tag:blogger.com,1999:blog-4863417462909147257.post5447167077561287352..comments2024-01-01T20:33:52.554-08:00Comments on a moon, worn as if it had been a shell: How We Do It -- Part I in an ongoing seriesElizabethhttp://www.blogger.com/profile/03313726816776097840noreply@blogger.comBlogger33125tag:blogger.com,1999:blog-4863417462909147257.post-52837329413563510632011-09-02T09:53:45.915-07:002011-09-02T09:53:45.915-07:00That last comment by Henry is why we love the kid ...That last comment by Henry is why we love the kid so much.Michaelhttps://www.blogger.com/profile/10961112811113248428noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-46729801647709073332011-08-29T17:08:22.114-07:002011-08-29T17:08:22.114-07:00Loved this post. The day to day stuff is so impor...Loved this post. The day to day stuff is so important.<br /><br />And as the parent of a kid with a different disability, I wanted to agree with the point that I can and do pick up on the vibes from other people that are supportive, as opposed to the pity/hostility/sideshow vibes. When a person sees someone with a disability as a whole human being, that vibe comes through.Alison Piepmeierhttps://www.blogger.com/profile/17972854288403934814noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-71058043915770148212011-08-26T20:55:25.412-07:002011-08-26T20:55:25.412-07:00The things I take for granted .... And the things ...The things I take for granted .... And the things I bitch and moan about .... It's embarrassing. <br /><br />Thank you for sharing. I need to know how it is.Anonymoushttps://www.blogger.com/profile/10818795902981871173noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-23636243817792931682011-08-25T15:51:52.540-07:002011-08-25T15:51:52.540-07:00I love it when parents of special kids post about ...I love it when parents of special kids post about their average days like this one as no one has a clue how difficult it is to run a simple errand or eat out or do anything that everyone else takes for granted. I have 3 Sophie's and there are days when I'd rather shoot myself in the head than go through the errand torture. Sophie....one of these days I'm going to follow your lead and get the courage to drop to the floor in a store and hum....You have the right idea and the rest of us are doing it all wrong.SECRET PEPPER PERSON:https://www.blogger.com/profile/06434583043459305729noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-65438216551009927182011-08-25T13:02:12.739-07:002011-08-25T13:02:12.739-07:00I LOVE Henry. And I really loved this piece. I oft...I LOVE Henry. And I really loved this piece. I often wonder how people with disabilities "do it". I suspect that this series you're starting will be eye opening. You amaze me. And you deeply deserve a night out with the girls. Let me know.gretchenhttps://www.blogger.com/profile/00952840544630534206noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-83977612865459246932011-08-25T11:00:56.853-07:002011-08-25T11:00:56.853-07:00this is writing that wraps around your chest and d...this is writing that wraps around your chest and doesn't let go. it is aching and loving, both emotions entwined, and thank you for sharing how you do it. i believe your boys are profoundly more aware, more tender, more capable, more compassionate because of sophie, and the way you are with her. they follow your old soul lead. you are an extraordinary soul, dear elizabeth. a powerhouse of a mother. you get it done. and i wish somehow i could hold you up while you hold everyone else up. <br /><br />and is this part of that book you are writing? it definitely should be. such love.37paddingtonhttps://www.blogger.com/profile/12400464105403622384noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-55030560020280580232011-08-25T08:03:21.333-07:002011-08-25T08:03:21.333-07:00I love the way you do it. Not because of the detai...I love the way you do it. Not because of the details or specifics, but because you've worked it out with love and compassion and an understanding of what your limits are without disregarding Henry's or Sophie's or anyone else's (in your family - screw anyone else's limits).<br /><br />And I love Henry's ability to see the complicated and the simple all in one. My heart melted. <br /><br />Love.kariohttps://www.blogger.com/profile/10150537989886423212noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-72171154265896102822011-08-25T07:10:44.125-07:002011-08-25T07:10:44.125-07:00I love Henry's honesty...
and I also want to ...I love Henry's honesty...<br /><br />and I also want to echo what everyone else has said: thank you for sharing your life with us, for your brutally honest writing and loving heart. You've enriched the world this way. xoxoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-58127685142565431882011-08-25T07:06:52.369-07:002011-08-25T07:06:52.369-07:00henry, henry, henry.
the icing on all our cakes.
