Sara had a rather impromptu OT session today. I had to pick her up from school and take her to a place (school) where she had never been before with a rather new (for her) OT. She was less than thrilled. She does not receive too many services anymore. She used to have OT twice per week. For the past year she has only had the service once or twice per month. She is less than thrilled and today she mentioned that she just wants her hands to be left alone. I don't know at what point AMC kids stop receiving services, or if they ever do. I'm sure it varies depending on need and services available. I don't know how much of a fight to put up at home to stretch and strengthen or write. It's always a struggle to know how much to push her at home to use her hands at home when she can use her feet so much more proficiently. However, at school she refuses to use her feet, so I feel like I need to work with her more at home to use her hands.
Her OT's have been so helpful with providing support and encouragement. Sara works so hard for them...something I have not been able to duplicate at home...at least not with lots of frustration and whining from Sara. What usually happens is we do our writing and strengthening for several days regularly, then I get tired of listening to the whining and attitude and stop pushing her although I know that she's capable. Then we'll have OT again and so I'll start back up for a while.... This seems to be the pattern. Tomorrow we will once again try to start yet a new sticker chart that leads to a reward for working with her hands. I'll try to be calm on the outside, although I feel tense and stressed on the inside. Not because of Sara's whining or attitude, but because it's a blatant reminder that my little girl just wants "normal" hands and not "little" hands.
Part of me is still clearly grieves her hands, now we grieve together...during the sessions. She just wants her hands to be left alone, so she doesn't have to deal with them. Frankly I feel the same way. It feels like therapy sessions, regardless of where they are, open up wounds that don't heal. I'm sure the grief will never completely cease. When she's not at OT and when we're not doing our home sessions, she's just my little girl. That's how I like it.
I think I'm going through an anger stage of grief. I feel angry when I see that she's struggling to do simple things with her hands. I feel angry at the things she's missing out on. She would be a great gymnast. I keep thinking of Anna at that age and can't help from feeling how unfair it is for her. I can't help but think that this is not how she was meant to be. She was meant to be perfect. She was meant to have strong arms and hands. But...on this side of heaven, things are not perfect.
She has told me several times that she does not like her small hands and she asks me why her hands are small. My answer to her is the same every time: "Sweetheart, I don't know why you have small hands. But while we're here, God has a plan for you and He will use your small hands for His glory and when we get to heaven, your hands will be perfect and strong!" It is the upward focus and hope that carried me on the day she was born and it's what carries me today. I hope and pray that it is this same hope that will carry Sara as well.
Lord, carry us. It's the only way. Encourage us and give us hope.
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