Thursday, October 22, 2009

Kid of the day


Every so often Tatyanna's grade 1 class has what they call the Kid of the Day. It's a moment where they can celebrate the individuality of their peer and practice their drawing and printing skills. Recently, it was Tatyanna's turn and before we could even get her stuff in her locker there were kids running out of the class excitedly informing us that Tatyanna was going to be that day's chosen child. Truthfully, I had no idea what exactly it meant so I smiled, responded with an enthusiastic "wow! that's awesome!" and went on my way. When I returned to the school to pick her up, I was given a package containing all the drawings that the kids had made. As I began to flip through them, smiling at the kids' burgeoning art skills, I began to notice something that truly made my day. Some kids had chosen to draw the gold ring on her finger, some gave her ponytails, one even attempted to draw her bright orange wheel chair, but almost everyone had drawn her with a huge smile. As a parent to a "sick kid" I always worry about how her condition will affect those around her. Batten Disease is complicated and we have really struggled with how much information to share with her class. I know that eventually there will come a time when we will have to withdraw for the sake of the other kids but for now, I feel good about our decision to have Tatyanna attend a regular grade 1 class. At this moment, she is an important part of their class, and although she has some obvious issues, they choose to celebrate what is good.

Friday, October 16, 2009

I can't believe that we're already half way through October! Tatyanna has now been back at school for over a month and continues to do really well. She actually really enjoys going to school this year and we have been adding in a few full days every week instead of all half days. This is something that we had serious reservation about at the beginning of the year. The kids in her class are truly an amazing bunch and really try to make sure that she's included in what's going on in the class. So far her favourite parts of the day are definitely gym and music. :)

Physically, Tatyanna continues to be relatively stable. We do, however, have some concerns that her eyesight is starting to fail. While she still enjoys watching T.V. and looking at books, we aren't certain how much longer this will last. We have decided against having any sort of evaluation done, as for us, it's not important. With Batten Disease, loss of eyesight is inevitable and we feel that we function better not knowing exactly how much our little girl does or doesn't see. Despite this, she is still very much a happy little girl and blesses us with her smiles and giggles every day.