tag:blogger.com,1999:blog-5538519583031442151.post9223151972713920680..comments2023-05-31T07:38:46.210-07:00Comments on It's All About Me: Normies Don't Get ItBeckyhttp://www.blogger.com/profile/10142090423235200822noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-5538519583031442151.post-89125288684011873782013-01-04T23:26:34.698-08:002013-01-04T23:26:34.698-08:00I think it's an essential difference between b...I think it's an essential difference between being a Mom and being a person dealing with a disability. A Mom never stops hoping for the world for their children. A person with a disability has to learn to accept their limitations and shape their hopes and their world around what is possible based on those limitations.<br /><br />For me, the idea of having a home designed with my needs in mind seems just as much of a magical "someday" as the idea of me being totally well does to my mom. Both are just a dream at the moment, but the accessible housing can be done. Scientists are working on it, but really good, affordable, mild side effect meds aren't looking too promising in my lifetime.Beckyhttps://www.blogger.com/profile/10142090423235200822noreply@blogger.comtag:blogger.com,1999:blog-5538519583031442151.post-11949273687242616562013-01-04T02:29:08.704-08:002013-01-04T02:29:08.704-08:00When we have our Big Time Meet Up, I'll hug yo...When we have our Big Time Meet Up, I'll hug you, gently, because you are so tremendously special to me. But I have to repeat, or echo, what Karen said above. I went into major Mom mode when I read this. Babe, all we want for our kids (and that includes ones we didn't even give birth to) is for them to be happy and pain-free. We can hope hugely, well beyond your wildest dreams, we truly can. <br /><br />On the other hand, I have no clue how difficult this must be or what discomforts you must go through, so all I can offer is my unconditional support, love, and friendship (plus the added occasional conversations with my husband on the tweeties).<br />Juliehttp://urthalun.com/noreply@blogger.comtag:blogger.com,1999:blog-5538519583031442151.post-90364205135851405882013-01-03T06:00:58.293-08:002013-01-03T06:00:58.293-08:00When I read this, for some reason, maybe because I...When I read this, for some reason, maybe because I'm dealing with teen-age angst and pain right now that I can't fix, I identified with your mother. There is nothing more painful than watching your child hurt and not being able to help or to fix it. I would perform open heart surgery on myself if it would help my kids. Really. What she is doing is hoping desperately that someday, somehow, you will be healthy and able to do anything. If she admits to your limitations, it feels like she is giving in and giving up hope. And I promise you, we can hope far more desperately with far less to hold on to for our children than we can for ourselves. So while some of her unwillingness to accept limitations for you may come from the inability for a "norm" to understand what living with a chronic illness is, it very well may be more a mother's desire for her child to be well and healthy. From your perspective, this may not be particularly helpful or it may even be the opposite of helpful. I don't know. I do know that it is rare for someone to really "get it" about someone else's chronic problem - whether it is physical, mental or emotional - unless they have been in those shoes. The closest they can come is a willingness to try to understand and an ability to relate it to problems that they have had. We all have limitations, one way or another, and we all need to try to be understanding and gentle with each other. And now I'm lecturing. Sorry. KarenB (Betty Bear)http://karenb1963.wordpress.com/noreply@blogger.comtag:blogger.com,1999:blog-5538519583031442151.post-15340219316849006772013-01-02T15:54:20.994-08:002013-01-02T15:54:20.994-08:00I had a therapist once who tried to get me to &quo...I had a therapist once who tried to get me to "hope big". She pushed so hard that I had the only panic/terror attack in have ever had in therapy. Full on fetal position terror. Hope is f-ingredients dangerous when you are dealing with ongoing ick, whether it is medical or situational. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5538519583031442151.post-3561848483235619162013-01-02T15:48:09.689-08:002013-01-02T15:48:09.689-08:00*hugs*
Normal, healthy people really don't g...*hugs* <br /><br />Normal, healthy people really don't get it. I've had severe chronic asthma for years and my family still doesn't get it. It's a different mindset, a different way of thinking. Your mom means well but she can't truly understand your physical problems nor your emotional needs. Baby steps are all we can do some days.Beahttps://www.blogger.com/profile/17455117466213636141noreply@blogger.com