Monday, December 14, 2015


Something about the holidays makes people feel the need to surround life with treats. We all know this. Before Ayden Jane, I knew this as it played out in wired kids, strung out on holiday treats. I knew that the school parties, church 'Happy Birthday Jesus" celebrations and visits to friends all were chocolate laden. It just came with the season and although I knew it wasn't the best health wise, I totally caved into it. It was a part of my childhood and it was just part of how holidays are celebrated. Right?

Now that I have Ayden Jane in the picture my view is much different. Ayden Jane does not understand the big deal around treats and she makes me realize just how much junk is handed out. We do not deal with nearly the amount of stress many families with Prader Willi Syndrome must deal with because Ayden Jane does not have the classic PWS hunger. I can tell the constant treat train is getting to her though.

Here a a couple stories that show just how much junk is around and a part of this time of year, how amazing Ayden Jane is and the stress that all the excitement about treats adds to her.

First up, last Saturday Ayden Jane participated in our church Christmas program. She loves being up front and being a part of pretty much anything. It's a pretty amazing production and they had an afternoon and an evening show to do which required a lot of hang out time, food decisions ect. I have to say Ayden Jane did great and all was awesome. I went to pick get her after she had finished her part so we could get home at a reasonable hour and the room of kids were all set to have pizza and donuts. Ayden Jane was leaving and not worried about the food but her leader was so proud of the kids and she wanted to let AJ know so she gave her 2 of the dark chocolates we have stashed there. Honestly, my first thought was, oh crap! We haven't eaten well as it is today and she does not need that before bed. Before I could even say anything to Ayden Jane she looked at me and said, "mom, I think 2 is too much. How about I eat one now and save the other for tomorrow." Great choice!!

Then she came home from school today with a note written by a classmate in her folder. It reads - Dear Ayden Jane, I hope people treat you better. I know it is hard being you. I'll bring you something special someday. Sincerely, L

Wow. I'm sure your mind is going all the places mine went. I asked Ayden Jane about it and she was reluctant to talk about it. Finally she danced around the event and as best as I can gather, another student brought in some treats and was sharing with the other kids. Something must have been said or done because the note was from a girl who felt it was unjust that treats were brought and given to friends and nothing was brought for AJ.

The funny thing is that Ayden Jane was most frustrated that L was determined that it was a big deal. Ayden Jane just kept saying that it wasn't a big deal and L just wouldn't believe her and leave it alone. I think the well meaning friend was just reminding her and everyone else that Ayden Jane is different and that bothered Ayden Jane way more than not getting a treat that she didn't even care about.

I let it go at that for now and we headed off to Mckenna's chorus program. Of course when we got there they were handing out candy canes. Ayden Jane starts with 'no thank you' and the well meaning person probes her as to why....  Again, I'm different must be booming in her head.

When we were home she asked Gary to read her book Gordy and the Magic Diet before bed. I think she needed to hear about other kids that are actually like her.

So in the end I am so very sad for Ayden Jane because all the holiday crap reminds her she has PWS and she would much rather go about her business in spite of that. But I am also incredibly thankful that Ayden Jane is not interested in actually eating the Holiday treats all around and is not bothered terribly about them. I am also thankful that there are L's in the world who want to fight for Ayden Jane. Of course, I wish that the pressure to eat treats in order to have a great holiday would evaporate and that people would realize that for Ayden Jane, food is just fuel. She'd rather you give her a hug and share a story with her than explain ... again... that the treat you are giving her is not in the least necessary and likely is just stressing her out. She knows there are too many, even if they are things she can have.

She is such an old soul for an 8 year old kid. In the end, she has us all beat. You see for Ayden Jane, spreading good cheer and giving gifts and the birth of Jesus and decorating your home and catching up with family ... don't require candy. They simply require a smile that shows the joy and wonder of the season. 

No comments:

Post a Comment