tag:blogger.com,1999:blog-16825229.post6338297263230044517..comments2023-11-05T01:20:41.116-07:00Comments on gwendomama: The Hardest Question to AnswerUnknownnoreply@blogger.comBlogger25125tag:blogger.com,1999:blog-16825229.post-54836153999827362732010-01-23T18:06:46.321-08:002010-01-23T18:06:46.321-08:00Holy shit. I was "next-blogging"
and f...Holy shit. I was "next-blogging"<br /> and found your blog and bookmarked it because I liked your post about flying with your kids. (Airlines = assholes, totally true). I was looking through your site and came across these posts about Elijah.<br /><br />My heart is broken reading about your heartbreak. I am stunned (but not surprised) by the incompetence of the doctors. A hospital almost killed my son who was five at the time and had a broken leg. They insisted on an IV for "fluids" and fucked up his electrolytes almost to the point of permanent heart and kidney damage. Thankfully he had a seizure and the stupid incompetent fools finally saw that I was not just a crazed mother when I kept saying all night long SOMETHING ISN'T RIGHT! It's eight years later and I still want to go in and spray the place with bullets. <br /><br />Elijah was a stunningly beautiful baby and I am so very sorry for your loss. <br /><br />Sarah<br /><br />p.s. your SIL is a moron.Sarah https://www.blogger.com/profile/14091395645226862871noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-3156530555892767332008-08-21T11:52:00.000-07:002008-08-21T11:52:00.000-07:00I trundled over here from Eliza's blog. God, Elija...I trundled over here from Eliza's blog. God, Elijah was beautiful. I am so, so, sorry he died, and from such a mishmash of things that should not have happened. Forgiveness? Eh, that's an overused word. It sounds as if, when your mother uses it in this instance, she means, "Suck it up and keep quiet." Not fair. And "getting over it?" Another massively overused term. I can only imagine how much you must miss your beautiful son.terri chttps://www.blogger.com/profile/09398808840234914275noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-67403042958954543792008-08-20T01:04:00.000-07:002008-08-20T01:04:00.000-07:00Gwendomama--I found you through a zillion links an...Gwendomama--I found you through a zillion links and have read about your Elijah with great interest and sadness; what a beautiful boy! I just wanted to throw in my two cents and urge you not to beat yourself up, because I have a child with atypical facial features and many similar symptoms (now almost three) and stumbled upon MPS in my consultations with Dr. Google and was CONVINCED that that was what my child had...so was our geneticist. But we had the urine test done and IT WAS NEGATIVE! What does this mean to you? Well, not a damned thing since we're talking about a different kid entirely, except that MAYBE Elijah did not have MPS either (I can, and gladly will, if you come and leave me a comment expressing interest--because I don't publicize my e-mail but do moderate comments--show you pictures of my baby that are in some ways very similar to MPS children) and would not have benefited from this enzyme-replacement therapy. I could absolutely be talking out of my arse here, but one thing I've learned from nearly three years of armchair Human Genetics is that a lot of things look like a lot of other things, but aren't those things. It's horribly frustrating when you want answers, and I debated even leaving you this comment, but I hate the idea of you out there thinking that MAYBE if you had done X he would still be here (because I can totally reach out from over here with the magic of my words and snatch your crystal ball, YES! And tomorrow I will do ALL OF THE LAUNDRY!). I know what it is to care for a child with Elijah's sort of issues, and for what it's worth I think you did a fantastic job. There are a lot of similarities in Elijah's story and that of my youngest, and in your family's and mine, and like you I wonder, INCESSANTLY...but I just wanted to mention that MAYBE you DID do everything possible. I play The Blame Game with myself and agonize over little moments and seemingly minor decisions and kick my own arse CONSTANTLY with it, and my little one is still asleep just down the hall, so the idea that you are doing the same thing but with such exponentially HIGHER stakes (in retrospect, of course, but STILL--I do that thing where you turn the uncontrollable into the controllable and take the blame in order to keep it from being uncontrollable ALL THE TIME; the clinical term for this eludes me) hit a sore spot in me. It's frustrating how we know JUST ENOUGH to tell what KIND of problem a child might have, but not enough to pin a name on it and concoct a treatment. I was just spouting off to a friend about my youngest's epicanthal fold measurements and she said "that sounds like stereotyping!" and I said "no, there are eyeball slide-rule thingies that they use to MEASURE them, to the millimeter, and ranges that constitute a norm!" and she was amazed and then I said "but since no one has come up with a better explanation I still say I would be THRILLED to be the neurotic mother of a funny-looking kid, and furthermore I would posit that my child is simply so VERY good-looking that it defies medical science!" And we agreed that that would be a very good answer indeed, in our fantasy-musings. I can't tell you the "why" of what happened to Elijah, but I would absolutely defend the theory that he, too, was not "atypical" or even "MPS-affected" but rather too good-looking for comprehension. And the rest is a mystery to me, too. I'm so very sorry for your loss and will admit that the parallels between Elijah and my youngest chill me on a certain level. If you ever feel like answering some nosy medical questions please let me know--our geneticist is stumped and has actually URGED me to come to her with anything I might come across online at this point. But mostly I'm just really saddened to "meet" your handsome little fellow and hear of your losing him all in one day.Elizahttps://www.blogger.com/profile/13788282464956879318noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-12289405829459623382008-08-09T19:02:00.000-07:002008-08-09T19:02:00.000-07:00I LOVE that picture of Elijah... those are the mos...I LOVE that picture of Elijah... those are the most kissable cheeks ever and those eyes would make any human with a beating heart swoon.