Sunday, May 3, 2015

Day 3 - PWS Awareness Month - Being 'the mom'

At diagnosis, our hopes and dreams of what Ayden Jane would be able to do came crashing down. I won't get into the long list of things we were told Ayden Jane would not be able to do or the hard things she would have to deal with. I'm going more toward the "where we are now" side.

Ayden Jane is in regular classes at school. She works very, very hard to be average academically. Things don't always come fast or easy for her, but she has the persistence to stick with things until she gets them and once she gets it... she has it for good. She told me the story the other night of a friend in her class helping her with math. She said her friend stayed with her until she really got it so she didn't have to keep coming over to help. Ayden Jane was so appreciative of the help and I love that she felt totally comfortable asking.

Ayden Jane swims on a team with typical kids. Since her body does not develop lean muscle mass as well as typical kids, she again works very hard to keep up.  She likes working hard and says swimming makes her body feel good.

Ayden Jane plays soccer on a recreational soccer team. She has come a long way and I can say that by the end of this season, she is playing soccer - not just taking up space on the field. She can play on the team of typical kids but I don't think even all her striving has brought her to average on the field. She still loves it so we keep playing. She has been blessed with an amazing soccer coach who is so encouraging that Ayden Jane always feels like she did great.

Ayden Jane loves to set goals and achieve them. Whether this is because she has had therapies all her life with goals to achieve and a cheer leading section at the ready for each little accomplishment or if it is her innate personality I'll never know. We use this to her advantage though, like her mission to run the 5k

So as 'the mom' I watch all of this take place. I am so proud of all her hard work and the confident, independent little spirit. The giant smile she starts the day with and her giving, kind nature.

However, as 'the mom,' my heart also hurts for her. She has Prader Willi Syndrome and because of that she is different. She lives by different rules. Life is harder. Making friends is harder. Being good at things is harder. I wonder when she is going to get tired of the fight, frustrated that every second of every day she has to work harder. I wonder when the words "it's not fair" will come pouring forth from her and the sadness I feel at times for her will be inside her. I hope that the other girls at school think to include her from time to time. There's a difference between not being excluded and truly being included.

The good news is that as Ayden Jane gets older and we continue to learn how to help her manage PWS and as the research advances, she blends in as just a typical kid more and more.

I suppose it will always be hard on my heart. It is hard to let her plunge into situations I am not sure she can handle. Hard to watch her figure out the social jungle that is childhood. Oh, the momma heart... Ayden Jane you make it so full of pride and fear and worry and amazement. We all have a lot to learn from how you live life.

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