Life Sentence

Our daughter Alison is the best big sister that Daniel could ever ask for.

She is also a dreamer. Especially when it comes to Daniel. For many years she has dreamed about what Daniel will be like when he gets older. She has pondered who will marry him and wondered about his children. We have taken this in stride and plainly told her that Daniel may never get married or may never have children. This has never caused her to stop dreaming or wondering out loud.

When Jason gave Daniel a bath last night, he commented out loud the question of what are we going to do when Daniel gets too big for the bathtub. He keeps growing--they both do. Alison chimed in that Daniel could just take a shower with her. Daniel still cannot stand on his own and when he gets wet then he is double in difficulty to lift. We told Alison that taking a shower may not happen and she got quiet.

Do you know what it means for Alison to be quiet? We knew she was intently thinking about this. I pulled her over and wanted to gently remind her of what the specialist said just a few months ago...that there is a great possibility that Daniel may never walk. She went to her room. A few minutes later Jason called her back in and we explained (Jason did this well) that we will take care of Daniel until we (Jason and I) can no longer take care of him, and that it may mean putting him in a group home someday. At that Alison flat out told us that Daniel was NEVER going in a group home and that he would live with her no matter what! We told her that was a sweet thing to say, but not to forget that she may be married with her own children one day and that Daniel may be too much for her to handle. We explained that Daniel would not be far from her and that we would all visit him and love him no matter what.

Then she cried, and I saw it...I saw the realization in her eyes of the life sentence that Daniel's disability is. I cried too knowing that she knew what we all knew. She finally understood that Daniel is who he is and will not be the little brother she dreamed of having. I think on some level she always understood that, but she is a dreamer and she continued the dream for as long as she possibly could. Yet last night she woke up and to me, that is the saddest thing I have ever seen.