<BR/><BR/>*HUGS*<BR/><BR/>Rachel in Boulder CreekAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-57550458655450092962008-08-08T08:41:00.000-07:002008-08-08T08:41:00.000-07:00I came to your blog for recreational reasons and s...I came to your blog for recreational reasons and stayed because I recognized a kindred spirit. <BR/><BR>While I have yet to lose a child (at 32 weeks with my first/only now), I have lost, and grief is a tough enough thing to go through with the loss of an adult. I am constantly questioning how I will deal with something like your loss. I hope I am as honest. <BR/><BR>The "he/she's in a better place/spared/better off" comments keep coming to me regardless of who I lose, and I refuse to believe that people can be excused for such callous behavior--especially people who are usually, like you said of your SIL, so "nice". I just find it that much more difficult to forgive the "nice" people who "mean well", because they're exactly the ones who should know f-in' better.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-43733214623841471442008-07-28T21:50:00.000-07:002008-07-28T21:50:00.000-07:00I am so sorry to hear your dear beautiful son died...I am so sorry to hear your dear beautiful son died.. Just found you and have been reading..<BR/><BR/>I have worked with individuals with disabilities for many years now (30) and have great compassion for them. I am so sorry your son's life ended as it did. And I hope in time you and those dear to him are able to move on and be happy.<BR/><BR/>What happened was very tragic.. No one should have to live through similar.amyinbchttps://www.blogger.com/profile/01633627179582112435noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-60006753186218700062008-07-26T23:07:00.000-07:002008-07-26T23:07:00.000-07:00I just started reading your blog and I feel intrus...I just started reading your blog and I feel intrusive commenting when I haven't been here for the whole journey, but I just had to say the Elijah. He was beautiful. And you have every right to be angry. Your SIL and your brother and your mother...are so WRONG. I really don't understand how people can be so unbelievably self-absorbed. <BR/><BR/>I'm so so sorry. I don't know what else to say. Except that he was adorable and I wish things could have been different. For you and for him.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-70130305992534856022008-07-23T13:18:00.000-07:002008-07-23T13:18:00.000-07:00Well, feck me. You are so right to be angry. Thi...Well, feck me. You are so right to be angry. This is YOURS to decide what feelings you want to attach to it, and you are right that people just don't know until they've been there. Elijah is a beautiful baby boy. I would have liked to have met him.Debbiehttps://www.blogger.com/profile/14211805955994405751noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-61905570471479941802008-07-18T02:43:00.000-07:002008-07-18T02:43:00.000-07:00Babe, took me 4 goes to read this. I kept getting...Babe, took me 4 goes to read this. I kept getting so weepy and so angry I had to go away...<BR/><BR/>I have had the opposite. About Boo. Apparently the child that shouldn't have lived, would have been a blessing if the apnea as a baby took him, how disabled those that died before him would have been, how much better all our lives would be without him... so I understand. Fuck how I understand.<BR/><BR/>Your boy was beautiful. He should still be here. I am angry for you. And people like your SIL have never felt real pain or loss so have no idea how to deal with it. Lets hope for her childrens sake that nothing terrible happens in their lives.<BR/><BR/>Hugs babe. You are wonderful.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-66315284258893621702008-07-15T07:01:00.000-07:002008-07-15T07:01:00.000-07:00There really isn't anything I can say that hasn't ...There really isn't anything I can say that hasn't already been said already. You were cheated. Elijah was cheated. He was beautiful and he looked so happy in that picture.<BR/><BR/>Your family though is another matter. I know you said that your SIL is a really nice person. I'm sure she is. However, nice people still can say the most stupid of things when they're trying to be nice. She and your brother. Sure, you know they meant well and obviously what they said probably didn't come out as intented, but that is not YOUR fault. And from what I gather, your brother may have made the one stupid comment, but your SIL keeps repeating hers at family events? And your mother defends the SIL for saying such stupid things and says that YOU are the one that should forgive and forget? See - THAT is truly messed up. Why should you be okay and condone the rubbish spewing out of peoples' mouths? And by letting it slide, you would be giving the unspoken go-ahead that that sort of thing is acceptable. Have you approached this SIL and told her that what she says is not okay with you? Has your mother? Has your brother? <BR/><BR/>Perhaps telling her once and for all that although you appreciate her being one of the only people courageous enough to bring up Elijah, and although you appreciate her well-meant words, what she says - and you can quote her here if she says the same blasted thing over and over - is not okay with you. Perhaps she just doesn't get it. Anyhow, if she's called on it, it's likely that she won't say it again. <BR/><BR/>I still feel that your mother should feel ashamed that she will defend your SIL's stupid and unthoughtful words over your feelings. That's just wrong in so many ways.The Herrellshttps://www.blogger.com/profile/14720588310267665347noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-27318125288176713472008-07-14T21:47:00.000-07:002008-07-14T21:47:00.000-07:00He was so beautiful.He was so beautiful.