Tuesday, May 11, 2010
Prader-willi syndrome on ABC Extreme Makeover Home Edition
The show on Sunday night on ABC Extreme Makeover: Home Edition featured a family with a son who has the same disability is my 8 year old, Tressa. The name of the disability is Prader-willi syndrome. Although the show gave great exposure and some wonderful information it is the tip of the iceberg to what a day in the life with a child who is in the thick of this disability is like. I am thrilled at the public response to learning more and the media for taking it on to educate our country... Some times I can feel so alone, so beat up from this it feels defeating at times although the on line support from other PWS families is AMAZING, it is only on line... and crying on the keyboard of a laptop isn't the same as another Mother who truly understands where you are. It isn't every day by any means but the days when the disability has it's peaks and you are not at the top of your game...it is overwhelming. I do what I can to avoid but no matter how much I do it is never enough. If you watched the show: when the mom stated her fear of him eating that amount that would blow his stomach open and he would die...Yes, that fear is often. I have laid next to her after an eating episode where I prayed and prayed because there is nothing more you can do... She ate whole large fruit frozen pie and I had no idea if she would live through it.. I wasn't seeing signs of fever or distress and she can not vomit (it would kill her) so I laid and prayed. So when that mom shared that thought I knew right what she was feeling/saying.