tag:blogger.com,1999:blog-447392662850613354.post6535625549301129224..comments2024-02-25T10:24:30.868-05:00Comments on Special needs disability parenting BLOOM: No man's landBLOOM - Parenting Kids With Disabilitieshttp://www.blogger.com/profile/06901482901008135659noreply@blogger.comBlogger8125tag:blogger.com,1999:blog-447392662850613354.post-68893326518763205902009-10-31T16:14:27.657-04:002009-10-31T16:14:27.657-04:00I know no-man's land well.
I don't know i...I know no-man's land well. <br />I don't know if it is because of the time between our experience and yours, or if we are simply lucky to deal with doctors who believe in being very transparent, but from day one, doctors have been up-front with us about how little they know, so our expectations have been well-managed. But we have had those "holy shit" moments too, when we've made a suggestion to a top neurologist (or other specialty) and they have said "great idea, let's follow up on that" and it is both humbling and empowering at the same time.<br />Great article.Lloydhttps://www.blogger.com/profile/05775619032558054289noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-71581923414301581342009-10-19T17:22:30.775-04:002009-10-19T17:22:30.775-04:00Thank you for sharing this powerful and painful re...Thank you for sharing this powerful and painful realization! I've been trying to post all day but blogger wouldn't let me post at work.<br /><br />I am grateful to learn more about the experience of parenting a child with intractable seizures -- and humbled by it. I'm sure this will be an eye-opener for many BLOOM readers. <br /><br />Like Elizabeth W. said, I'm eagerly anticipating your book! <br /><br />Thanks again and cheers, LouiseBLOOM - Parenting Kids With Disabilitieshttps://www.blogger.com/profile/06901482901008135659noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-78963694991172905572009-10-18T22:46:31.250-04:002009-10-18T22:46:31.250-04:00Thanks for the comments, everyone! I so appreciate...Thanks for the comments, everyone! I so appreciate them.<br /><br />Elizabeth Westmark -- You are so sweet. Thank you, especially. And I sure do wish I could read some of your writing. I miss you a lot.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-38002646220035047042009-10-18T08:56:29.303-04:002009-10-18T08:56:29.303-04:00Elizabeth Aquino is the best writer I know. I read...Elizabeth Aquino is the best writer I know. I read her blog regularly. Thanks for re-publishing this essay. Someday, (soon, I expect), a reviewer's blurb on the cover of her yet-to-be-published book will use words like "searing honesty" and "this family could teach us all something about love."Bethhttps://www.blogger.com/profile/06579979064302832829noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-40201222907722266182009-10-17T18:01:32.745-04:002009-10-17T18:01:32.745-04:00Even though I'm a nurse and know how little do...Even though I'm a nurse and know how little doctors know, it still surprised me that we never got a diagnosis or a reason for Katie's handicap. She just is. It's what the medical community prefer we not know, that what doctors know is far outweighed by what they don't know. It's also what we as a society would prefer to not know, we want to believe that somewhere there are answers but sometimes there are just no answers. Human beings are often mysteries.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-53467930423888786772009-10-17T09:54:24.900-04:002009-10-17T09:54:24.900-04:00I have a long comment but I'll have to get bac...I have a long comment but I'll have to get back to it, Katie is sitting next to me, demanding my attention.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-61642201791834688922009-10-16T21:44:29.897-04:002009-10-16T21:44:29.897-04:00Great essay!Great essay!erikahttps://www.blogger.com/profile/03048369118376287016noreply@blogger.comtag:blogger.com,1999:blog-447392662850613354.post-12823981494103028102009-10-16T20:42:33.752-04:002009-10-16T20:42:33.752-04:00I know that no-man's land place. Thank you for...I know that no-man's land place. Thank you for this.Carrie Wilson Linkhttps://www.blogger.com/profile/01586157395539583862noreply@blogger.com