...henry, henry, henry.<br />the icing on all our cakes.<br /><br /><br />i love you elizabeth.<br />and all your children.rebeccahttps://www.blogger.com/profile/05265802752790310923noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-37290888090458516682011-08-25T05:10:51.416-07:002011-08-25T05:10:51.416-07:00I absolutely love what Henry said. Amazing kid. An...I absolutely love what Henry said. Amazing kid. And you? How lucky we all are to have you shed light, to offer a glimpse into your day. To remind us that a smile and a kind word is sometimes enough. Beautiful post.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-26874677879657116732011-08-24T22:30:12.289-07:002011-08-24T22:30:12.289-07:00I wrote how I don't know that there is another...I wrote how I don't know that there is another way of doing it, but you're doing all there is to do, and more.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-64727764427648496062011-08-24T22:27:34.757-07:002011-08-24T22:27:34.757-07:00I don't know where my comment went, is it ther...I don't know where my comment went, is it there somewhere??Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-52386492587886658622011-08-24T21:54:54.321-07:002011-08-24T21:54:54.321-07:00Elizabeth, I keep reading this post, leaving, and ...Elizabeth, I keep reading this post, leaving, and coming back because i don't have the right words for you. Thank you for the words you give us, and for allowing us to witness the spectrum of your life. If only our thoughts could/would help you. Know that every time I come across a mermaid poem in my "research", I think of Sophie, you, and the whole family.<br />Love.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-7857081942306524842011-08-24T20:43:39.970-07:002011-08-24T20:43:39.970-07:00Sometimes when a day seems particularly difficult,...Sometimes when a day seems particularly difficult, I like to imagine that my blog friends are with me, helping me get through the day emotionally. And on my easier days, I imagine myself reciprocating. That's how I do it. xoxoTanya Savkohttps://www.blogger.com/profile/15296300747016479200noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-36580439423445689452011-08-24T20:10:30.136-07:002011-08-24T20:10:30.136-07:00That's what used to grind me down the most. E...That's what used to grind me down the most. Even now it still does. I work mon-fri now and every other weekend I have Katie so she gets to go on my errands with me except she hates going on errands now. She only wants to do what she wants to do. <br /><br />The part I hate most with Katie is the crowds and lineups. I have to be so careful that she doesn't pull anybody's hair. She gets this look on her face and I can tell.<br /><br />Feeling your pain.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-13632784797236715352011-08-24T18:03:37.959-07:002011-08-24T18:03:37.959-07:00Oh!
Dear God!
Elizabeth! I , I ... I just do know...Oh! <br />Dear God!<br />Elizabeth! I , I ... I just do know what to say except that I am so sorry for always trying to run my mouth all over your blog and then some. I often forget exactly just how much a mother has to endure, not realizing that just because you're not screaming at me alternating looks that are hard to tell by your facial expression whether or not you aren't not lost in lost in the enjoyment of sharing yourself with the moment, OR that frozen lifeless look really means you are at your wits end and are just about to explode. <br /><br />Releasing what can only be heard as anger as it is accompanied with expletives and taking the Lord's name in vain for which I have felt responsible for in the past because all too often my name is also mentioned as if it rolled off my very own tongue.<br /><br />I am hoping you can forgive me for all I might have put you through. And I promise, if I could just have one more chance, I promise I will get it in right this time or else die tryingwhohttps://www.blogger.com/profile/17685473418191606910noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-32689587207191405352011-08-24T17:52:37.981-07:002011-08-24T17:52:37.981-07:00I have learned much from your blog Elizabeth but t...I have learned much from your blog Elizabeth but today I felt and learned. You shared what for you, is a day in and day out ritual of life. <br /><br />So different from mine but what is common is being a mom and loving our children heart and soul.Ellenhttps://www.blogger.com/profile/00912709342270151365noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-58174542653393059162011-08-24T17:12:34.404-07:002011-08-24T17:12:34.404-07:00Elizabeth
