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Friday, December 31, 2010

Another Year Ending

I glanced at Janey from another room today, and saw suddenly how big she is getting. She's turning into a school age girl, not a preschooler or toddler or baby. It's amazing and scary.

I'm trying to sum up this year with her, but it's hard. It was a year of ups and downs, as they all are, more extreme this year than in some cases. There was what I will always think of as "the terrible time" when she cried day and night for about a week, screamed like she was being tortured, more accurately. There was the giving in and putting her on medication, there was the adjustment period, and there was September, an incredible month of progress for her, the amazing start to school, the happiness and socialness and friendmaking. There was the regressions since then, there was this recent week which was tough. Overall, the big progress she has made this year is social. She sometimes greets people now, she is happy to see people she knews, she is more affectionate overall. Her talking is better in some ways, although still very limited. I think her vocabulary grew a good amount, but much of it is still buried and only comes out at the perfect prompting. She is showing very slow progress toward toilet training, and I am able to believe that will happen some day. Her emotions are a little more under control, but she still can and does have days where everything sets her off. I think Tony and I are feeling more positive in general about our life with her, but also more resigned. It was another year without a miracle breakthrough, not that I reasonably expected one, but I'm gullible enough to sometimes half believe the hype and think they sometimes happen. We know this is for the long haul. The day by day triumphs don't change the fact that for whatever reason, fate has dealt her a tough hand, and us too. I'm not going to say what I'm supposed to say, that we have realized she's a blessing and she has made every part of our life better. Of course she's a blessing---she's a beautiful, fascinating kid. But she has a disorder, a disease, if you will, that is going to keep her from living the life she would live otherwise, and it would be paternalistic and wrong to say I'm glad of that. Sometime, somewhere, something happened that robbed her of the potential she should have. It's not fair to her, much more than it's not fair to us. That's maybe not too uplifting for a New Year's Eve post. Let me try again. The best we can do for her is to accept her, accept what she is right now, use it as a starting point and do what we can to give her the best life we can with the limitations imposed. Not to accept her as some kind of canvas to try to work cures on, or some kind of reflection of some point about mankind, but accept her as a child with limitations, and love her.

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