Monday, November 29, 2010

Does the "Gathered View" depress anyone else?

Mind you I'm a positive person - but I can't hardly bring myself to read that thing. The Gathered View is a newsletter put out by the PWSA- USA. Its bleak. Its "inspiring" stories are not inspiring. It just reinforces the sadness I felt when our baby was diagnosed and reminds those of us presently in the blissful hyperphagia free land of the food stealing horror to come.

A good chunk of it focuses on the money and who fundraises which I guess is a positive thing - but the other stuff in there is mostly, well bleak. I think in the early stages of diagnosis it was very helpful with the information it provided - but now I think I'm better off not reading that each month.


Sarah said...

yep, I hardly read it anymore. It's depressing!

Mary said...

I do know what you mean. When Oscar was little and the GV arrived in the mail I would spend the entire afternoon (or so it seemed)crying on the couch. Every article, even postive, uncovered some aspect of PWS that I had not considered and it was crushing.

Oscar is 10 now and I feel like the GV doesn't phase me nearly as much (or even at all) as it did when he was tiny. Back then I read it as a way to understand the disorder and the many ways it manifests and how people managed it with their kids of all ages. And I worked hard to remember that every single thing written (positive or negative) would not be true for Oscar, and that has indeed been the case. I do that the GV, along with conferences, online and personal connections with other families, helped me form an approach that worked for our family and kept me thinking about things to plan for. So much of what we have done has been preventative. (ie we instituted a lot of routine around food -- food security -- long before Oscar could consider foraging. The routine has always been in place and not something we did in response to any of his behavior. And, at 10, he's doing great in the food and behavior realm.) Does that many ANY sense? All that being said, I have no idea what's been in any of the recent issues. LOL.

Andrew,Sally,Megan,Daniel and Lucy said...

I say just dont read it!!
I expect you have all the information that you need for now so its not like being in denial.
I sail along just fine until I read or see something about pws that can bring me down for days
Its hard cos i expect like me you dont want to miss anything but I say allow yourself a break and just enjoy that yummy little boy cos he is doing great

Wendy said...

I can't read it anymore. It makes me absolutely crazy!! I am with you. It is supposed to be informative, but I think it is so sad. I get so depressed that I just trash it when I get it for the most part. My husband won't even pick it up. The things that are supposed to be positive or up-lifting are anything but. I find myself more upset and sad and with more things to worry about then prior to picking it up. I am also tired of it always having at least one death of someone that was rather young. I can't do it. Just my thoughts! Wendy

Laurie said...

I have to agree with all of you.
I won't read it anymore. Mostly I just trash it. It is truly depressing. They should have the option to "opt-out" of the magazine. They could then save that money and put it towards research or services.

I tried to just read it for the research info, but you can find that on FPWR and facebook now.

Laurie said...

I've never read the magazine, but I know exactly what you mean. There is only so much I want to know right now. I want to enjoy her as much as I can right now - she is in the "normal baby" stage and I can sort of pretend this is as bad as it is going to get. Not realistic, but certainly livable.