Friday, December 30, 2011

Prader-willi syndrome

I saw this on my facebook tonight and I'm going to try and post a link - Prader-Willi Syndrome Awareness . Today I had a bad afternoon. Why? Well to start out with a haircut gone wayyyy to short. Then my son A~man threw a humdinger of a rage/tantrum. Let's see....bad haircut/VS the struggle of always being hungry,always wanting more (of whatever), always wanting to feel control when your little world is out of control. Add in a splash of autism and adhd. Sheesh....give me the crummy mama award for today seriously. Seeing this list that this other young man with PWS posted puts things completely in perspective.

Could you give up the things on this list?


  1. Honey, you get a great Momma award. I'm sorry about the haircut (you? Z? A? DH?). I've been there and it's a lousy place to be when you go in expected to come out all refreshed and happy with a new 'do' and instead you feel like they hacked away just to be mean. Hugs.

    I'm not on FB, so I didn't try the link, but I know some of what A deals with on a daily basis and here's how I know you ARE a great Mom.....that young man KNOWS love, KNOWS Jesus and KNOWS family. It's not fair, the things he has to deal with and that you have to limit to keep him healthy, but he DOES know you do it out of love and in his best interest. He can act out of frustration with you because he knows you understand, you do your best to help him AND, no matter what, you love him to bits.

  2. Yeah it was MY haircut. :( A~wouldn't be bothered by a bad haircute and DH? well he doesn't have hair heehee. (except on his face now;) You are so sweet Tina. Your kind words made me smile. Oh and the good thing about hair is it grows. Part of it was the way the lady styled it. It looked like a helmet. :( So after fixing it myself it still is too short but keeping it curly (instead of blow drying it) looks MUCH better!