tag:blogger.com,1999:blog-1448355842093887606.post149793753022901949..comments2023-05-13T03:15:08.400-07:00Comments on Maggie World: Channeling ArethaMaggie Worldhttp://www.blogger.com/profile/12578683202372124444noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-1448355842093887606.post-22934814096589888092010-10-29T15:20:46.100-07:002010-10-29T15:20:46.100-07:00It's an important, complex and in some ways su...It's an important, complex and in some ways subtle subject. Having been at this almost three decades now, I no longer wonder at the lack of knowledgeable respect. The worn truism that people who haven't walked this path simply don't get it stubbornly endures and proves itself over and over. I have family members and friends who are sharp observers, but since I'm usually under the obligation to make things look easier than they are---partly to avoid any unspoken messages to my daughter that she is a burden---and since observing is very different from experiencing, they don't get it either and truly respect neither her work nor mine, compared to how status is accorded in the NT world. I in turn don't really respect their lack of understanding, despite knowing I'd be the same or worse if I were on the outside of this situation. Even the extension of deep and true courtesy from the world at large would be an improvement, one I can sincerely return in kind. And real courtesy includes attentiveness to truth that doesn't have to be <br />distorted into "Fine" or dismissed as stress.Ahttps://www.blogger.com/profile/02307534252847118376noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-74767729397971153882010-10-29T01:18:36.842-07:002010-10-29T01:18:36.842-07:00Here from Elizabeth, and throwing out my good vibe...Here from Elizabeth, and throwing out my good vibes your way.Maggie Mayhttps://www.blogger.com/profile/14699674732274478502noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-63066283592279788552010-10-28T19:02:47.358-07:002010-10-28T19:02:47.358-07:00Well said, very well said.Well said, very well said.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-68211323972924450012010-10-28T16:08:55.059-07:002010-10-28T16:08:55.059-07:00Visiting from Elizabeth's.
I completely get i...Visiting from Elizabeth's. <br />I completely get it. <br />Well done.cheatymoonhttps://www.blogger.com/profile/06328903955238115971noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-11896273666117626742010-10-28T13:25:45.173-07:002010-10-28T13:25:45.173-07:00So true. I love the people that ask "How is ...So true. I love the people that ask "How is Emily doing?" and then when I say "Fine" because it's easy, they nod. Yes, I thought so. She looks great, look - she's even smiling.<br /><br />The girl smiles in between seizures. In between gagging/retching/puking fits. In between her 28 doses of medications, 6 catheterizations, and 5 tube-feeds a day. <br /><br />She's fine. And if you EVEN tell me you undertand, I must be stressed, how do you ever do it ... I will just smile and nod and walk away. :)ANewKindOfPerfecthttps://www.blogger.com/profile/11978293330074662766noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-44105591030518547702010-10-28T13:21:00.595-07:002010-10-28T13:21:00.595-07:00Fantastic post Sally. You say it all so well, and ...Fantastic post Sally. You say it all so well, and respectfully. I'm sorry for the comments, pity and platitudes that have accumulated over the years. Good luck to you and Maggie tomorrow -- I was so sad to read that she's missing the Halloween festivities.Maryhttps://www.blogger.com/profile/11399324383367077919noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-22206948912446462002010-10-27T21:28:26.355-07:002010-10-27T21:28:26.355-07:00Amen and well said. Thank you, thank you!Amen and well said. Thank you, thank you!Carlahttps://www.blogger.com/profile/13409870421816856319noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-12711385832992098452010-10-27T20:45:48.989-07:002010-10-27T20:45:48.989-07:00I love this post. I think it needs to go on the Ho...I love this post. I think it needs to go on the Hopeful Parents website. I also want to refer people to it on my own blog. Would that be all right with you?Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-54335844184992774482010-10-27T20:10:34.415-07:002010-10-27T20:10:34.415-07:00Sally---having worked in Rehab for so long, I have...Sally---having worked in Rehab for so long, I have a probably better-than-most idea of both the work involved in the day-to-day life and the joys of it for you, Maggie, and the rest of your family. I have the utmost respect for all of you and your amazingly positive ways. I apologize if I have ever said or done anything to make you feel otherwise. Yours is an incredible, loving, wonderful family. Thank you for sharing with us.Vickinoreply@blogger.comtag:blogger.com,1999:blog-1448355842093887606.post-28013779147733309362010-10-27T20:07:33.134-07:002010-10-27T20:07:33.134-07:00Sing it, sister! You speak the truth for so many ...Sing it, sister! You speak the truth for so many of us parents. Others never really want us to answer their questions. My all time "favorite"question is "How is Alison? Fine?". Someday when another well-meaning person who is unable to deal with our life story asks me that question followed by "Fine." I am going to tell them that clearly the conversation is over as they have answered their own question. So many can't bear any answer except "Fine"<br />So, fine we must be!Anonymousnoreply@blogger.com