tag:blogger.com,1999:blog-4863417462909147257.post824834970225228610..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: The Road TakenElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger25125tag:blogger.com,1999:blog-4863417462909147257.post-4822784636053718782012-04-18T12:44:18.582-07:002012-04-18T12:44:18.582-07:00The word epilepsy is one that tends to be lost and...The word epilepsy is one that tends to be lost and isolated in dark and hollow caves. No matter how hard we claw out, it seems only a matter of time before we're back in those empty, desperate, caverns begging for more light.Ajaxhttps://www.blogger.com/profile/15272210468592329126noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-31817756758936897532010-01-02T17:50:29.335-08:002010-01-02T17:50:29.335-08:00You articulate what is so hard about motherhood wh...You articulate what is so hard about motherhood when things arent 'typical.' I can relate to much of your conflict, though to a lesser degree. you SHOULD never get used to it. And what struck me in reading this post is that I never SHOULD get used to this either: but I have. And it sickens me...Alicia Dhttps://www.blogger.com/profile/06244714478310893367noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-592407959537729412010-01-01T18:20:43.914-08:002010-01-01T18:20:43.914-08:00How could you ever get used to it? It sounds as if...How could you ever get used to it? It sounds as if it goes against everything in you, but so does Sophie's continued suffering. As a mother, we will try ANYTHING to ease our child's suffering, our family's suffering. <br />I can feel your love and passion and fatigue in your words. I am sending love and postive energy to you.Gbergerhttps://www.blogger.com/profile/08895779471612397202noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-78510478078036169962009-12-31T18:27:23.169-08:002009-12-31T18:27:23.169-08:00Well, you speak doubly for me on the crappy health...Well, you speak doubly for me on the crappy health reform we're getting. <br /><br />All we can do is hang in there, I guess. I am willing it for you to be OK--not that I am magic or anything, but on the off chance it does any good. Stay strong.jeneva22https://www.blogger.com/profile/14796890614666454443noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-27798592530545019242009-12-30T20:06:57.643-08:002009-12-30T20:06:57.643-08:00This froze me. I am new here.
Your writing, your s...This froze me. I am new here.<br />Your writing, your strength, everything here, just bowled me over. I hope too the pills help.<br />My gosh. I'm speechless but didn't want to read and pause for so long and then say nothing.Bethanyhttps://www.blogger.com/profile/03510823788662848522noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-12358780938000661102009-12-30T16:25:33.508-08:002009-12-30T16:25:33.508-08:00jesus woman. that is heart wrenching. i can't ...jesus woman. that is heart wrenching. i can't even begin to know that cave but you bring me closest with your stunning writing. even through this hideous anguish and fear, your spirit and strength and fierce insistence for more, for your sweet sophie, comes through. so moving. and awful.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-74276415280447228572009-12-30T12:54:30.113-08:002009-12-30T12:54:30.113-08:00I am keeping you all in my prayersI am keeping you all in my prayersTheresahttps://www.blogger.com/profile/08071740989565033354noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-80570708341683603992009-12-30T07:54:55.637-08:002009-12-30T07:54:55.637-08:00Beautiful writing about an excruciating part of yo...Beautiful writing about an excruciating part of your life. Thank you for sharing. It breaks my heart. We have had many discussions about meds around my house lately and there is not any good or easy answers. Strength with love is often the only thing that gets us through. Sending you both if it is possible!Cindahttps://www.blogger.com/profile/16094311567888874509noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-36901869690856451392009-12-29T17:46:53.753-08:002009-12-29T17:46:53.753-08:00You do it because you have to do something, becaus...You do it because you have to do something, because you're doing the best you can, because it hurts too much not to try. Because you love her in the best way, better than anyone else can.