Hindsight

It is amazing to me that I could live with precious JadenGrace for a full two years and not know that she was different. I am learning that is common--that most children are not diagnosed until they are two or older--and the parents not knowing that anything was wrong.
Hindsight is painful, though. I remember times when I knew something was off, not right, strange, but always had another reason for it.
When Jaden was around 12 months old, she started doing this 'shiver' thing. She would sit in her highchair and just tense up, as if she was cold. Her body, from the waist up it seemed, would tighten up, even her face. It would only last a second, and when I mentioned it to Reg, we concluded that she was playing. It didn't appear to harm her or bother her--so we thought it was a cute part of her personality that showed up when she was excited. Except it didn't always show up when she was excited. Mostly it was in the middle of dinner, with not a lot of emotion going on....
Later, we found out it is common in children with Developmental Disabilities...
Once, when Jaden was about four weeks old, she was in her portable swing next to me while I was on the computer. She was kicking and starting to fuss. I leaned over and tried to get her attention. I wanted her to look into my face so I could reassure her that she wasn't alone and that she could spend some time 'chatting' with me....but I couldn't get her to look no matter how hard I tried. I thought to myself 'that's odd'....that's all I thought....'that's odd' ....It had been a long time since I had a baby--9 years--but I *thought* babies loved their Mama's faces starting about that age....
When she was 5 months old, she caught RSV. The illness and the steroids started her waking in the night again, after three blissful months of sleeping all night. She kept up that pattern of waking on and off (mostly on ;)) until she was a bit after 12 months...Her crib was in our room and Reg determined that if she couldn't see us when she woke, she would sleep better, and so he moved her crib into an empty bedroom. It worked, almost from the first night! She had a Baby Einstein toy hanging on there, that lit up and played classical music. I would pull it for her while she lay on her back--and I prayed for her. I didn't realize she never paid attention to me. She never looked at me. She never cried when I left the room. She never looked up. She just stared at those lights. I just thought she loved her music. And she was an 'easy' baby. It wasn't until later that I realized that wasn't normal--that she would never once look at me as I was tucking her in, praying, and talking to her....rubbing her hair back and reassuring her that I would come back to get her in the morning...
It is still painful to put Jaden to bed at night. I have short waves of unfounded guilt that I have to fight off--that if I hadn't let Reg put her crib in that room, with her all alone--or if I hadn't ever bought the stupid light-up music-playing toy--she would still be here....interacting with us.....Even now, it is almost a relief for her to get into her bed at night. She is getting better about eye contact during the day, when we work her hard....but at night, no. She doesn't look me in the eyes. She rolls around and patiently waits for me to finish praying for her, and turn on her music. She doesn't even look up when I head for the door.
There are other things I remember that I want to share but must go for tonight. My mind goes faster than my fingers. :)
More tomorrow then.