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meganmps 
Today is Tuesday, July 31st. Last night was a bad night, not for Megan but for me. Though I know mentally none of this is my fault in my heart I still have guilt. I still ask God why? Why her? As horrible as that sounds, I just can't help myself. I used to wonder what her life would be like now I wonder how long I'll have her in my life? I want to see her grow up, graduate, go to college, be Dr. Moo, be a wife, a mother, a grandma. I wanted to so many things for her before, I still do now the things that I want are just different. I found out a few weeks ago that Megan may need surgery on her back and it was just confirmed on Friday. Still trying to swallow that one let me tell you. I want so bad for us to just wake up one day and find that miraculousy there has been a cure found over night. I want so badly for life to go back to things the way they were before. When she was just my little girl, not some patient with this RARE disorder that no one has heard of. I want my baby back! She shouldn't be used to shots, IV's and Doctors. I want to go back to the time when going to the Dr. was fun not scary. I want I want I want............
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Megan, I know exactly how you feel, and when I get myself together I am going to write an article of our experience as it neared the end. I wish I could help you, but if you need to talk I am here
angel71753