I now follow your wonderful and insight...Elizabeth<br /><br />I now follow your wonderful and insightful blog on a regular basis. I accessed it through facebook. You are such an inspiration to me and I admire your strength. Your insight on life with Sophie is so moving. I appreciate the time you take to share your thoughts because it gives me strength to deal with my little day to day issues. My prayers are with your family.<br />Becky McGinnis KingBecky Kinghttps://www.blogger.com/profile/00026498509418488948noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-6640831310804719962011-08-24T17:06:04.688-07:002011-08-24T17:06:04.688-07:00I feel frustrated when I read certain posts and th...I feel frustrated when I read certain posts and there is just nothing to say. Nothing. I want to help you. I want to give you words that are meaningful but as far as I know, those words do not exist in your world.<br />Having a special needs child changes your world in every way. You look back on the person you were before and concentrate hard but she is not there. Your morals, values and ethics even change. How can that be? Are these things not solid? Apparently they are fluid.Birdiehttps://www.blogger.com/profile/03479872783727855901noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-31650642698323928642011-08-24T16:59:57.212-07:002011-08-24T16:59:57.212-07:00The strangest part of it all is this: my son's...The strangest part of it all is this: my son's disabilities are completely different from Sophie's, but I understand everything you've said here. <br /><br />My other kids have asked occasionally, "Don't you think it would be better if Carter was a regular kid?" I always trip over the answer. I'm afraid to give voice to my real thoughts and feelings about that.Adrienne Joneshttps://www.blogger.com/profile/04409214910585358139noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-66078595733478945112011-08-24T16:40:36.581-07:002011-08-24T16:40:36.581-07:00well, you may FEEL edgy, but i think you LIVE with...well, you may FEEL edgy, but i think you LIVE with much grace. and i love what henry said...Lesliehttps://www.blogger.com/profile/01221703763145912238noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-18693249742288683422011-08-24T15:35:11.309-07:002011-08-24T15:35:11.309-07:00I love this post and it's eerie familiarity, I...I love this post and it's eerie familiarity, I like the exposure of the everyday, and may steal this idea shamelessly for the blog :DSelenehttps://www.blogger.com/profile/16906565055142387639noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-26958115352647393992011-08-24T14:24:58.173-07:002011-08-24T14:24:58.173-07:00Wow. I can't even begin to say how much I appr...Wow. I can't even begin to say how much I appreciate you writing this post. My daughter (who is 6) has seizures similar to your Sophie. Not only do I appreciate your posting this, I can absolutely relate. My daughter is "non-ambulatory" and confined to her wheelchair. We don't have a lift/ramp in our van and so taking her anywhere requires us to lift her chair in and out of the van and transfer her to and from her carseat. This makes a quick run to the grocery store or anywhere a hassle. I can't wait until my oldest son is mature enough to sit in the car with the her ... <br /><br />As for other people's reactions to her (and her odd noises/yelling/crying/moaning), somedays it is easier to ignore the gawkers than others. Most of the time I can ignore it ... tho if an adult is open mouthed staring, I make a point to make eye contact with that person and most of the time I give them a smile even if I can. I honestly would rather have someone approach us with a question than just stare. <br /><br />Anyway, thank you for posting this. My prayers always include Sophie.Sarahhttps://www.blogger.com/profile/05207276206345028427noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-2759998331165532112011-08-24T14:20:31.993-07:002011-08-24T14:20:31.993-07:00Maggie May and Annie -- Thank you so much for your...Maggie May and Annie -- Thank you so much for your sensitivity, and given the fact that I'm as edgy as they come, I didn't find your question edgy at all! I think your response to a person like Sophie -- some eye contact, a smile -- is perfect, and others in my boat would probably agree that we KNOW when people are sympathetic and kind. If it makes you feel better, I am in the same sort of quandary as you when I see a disabled individual in public -- paralyzed momentarily on the "right" reaction, wanting to plunge right in with my own story (I know this!) and so forth. As a mother of four, you've endured the stares of people in stores when your baby screams or your toddler tantrums, etc. -- and I imagine you are "helped" if someone actually says something to you that's kind or even acknowledges the difficulty. Anyway, I appreciate that you would want to do the perfect thing -- I imagine your intent and soulfulness comes out of your pores!Elizabethhttps://www.blogger.com/profile/03313726816776097840noreply@blogger.comtag:blogger.com,1999:blog-4863417462909147257.post-9753225053406509232011-08-24T14:04:31.990-07:002011-08-24T14:04:31.990-07:00Thank you, for sharing the blow by blow of your da...Thank you, for sharing the blow by blow of your day. It seems important to put that information out into the world. You and Henry both know a certain brand of patience that not everyone is familiar with.Denise Emanuel Clemenhttps://www.blogger.com/profile/10982725113569943337noreply@blogger.com