Monday, March 14, 2016


Well, it's nearly two weeks into March already! It must be soccer season. Nothing else makes time fly quite like this time of the year.

Ayden Jane is handling both swim team and soccer right now. It feels over booked, but a big break is coming, so we should be good.

Watching Ayden Jane at both swim team and soccer is such an experience in mixed emotions. On one hand, she struggles....  On the other hand, at times she surprises me with how well she does something. So one minute I am stressed out by her seeming to not even realize a soccer game is going on, then the next minute I am so proud of a great run down the field or a time she stepped up and took the ball.

I guess the worry I have for her in the sports arena is more about me than it is about Ayden Jane. I mean, I was athletic, and the thought of not being able to be good enough to truly feel like a part of a team just seems like a terrible thing. In the grand scheme of life I do realize that it's not really that important. and I'm sure there are lots of other ways to be happy. It's just that this is the avenue I know best.

As I watched Ayden Jane this week in her activities I think what struck me more than anything is her heart. That may sound strange. We use the term, "she has heart" to mean somebody works hard and gives their all. We use the term, "she has a big heart" to mean someone cares openly for others and is generous. Sometimes, people use the term, "she has a good heart" to mean that someone is kind and sees the best in others.

I think all of these 'hearts' apply to Ayden Jane. I watch her work ethic and I know that she truly does play, learn, exercise ... live, with heart. She gives everything her best effort. I know that she has a big heart toward her friends and wants to help them and is generous with whatever she has to give or share. I see genuine kindness as she complements her friends on their skills or encourages them as they are learning something new. There is no envy in her over things coming easier or the foods others can eat or just the fact that they have all their DNA and very few doctors appointments.

We talk often of her friends with PWS and the struggles they face. Ayden Jane cares deeply for these kids. Like she feels a special connection to them. Her biggest hope is that they will be able to enjoy life just like she has. She genuinely feels like she has it wonderful because she is able to do all the things regular kids her age do and she knows that lots of kids with PWS just can't keep up.

So, our kid with the rare genetic disorder has a confidence about her that is uncanny. She truly feels blessed by all the things she can do and the thought does not really cross her mind to complain about all the extra work she has to put in just to keep up. Yep, she can teach us all a thing or two.

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