<br /><br />I'm hoping for the gift of stillness for both of you. And candles in your dark cave and light for Sophie.Kathleen Scotthttps://www.blogger.com/profile/10868566314392048880noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-50335173829396349442009-12-29T17:32:04.038-08:002009-12-29T17:32:04.038-08:00Just back from the mountains visiting family and c...Just back from the mountains visiting family and catching up on blogs. <br /><br />I hear you. I hear you. I hear you. I hate it. I hate it. I hate it. <br /><br />love, love, love, ChristyMystic Thistlehttps://www.blogger.com/profile/06174458059451015463noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-77888859992022896652009-12-29T16:59:53.682-08:002009-12-29T16:59:53.682-08:00I love how you can write so beautifully about some...I love how you can write so beautifully about something so ugly, and how you can be so sensitive and so strong at the same time. <br /><br />Sometimes it fries my brain to figure out which choice is bad and which one is worse. I'm sending you lots of love.erikahttps://www.blogger.com/profile/03048369118376287016noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-85520309618286621802009-12-29T06:57:04.212-08:002009-12-29T06:57:04.212-08:00I'm not sure what to say except you are doing ...I'm not sure what to say except you are doing what you know how to do. You can only try these things and if they work they work and if they don't you move on and try something new. I will just pray for God's strength for you and the wisdom to listen to your heart even when it's crying out in anguish. <br /><br />Sending love and peace today...Palmer and Cohttps://www.blogger.com/profile/14422412149238050696noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-37620964331686894082009-12-28T20:38:48.409-08:002009-12-28T20:38:48.409-08:00I have absolutely nothing to say. Except that you&...I have absolutely nothing to say. Except that you're breaking my heart. And that I send a huge cyber hug to both you and Sophie.gretchenhttps://www.blogger.com/profile/00952840544630534206noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-44185456558472192082009-12-28T19:39:45.479-08:002009-12-28T19:39:45.479-08:00Damn. I wish you and Sophie didn't have to go ...Damn. I wish you and Sophie didn't have to go through this...that you didn't have to endure those every morning seizures, and that you didn't have to go into that deep dark cave to get even the slightest chance of some short-lived relief. I really hope this little white pill will be different, and that if you do have to eventually wean that it won't be as hard as other times. And of course I am wishing that I could do something to help. Sending lots of love.Maryhttps://www.blogger.com/profile/11399324383367077919noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-81516829020870315352009-12-28T16:34:30.099-08:002009-12-28T16:34:30.099-08:00The thing nobody tells us when we're young, is...The thing nobody tells us when we're young, is that sometimes there are no good choices, it's only the lesser of two evils. I'm there with my mum right now, celebrex that have destroyed her kidneys or morphine that will make her confused and fall down. That's it. Die from kidney failure or die from a broken hip. Shitty choices indeed.<br /><br />Hope the pills help. Sending up a prayer to Mary for both you and Sophie.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-12792760726004010152009-12-28T15:20:01.285-08:002009-12-28T15:20:01.285-08:00I am so very sorry this is part of life for you an...I am so very sorry this is part of life for you and Sophie. I am praying that this pill is magic.Denise Emanuel Clemenhttps://www.blogger.com/profile/10982725113569943337noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-23363192488315502052009-12-28T12:28:26.939-08:002009-12-28T12:28:26.939-08:00Oh Elizabeth.
