tag:blogger.com,1999:blog-4863417462909147257.post4181334136785054382..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: How We Do It: Part ? in a Series Where I Call on the Hive MindElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-4863417462909147257.post-30071587826127977812017-10-21T13:43:09.539-07:002017-10-21T13:43:09.539-07:00Sophie's pre-seizure alertness is really inter...Sophie's pre-seizure alertness is really interesting as is your theory explaining it. I can't say C. is always very alert before a seizure but there certainly is never a trace of a warning. Consequently each one still blindsides me as if it's her first. The Sound of the Silenthttps://www.blogger.com/profile/09669598042879486343noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-76923750316451353072017-10-18T07:35:21.436-07:002017-10-18T07:35:21.436-07:00Yes. I’m taking her off the Clonidine. I think it ...Yes. I’m taking her off the Clonidine. I think it was adding fuel to fire.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-16908640729568563252017-10-18T07:34:33.324-07:002017-10-18T07:34:33.324-07:00❤️❤️Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-7266467596410764532017-10-18T07:34:18.296-07:002017-10-18T07:34:18.296-07:00Thank you so much. Our girls are fierce, no?Thank you so much. Our girls are fierce, no?Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-24295422785590691582017-10-18T07:33:39.986-07:002017-10-18T07:33:39.986-07:00Marylinn, yes, this is exactly what I need to do —...Marylinn, yes, this is exactly what I need to do — what has “worked” in my experience. Thank you for the reminder and affirmation!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-75013232802039665222017-10-18T07:32:08.987-07:002017-10-18T07:32:08.987-07:00And I appreciate it, Ken!And I appreciate it, Ken!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-35583924092502565622017-10-18T07:31:47.748-07:002017-10-18T07:31:47.748-07:00Thanks, Sabine. Thanks, Sabine. Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-40759395157001985992017-10-18T07:31:27.339-07:002017-10-18T07:31:27.339-07:00Thank you Bohemian!Thank you Bohemian!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-2711930981439478292017-10-18T07:31:05.339-07:002017-10-18T07:31:05.339-07:00Trying!Trying!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-13816523933506166932017-10-18T07:30:52.371-07:002017-10-18T07:30:52.371-07:00Thank you liv!Thank you liv!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-25286288401376865522017-10-18T07:30:31.121-07:002017-10-18T07:30:31.121-07:00Yes. Thank you Birdie, for your thoughtfulness.Yes. Thank you Birdie, for your thoughtfulness.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-13394555464805058792017-10-18T07:29:43.016-07:002017-10-18T07:29:43.016-07:00Yes. I believe that.Yes. I believe that.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-70979213491531944542017-10-18T07:29:24.603-07:002017-10-18T07:29:24.603-07:00Your bravery and grace inspire me.Your bravery and grace inspire me.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-16103725932625179432017-10-18T07:28:59.957-07:002017-10-18T07:28:59.957-07:00❤️❤️Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-62304759317798808832017-10-18T07:28:45.718-07:002017-10-18T07:28:45.718-07:00Yes. Thank you.Yes. Thank you.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-27728874509466045672017-10-18T07:28:14.233-07:002017-10-18T07:28:14.233-07:00Your grace in illness is so inspiring to me, Lesli...Your grace in illness is so inspiring to me, Leslie. May you be well, too!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-42603377437149314602017-10-18T07:27:24.556-07:002017-10-18T07:27:24.556-07:00Thank you Lily Cedar — I’ll keep you posted and I ...Thank you Lily Cedar — I’ll keep you posted and I so appreciate your wise input.Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-51860282312200669882017-10-18T07:26:31.514-07:002017-10-18T07:26:31.514-07:00Thank you Elisabeth —Thank you Elisabeth —Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-71893559146184814322017-10-18T07:26:06.856-07:002017-10-18T07:26:06.856-07:00Sophie doesn’t have a G-tube — I think about it. T...Sophie doesn’t have a G-tube — I think about it. Thanks for your input!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-45613642853766660782017-10-17T08:11:40.341-07:002017-10-17T08:11:40.341-07:00Is it possible to wean off the clonidine? use inst...Is it possible to wean off the clonidine? use instead as PRN? Epilepsy is horrible on every level. With the general decline we witness in our son, MRI showed nothing, but recent EEG was very bad, patterns consistent with lennox gastaut. <br />-Jennifer D.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-73110687434893106832017-10-16T11:12:09.374-07:002017-10-16T11:12:09.374-07:00I honestly don't know how you do it. Not a fu...I honestly don't know how you do it. Not a fucking clue. <br />Sending love.Tarahttps://www.blogger.com/profile/03052375488090209961noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-16657334648872426432017-10-15T13:07:36.508-07:002017-10-15T13:07:36.508-07:00I really do know first hand what you are going thr...I really do know first hand what you are going through. Especially the eating strike; C's eating strikes have come and gone periodically over the last four years or so. They are so, so frustrating, baffling and, at times, long (the last one lasted over a month). <br />But nothing is more hellish than the general deterioration. We had that when C. suffered liver damage from Valproic Acid last year. Everybody, including the doctors, was surprised when the liver repaired itself several months after removing that awful drug. The rest of her is still getting over the ordeal. <br />I truly hope Sophie surprises everyone too and recovers soon. The Sound of the Silenthttps://www.blogger.com/profile/09669598042879486343noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-50755980355006475272017-10-14T10:36:21.838-07:002017-10-14T10:36:21.838-07:00A form of PTSD, that makes sense. Trauma from so...A form of PTSD, that makes sense. Trauma from so many sources visits us over a lifetime and each new one stacks atop all the others. Here is the best I know for myself. (To compare situations is foolish, hopeless possibly, yet I believe there are universal truths.) In as much stillness as I can summon, and for as long a time, I allow my mind to grow quiet, giving intuition the chance to speak. It is a practice built over time and without the real-life crises you face daily. I have learned to act upon wisdom I can't explain and which often makes no sense. The noise that fills our lives silences that voice. Is the collective unconscious a version of hive mind? I only know, when given a chance, intuition has taken me where I would never have gone using what might pass for logic. If this is not the least bit helpful, I apologize. I do feel such love for you, for Sophie, for your wide-armed passion, I would do anything to make it better. Marylinn Kellyhttps://www.blogger.com/profile/02759437467691163658noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-3232716428000428482017-10-14T07:06:43.082-07:002017-10-14T07:06:43.082-07:00Wrote something. Decided it sucked. Deleted.
But ...Wrote something. Decided it sucked. Deleted.<br /><br />But commenting with an unhelpful something anyway just as a show of support and friendship.Kenneth Lillyhttps://www.blogger.com/profile/01026324400064140870noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-36952181063761238912017-10-14T01:23:13.483-07:002017-10-14T01:23:13.483-07:00First: Sophie looks stunning in that picture. So v...First: Sophie looks stunning in that picture. So very graceful. And maybe that is all there is, maybe she is the one saying, I can't do this anymore. <br />I feel for you. Your challenge and your responsibility is beyond my understanding and I wish I could take at least some of it from you.Sabinehttps://www.blogger.com/profile/09015827501648296977noreply@blogger.com