I have been down the awards road with my other kids. I was happy for them with all the awards they earned, but I also knew that many of the academic ones were not earned with incredibly hard work. They were sort of awarded for being smart and doing what they were supposed to do. Congrats was nice and obviously, they could have chosen to squander their brains and behave poorly. So awards were good to acknowledge they were "good kids".
As I go to awards events now with Ayden Jane, it is different. I mean, I see lots of kids getting awards just like my big kids did. It's great that they use their gifts and make great choices. I hear the same sort of awards I have heard in the past.
I think all of this hit Gary today as he was watching Ayden Jane's final award celebration at Elementary School. I was at work, so did not attend and he sent me this text: I want to stand up and tell all these people that Ayden Jane deserves an award!!!! They have no idea whatsoever. I guess that's okay, but she's a brave little girl.
I think it sums up the struggle. On one hand I want to tell people what Ayden Jane's diagnosis says she won't be able to do. I want people to hear how much she is supposed to be struggling. I want people to have an understanding of how much work this kid puts in and how much crap she puts up with from PWS. On the other hand, I want people to see her as a typical kid and not treat her differently. I mean, that's the goal. Make PWS invisible. Trouble is, if they don't know what she fights everyday, they can't know how amazing she is.
So, I believe Ayden Jane would earn the BRAVERY award if there was one. I mean, she forges ahead fearlessly. She is happy to take on the role of being one of the first to try things and knows that others are learning from our mistakes and rewards. She boldly goes where PWS could not before.
I think she would also win the WAKE UP AND DEFY THE ODDS EVERY SINGLE DAY award. I think sometimes it's the every singe day piece that amazes me. No matter whether the day before was a hard fought, miserable,wonderful, exhausting, painful or joyful day. Whether it was a triumphant victory or miserable defeat. No matter, she starts fresh every morning with a positive attitude, ready to give every ounce of effort toward whatever she is doing that day.
That's the stuff awards are made.
As I go to awards events now with Ayden Jane, it is different. I mean, I see lots of kids getting awards just like my big kids did. It's great that they use their gifts and make great choices. I hear the same sort of awards I have heard in the past.
I think all of this hit Gary today as he was watching Ayden Jane's final award celebration at Elementary School. I was at work, so did not attend and he sent me this text: I want to stand up and tell all these people that Ayden Jane deserves an award!!!! They have no idea whatsoever. I guess that's okay, but she's a brave little girl.
I think it sums up the struggle. On one hand I want to tell people what Ayden Jane's diagnosis says she won't be able to do. I want people to hear how much she is supposed to be struggling. I want people to have an understanding of how much work this kid puts in and how much crap she puts up with from PWS. On the other hand, I want people to see her as a typical kid and not treat her differently. I mean, that's the goal. Make PWS invisible. Trouble is, if they don't know what she fights everyday, they can't know how amazing she is.
So, I believe Ayden Jane would earn the BRAVERY award if there was one. I mean, she forges ahead fearlessly. She is happy to take on the role of being one of the first to try things and knows that others are learning from our mistakes and rewards. She boldly goes where PWS could not before.
I think she would also win the WAKE UP AND DEFY THE ODDS EVERY SINGLE DAY award. I think sometimes it's the every singe day piece that amazes me. No matter whether the day before was a hard fought, miserable,wonderful, exhausting, painful or joyful day. Whether it was a triumphant victory or miserable defeat. No matter, she starts fresh every morning with a positive attitude, ready to give every ounce of effort toward whatever she is doing that day.
That's the stuff awards are made.
I absolutely love your blog. As a mom with a daughter who also has PWS I can relate. Although my daughter is older so reading your blog brings back many memories. It's nice to know another mom with a PWS child is going through similar struggles and victories.
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