You are doing the very best you can...Oh Elizabeth.<br /><br />You are doing the very best you can. Sophie is doing the best that she can. It is all so hard and we cannot even fathom lying across our young daughter for 45 minutes. The exhaustion, I could picture it so well as you wrote it and it has broken my heart.<br /><br />You are a good mother and you are doing all you can and know how to do. You have no one to show you the way, there is only you.<br /><br />I would do whatever and try whatever too, what other choice do you have.<br /><br />I'm sorry Elizabeth that life is so hard, I'm sorry.<br /><br />Love Renee xoxoReneehttps://www.blogger.com/profile/11785932958464359112noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-21102867955610706982009-12-28T09:14:54.375-08:002009-12-28T09:14:54.375-08:00Hi Elizabeth! I apologize for taking so long to re...Hi Elizabeth! I apologize for taking so long to respond to you, but I wanted to have time to look at your blog and read about your beautiful Sophie. <br />Have you looked more into the CDKL5 testing? There is a pix of Spophie with her legs crossed and it seems like it is a picture we all have of our CDKL5 kids. The little ladies these kids are. This is my email knothdurft at gmail dot com email me and we can chat more. <br />Oh and btw my Lily was on the Clobzam study most 2008, it is soon to be fda approved so we won't have to deal with the pharmacy in Canada too much longer, same thing with Vigabitrine :) We've really had to mix and dose appropiately but it has helped our daughter. I'd love to hear how it goes with Sophie. Take care and hope to speak soon!Kimhttps://www.blogger.com/profile/10843935004255100802noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-60096989466419298872009-12-28T07:42:24.351-08:002009-12-28T07:42:24.351-08:00I want to hug you, make a latte, yell at the Unive...I want to hug you, make a latte, yell at the Universe "enough already" hold the Mermaid quietly in my arms and sing to her sweet nonsense songs, in other words: give you a break.<br /><br />Decisions are made by the pharmaceutical companies in case someone is still in the dark ages.<br />When in conversing with one radiation oncologist I asked why there hasn't been any research I was aware of since 2000 toward at least some form of help for those dying of Mesothelioma he looked at me straight in the eyes and said something akin to: "there is no money there for "them". They are not interested in financing trials that have no economic impacts."<br />Right, those are only lives and we know the price for lives these days.<br /><br />You are a brave and loving woman and I admire you because I am still in the dark about how you do it. Day in and day out. <br /><br />I am off to my chemo, although I tell you I wish I had the courage to say no. Some times we made decisions that affect others without much regard for our own personal cost. That I guess is the secret side of love.<br /><br />I too hope those damn pills help.A.Smithhttps://www.blogger.com/profile/06947308878002639964noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-17310290882581748672009-12-28T07:38:55.109-08:002009-12-28T07:38:55.109-08:00Brown eyes like pools.
Never get used to it, dea...Brown eyes like pools. <br /><br />Never get used to it, dear Elizabeth. But keep recreating it in your incredible prose and your steely soul. Sending holiday love. Also loved the pics posted yesterday. And the whole damn blog. Wish I'd been following it more closely all this time, it's amazing.Stephhttp://www.alifestill.comnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-67025365825187239282009-12-28T07:05:32.650-08:002009-12-28T07:05:32.650-08:00God,my heart aches for you Elizabeth. And my brain...God,my heart aches for you Elizabeth. And my brain.<br />How you have to find the sane line between the two. For your Sophie, for your family, for yourself.<br /><br /><br />sending little white pill hope prayers.<br /><br />I'm emailing you a picture of my niece who is here visiting from Florence. I was struck by how she looks like Sophie.Anonymoushttps://www.blogger.com/profile/15924061349390319473noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-88144360958198287252009-12-28T05:42:45.506-08:002009-12-28T05:42:45.506-08:00No. I cannot imagine. I cannot.
But I stand here ...No. I cannot imagine. I cannot. <br />But I stand here at the doorway you have opened and look in and I think, "This woman is braver than Jesus."<br />That's what I think. <br />And I'm with Maggie. I hope those damn pills help.Ms. Moonhttps://www.blogger.com/profile/09776404747858099919noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-13159369449622612972009-12-28T04:29:01.061-08:002009-12-28T04:29:01.061-08:00you are a goddess, elizabeth, and that is a tough ...you are a goddess, elizabeth, and that is a tough and lonely thing to be.<br /><br />light to you, even in the deepest recess of your cave. light to sophie.adriennehttp://adriennepatrick.typepad.com/my-blog/noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-76828972333376021902009-12-28T03:40:18.978-08:002009-12-28T03:40:18.978-08:00Oh, I so hear you...I'm looking at spinal surg...Oh, I so hear you...I'm looking at spinal surgery here...blech, blech, and blech to the whole thing...but it sounds beautiful when you write it. Much love to you.Clairehttps://www.blogger.com/profile/13070297384173508509noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-32409630933774803612009-12-28T00:51:28.060-08:002009-12-28T00:51:28.060-08:00You may not get used to it but you do it, you do w...You may not get used to it but you do it, you do what needs to be done, you wake and you deal with the siezures, crying or not, you do it, you don't run away physically or in any of the other ways people leave without leaving. You are doing a wonderful job. I hope those damn pills help.Maggie Mayhttps://www.blogger.com/profile/14699674732274478502noreply@blogger.com