from all the movement. If I am lucky, he stays sleeping, if not, the process begins all over again. Every day it's the same thing, always around 5am. At 7am I get up and begin my day - I leave the door to our "bedroom" shut to keep out the noise of the morning. The kids get ready for school, the dog wakes ups and starts barking, and I begin getting Mike's food, medicine and drink ready for the day. After all of Mike's needs are taken care of and the children leave for school, I go take my shower. It would appear that this should be my relaxing time, but quite the contrary. The entire time, I wonder if Mike is OK, if the shakes are continuing. I close my eyes and pray. I come downstairs and open the "bedroom" door about 15 minutes before Mike gets up. If he has fallen back to sleep, it's ALWAYS best for him to wake up on his own. Sudden sounds can bring on more shaking. I pray that he wakes up on his own because I don't want to wake him up. Nathan cleans him up and gets him dressed. I help Nathan get Mike out of bed and bring him into the living room. If I am lucky, Mike will give me one of his BIG smiles, sometimes even a laugh, before I go off to work. That ALWAYS gives me the strength I need to get through another day. And so goes another morning at our home..................

(This picture is of Courtney and Mike a few nights ago getting ready for bed. He leaned over her and I placed his arm around her. It was so cute).

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