Today driving home my daughter asked if her sister was still sick now that she was in heaven? One of our daughters was so affected she only lived 3 months and 3 weeks. Ray wanted to know if she was healed now. We talked about how now she had no pain and she was whole. She could be happy. It is close to her birthday and so we are all thinking of her. Ray looked at me and said “well I know that God can’t heal me I will always be FAS. But mom, when I go to heaven will I still be FAS?”
I asked why she thought she would be. She said “because mom once you are FAS you can never be perfect.” She broke my heart with this because she is perfect. She is a wonderful, loving little girl who has almost no friends and struggles to have any self esteem. She is 10 and tiny. She can talk like she is 18 and so a lot of people insist she is fine and she is just a lazy little girl who ignores her teachers. I hate that at the end of the day all she feels is no matter what she will never be “perfect”. I want to make her feel as though she is the precious person she is to me. Her Dad would die for her and her Grandparents worship her and yet she still doesn’t feel good enough.
It is so hard in a society where we always concentrate on trying to fix everyone. All IEP meetings are about what the child is not doing. We forget to look at what they are doing. What can we build on? See if we could concentrate on their gifts there is just so much that they can do. So much they have to offer. I hope that someday I can help Ray to know that she has so much she can and does do “perfect”. That I don’t want her to be different. Now don’t get me wrong if I could stop her feeling different. If I could make it easier for her I would do it in a heartbeat but she is not “damaged” to me. She is my daughter. She is a piece of my heart. In heaven she will run with her sister and never feel unworthy…I want to let her run for a time here without feeling unworthy too.