The Blind Man Stance

Today I spent the day with Annie & Catie. They both had an excellent day. Catie, after her 4 seizures this morning, was confused but happy. She's almost always happy. She was refreshed after her shower and watched movies and laughed from 12 pm when I got her out of bed until 6 when she began asking to go to bed. You could see that she was very tired and at this point frustrated. Her loss of speech is beginning to take a toll on her. She spent a little over 30 minutes trying to explain what movie she wanted to watch until finally she gave up. she rarely gives up. But tonight she did. She dropped her head and stopped talking. I felt awful for not figuring it out and began asking her questions in hopes to figure it out and she just softly shook her head no. Finally Annie asked to watch "bingo." As soon as the music began Caties face lit up! It was the movie she had been wanting to watch all evening. What a relief to see that smile back on her face. Catie is so strong that I feel so horrible when she finally needs help and I can't provide it for her. She quickly fell asleep after her movie and slept soundly as I left the house when mom arrived home. Annie was also fast asleep which surprised me as bed time is usually a struggle for her and the family. She always fights falling asleep and has since she was a baby. I can remember singing to her for almost an hour some nights as I tried to rock her to sleep at only 2 years old. Always so stubborn. Today was a wonderful day for her. Much better than usual. She had 2 melt downs after school. They were very calm though. Loud, but calm. After her melt downs she was very quiet the rest of the day. She watched 2 1/2 movies with Catie and Me, ate a healthy amount of dinner, and passed out on the bed.
She broke my heart today. She has the blind man stance. She rocks back and forth, her eyes dazed off into the distance, her face concentrated. Trying to hear every little detail around her. She looks so intently its almost as though her ears have little hands reaching out to discover everything going on around her. Her face screams "help me" but her stubborn little self rarely asks for help. She let me feed her at Baskin Robbins on our date yesterday. I almost broke down in tears. She fights to be so independent and is begining to give into the help offered to her as her independence is blacked out along with her eyesight. I just watched her today, tears streaming down my eyes on the inside, but trying to appear normal on the outside. She has such a hopeless and fearful look on her face all the time now. I know its just an adjustment for now. Before we know it we will all have broken hearts from the next thing that slips away from her we will learn to love her new set of eyes just as we have Caties. It does seem very different this time around. With Catie I was young and not looking for a difference or change. With Annie it almost seems more painful. That may seem strange and its not a greater love for one or the other. Thats how I feel and if people can't understand that its ok. I don't expect them too. Annie though, she was like my baby. I clearly remember her reaching for me out of moms arms all the time. She never slept in her own bed, she slept with me on my little day bed every night as soon as she was out of a crib. She was my closest friend at age 13. . I don't know. Its just strange. Its awful. Last week a client of mine brought her daughter in for a cut. Her daughter was a very mature little girl, explaining to me what she would like to see done with her hair. We discussed the cut I would do on her and her mom made a comment that threw me for a loop. She said, "if you could just fix the layers, the last lady made her look like a 25 year old and she's only 9." I thought to myself, Annie is going to be 9 next month. I couldn't even catch my breath for a moment. Looking at this little girl, I was so disappointed. Instead of long pretty little girl hair with clips and bows she now has short hair thats often a mess. When I hug her and give her kisses she smells of stinky girl and my lips taste like sweat because of her constant melt downs and anxiety. This little girl was dressed in a clean, neat little outfit. Annie only looks like that in old pictures.
I hold my tears in all day until now. Until I type this and face the reality of what I watched today in my sisters. I can finally let my tears out and no one will hear them or see them. What a relief.