I easily forget what a huge part of Annie's life has been. There was a long period of time where Annie would either be in a rage, or sleeping. She'd get agitated, it would escalate into a full blown physical fight where any 2-3 of us family members would be holding her limbs and torso down on the ground in order to keep her from breaking furniture, kicking or biting us, and worse, trying to hurt herself. Some days this agitation would last around 30 minutes which melted into around an hour long rage which turned into a 20 minute "cool down" where she'd cry and breathe heavily, her sweaty body shaking from all that it just went through. She'd fall asleep for 30 minutes to an hour and it would start again. There were times when my parents talked of building a padded safe room for her. There were talks of how to handle situations if she were to start having a seizure or maybe if the police were called by the neighbors, how to explain her illness to them. None of these things ever happened. Our family has been surrounded by loving, patient and caring people for all of Annie's life. This went on for years of her short life. At one point, 2 of my sisters even moved into my apartment for a few days and everyone took shifts helping with her because it was so physically and emotionally taxing. Sometimes it was at its worst, sometimes it wasn't as bad. But there was one thing for sure, she had no quality of life. She enjoyed nothing. She was always irritated and frustrated. She never seemed to have any peace. My family walked on egg shells, always being afraid of a rage. We all have scars from trying to hold her down. We've all had things special to us broken etc. But none of that even compares, not even close, to what my poor sister has endured. She has been trapped in this state of living her whole life until now.
People ask, "how is Annie doing?" Out of habit, I start to respond with, "Well, not great.." but when I think about it, its incredible. She IS doing great!! For the first time in her life, the last year, two years, she has had very few rages. Some days she gets frustrated and its very challenging but its been nothing like the years past.
I told my husband, I feel like I'm getting to know my sister. She'll be 15 this year and as a Batten kid that's nerve wracking to think about. Its frustrating, that its taken all this time for her to calm down and to know we only have so much time left. But still, the opportunity is here, and I get to meet my sister. I get to laugh with her, talk with her, I'm getting to know Annie. She has a sweet and thoughtful personality. Always giving gifts to anyone and everyone. She says hello to everyone she passes and always asks if they'll be her friend. She loves to watch My little Pony, pretend she has a pig nose like Penelope, eat Chinese food and rice. Her favorite color is purple, her favorite singer is Taylor swift and last I checked she was still engaged to a Jonas brother. These are all things we have all known about her for a while but she's never gotten to fully enjoy any of it until recently. She can finally let loose and dance and sing in the car, she can go shopping with you. She went to a loud, crowded crab feed with my family on a Saturday night and it was 9:30 when we were in the car driving home. Not a single fit the whole time. This week on Easter break, she came to my house to spend the night Monday, walked to Baskin Robbins with us Tuesday, went to a memorial service and then out to lunch Wednesday and today I got a text with a picture of her headed out to lunch, again!! This is a record for this girl. Its quality of life for the first time in her life. She is beautiful. I love her so so much. I never loved her any less in the past, but it feels like, for the first time, she is able receive love. She is able to live out the love that she has for everyone rather than being trapped in a rage. This time is special.. I'm always nervous that she'll go back to how she was. If she does, I will be even MORE thankful for this fun time in her life. For her laughing and joking (she has quite a sense of humor) singing, dancing. She's living!! and loving it. Its nice to know this Anne Marie.