Thursday, October 16, 2014

For just one day.

Yesterday was a miracle day for us. We don't know where it came from or where it went but for yesterday, Rett Syndrome did not kick Abby's ass. For yesterday she stomped all over it. Like a little Princess Ninja. She woke up about half an hour before her alarm. She was happy, ecstatic even. Like she knew her neurons were firing. She wasn't humming. She was jabbering. She would look at me and squeal. Squeal with delight. I didnt really get it in the morning but I loved it. I figured she would fall asleep on the way to school and that would be the end of it. But I kinda wondered through the day. I almost called a few times but I didn't.

 When she got home she was squealing. When I said Hi she said it right back. My non verbal child said Hi. She smiled and laughed and her nurse and I were just in tears. When she did her few minutes of assisted walking and penguin dancing with Dora after her evening tube feed she did without having to balance herself constantly. Without having to constantly move from side to side. 10 minutes turned into an hour. An hour on her feet without falling. When Dora would end and commercials would come on she squealed with delight about different shows...DIFFERENT than Dora. At that point we had to sit down and try to figure out what we had done in the last day or two. Any different ingredients in her food? Did she miss or add a med? Was anything added or subtracted?
Her brother was hanging with us. This is unusual. We were teasing him and he was ribbing and cracking on himself. At a particularly funny quip she hit herself upside the head, laughing and said,"Oh boy!" Two words together? What? I loudly said "Abby." I was shocked and in awe. She looked me dead in my eye, smiled and said,"Abby" while patting her chest. I could have died at the moment. Something was happening. Her brain was working with her body. We were all just beside ourselves. So caught up in the moments we just enjoyed it and didn't try or even think to film it. It came in spurts, exploding out of her, here and there.

 When she went to bed I got her book bag and her notebook out. Her teacher wrote excitedly that Abby was Very vocal all day. Really really social and happy. Spot on with her work with even some hand use. Hand use! I went to bed happier than I've been in ......as long as I can remember. I almost felt some peace in my heart.

 That was yesterday. Rett returned with a vengeance this am. No eye contact, lethargic, hand mouthing. Falling asleep instantly like an infant. Blank. I know I am not the only one that thinks....I wish I could have her back, have her be normal, have her a little better...even just for one day. I guess that was yesterday. I need more. She deserves more. October is Rett Syndrome Awareness Month. this is our reality.

Yesterday, all my troubles seemed so far away
Now it looks as though they're here to stay
Oh, I believe in yesterday








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