tag:blogger.com,1999:blog-7724240753996495771.post5701605286062785862..comments2023-10-30T04:46:20.381-07:00Comments on THE BLONDE LEADING THE BLIND: If Only It Were Just Blindnessamber and jameshttp://www.blogger.com/profile/07456309985592637429noreply@blogger.comBlogger2125tag:blogger.com,1999:blog-7724240753996495771.post-44030804702381031812009-10-12T16:54:05.301-07:002009-10-12T16:54:05.301-07:00Cecelia,
You're right that I write these post...Cecelia,<br /><br />You're right that I write these posts partly to get this frustration off my chest. But I also do it because of our "true nature to hold things in and not share." I blog in several other places. And the reason I blog is to foster community and form places for people to come and know that they are not alone. Because as you said, "This can be detrimental to our mental health as well as ultimately helping others to see what we need." I'm all about raising awareness. And that's not gonna happen if I keep my mouth shut.<br /><br />Secondly, you're right that the people who send us these bits and pieces of information absolutely mean well. And I do realize that. Perhaps I should have mitigated my criticism of their efforts. I certainly want to foster understanding, not make people feel like I have a chip on my shoulder and scare them away from asking me more questions about my son's condition.<br /><br />Thirdly, thank you so much for sharing more information about your grandson's condition. I would be truly terrified to try and live with the uncertainty that comes with his health problems right now.<br /><br />Perhaps you could do a post on your own fears and frustrations?<br /><br />Lastly, thank you for your kind thoughts. It's good to know I'm not alone and hearing from other people helps me put things in perspective. I truly appreciate that.Lessiehttps://www.blogger.com/profile/10741982738892350097noreply@blogger.comtag:blogger.com,1999:blog-7724240753996495771.post-41906643031008315672009-10-12T07:16:03.361-07:002009-10-12T07:16:03.361-07:00You brought up a crucial fact. Only those disabili...You brought up a crucial fact. Only those disabilites we can "see" are the ones that are real to us (the average person). Have you ever saw someone park in a "handicapped parking spot" and they appeared perfectly healthy? Our instant reaction is to think critically in our heads. Only when we know the facts do we realize that our judgement was wrong. <br /> <br />I find that relatives and friends alike try hard to help our children. Their intentions are good - but sometimes they don't realize the full picture. Sometimes we don't share the full picture with them because it is too hurtful for us to talk about.<br /> <br />I agree, that there are alot worse conditions than blindness - especially those that can reduce our child's life span or create safety issues for our child. Sometimes just expressing our feelings to others about our concerns will help them understand. Easier said than done I know.<br /> <br />Sometimes in restraunts when you hear someone criticizing your child's behavior and you know he is in pain because of a health issue- the correct thing I guess would be to tell them that there are underlying conditions - not just the spoiled child syndrome. It's easier to glare at them and hold it in. Unfortunately when we do this, we stew about it for quite a while and the person is still ignorant of the truth. I bet they would apologize all over if a simple explanation was given. <br /> <br />Our true nature is to hold things in and not share. This can be detrimental to our mental health as well as ultimately helping others to see what we need.<br /> <br />By reaching out to us tonight, it shows that you really want to get this off your chest and feel a resolution.<br /> <br />My 3 year old grandson has undergone genetic testing since he was 6 months. He has an "unknown syndrome." Do you know the feeling that that entails? It is scary, frightening, like waiting for the next shoe to drop. Is the syndrome going to end up being fatal... or a mild one? Will he be cognitively impaired or not? And on and on.....<br /> <br />He was born with Cortical Vision Impairment - the least of my worries when it comes to this "unknown syndrome". And try looking up syndromes on the internet to self -diagnose and you drive yourself crazy. The other symptoms are the scariest- you are correct. Like last December - was he going to survive his heart surgery???? Witnessing a young girl die while he was there almost sent me over the edge. I cried for a long time over the girl and her family. A lady came over to comfort me, and when I told her why I was crying, she said she was the girl's grandma. I think she was touched that I cared so much for their feelings. All I can say is that I know how I would feel if that were mine. He did make it through - only to find out he will eventually need another heart operation. <br /> <br />Yes, Lessie, you are so correct. Other things do precede the sight - but just know that people try their best, and yes, they do have tunnel vision at times.<br /> <br />How do I cope? I think of what Jesus said -<br /> <br />Matthew 6:34 Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.<br /> <br />I live and try to visualize my grandson a healthy adult and doing things like other people do. I try and set worry aside and help him live life to the fullest. Of course, that is easier said than done at times.<br /> <br />My prayers are for you and your family, and I send an extra special prayer to Gareth.<br /> <br />Sincerely,<br />Cecelia LewisAnonymousnoreply@blogger.com