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-9362332997192316472008-07-14T14:46:00.000-07:002008-07-14T14:46:00.000-07:00I'm sorry people cannot let you grieve the way you...I'm sorry people cannot let you grieve the way you need to and to share the way you need to. I can relate on a smaller scale after multiple miscarriages and agree, they are morons. There isn't much I can say after reading the previous comments, they are the words I want to say. Elijah was beautiful and I'm so sorry there wasn't the time nor coordination of efforts there for him. Your SIL is a dumbass, but your brother, I want to kick. Seriously.fairymamahttps://www.blogger.com/profile/09313553382032525988noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-57338253775674692062008-07-14T14:22:00.000-07:002008-07-14T14:22:00.000-07:00every time i write about elijah, i put people at r...every time i write about elijah, i put people at risk. i risk making many people uncomfortable. that's the beauty of the click.<BR/>which is why i appreciate each and every single person who can take their own risk to be bumbling idiots (i do it to, frequently - i received no immunity from that with my deadbaby status). the mere fact that you can even attempt words after i have expressed such bitterness warms my heart and impresses me.<BR/><BR/>and i also have to say - my SIL REALLY IS a nice person and REALLY DIDN'T mean anything by it.<BR/>the issue has become more of the gag order for me. i don't like to play that way.gwendomamahttps://www.blogger.com/profile/08439664476465264089noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-76410674490963864182008-07-14T14:06:00.000-07:002008-07-14T14:06:00.000-07:00Sometimes, rage is what keeps us breathing, I held...Sometimes, rage is what keeps us breathing, I held onto my rage (over a totally different reason) for 17 years, only when I was sure I wouldn't actually die from the grief could I let it go, like spewing a huge black ball of rage that felt as though it may actually kill me after all.<BR/>People, when faced with a situation they cannot possibly imagine dealing with, become bumbling idiots, it's the truth.<BR/>I had so many people tell me how lucky my children were because when they were snatched and horrifically abused by some pedophilic monster,taking them FOUR YEARS before they even smiled properly again, they weren't killed. What luck! I would say...how incredibly LUCKY we all are. Bumbling idiots. <BR/>A year later, one kind hearted idiot asked me if I had been abused myself as a child because, well Why on earth wasn't I over it yet? <BR/>I held onto that rage and I nursed it because Dear God if it didn't stop me crumbling and just giving up. To me it was a positive feeling, that hatred.<BR/>When we grieve, for whatever reason, we have t do whatever keeps us up and breathing to get through another day.<BR/>My mum would tell me over and over that she couldn't bear to hear what had happened, so could I keep it to myself. My Bishop at church said I should probably keep it quite in case people got fed up with hearing such negativity.<BR/>Idiots from the home on out. Hold onto whatever keeps you sane right now. Elijah is your baby, it is your heart that has been torn open and left gaping.<BR/>I have been reading your blog for a while and am not sureif I have ever commented before, because of course I have no idea what to say, I am a bumbling idiot.<BR/>He was beautiful, truly perfect in every way. My heart breaks for you.The other mehttps://www.blogger.com/profile/03913638956964378435noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-88485710182571809822008-07-13T22:47:00.000-07:002008-07-13T22:47:00.000-07:00I've been thinking about your family on and off al...I've been thinking about your family on and off all day. <BR/><BR/>and the things people say in an attempt to comfort and soothe and mask and move on. different ways of dealing with grief. the loss of knowing the right thing to say- wanting to say and do the right thing- wanting to ask really, how is it? wanting to help, but afraid to touch the raw spot- worried about moving on, moving past. others, being in denial, platitudes, pushing past the pain. having different agendas. <BR/><BR/>Honesty, just being honest. <BR/><BR/>Saying that doesn't help me. I'm not ready for that, please keep it to yourself. I'm glad that the thought helps you feel better, but it makes me want to scream. Go away. I want to be mad and sad and grieve and THAT IS FUCKING OKAY! <BR/><BR/>Not that you were asking. Weird what comes out sometimes.Triciahttps://www.blogger.com/profile/14581392888793642746noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-26039704237449595362008-07-13T16:17:00.000-07:002008-07-13T16:17:00.000-07:00I saved this post to read when I had the time and ...I saved this post to read when I had the time and emotions around me to do it justice.<BR/><BR/>You are blessed to have 3 beautiful children, and cheated to now only have two where 3 should be. They are lucky beyond words to have you as a Mama.<BR/><BR/>My heart cries for your loss- all of them. Your beautiful boy and for the supportive family that you should have in the wake of this tragedy.<BR/><BR/>I can't fathom that my words would mean a hill of beans in this situation because I know without a doubt that there are no 'words' for what you have gone through, but I would like for you to know that your story has deeply touched me and I will pray for your family.I can't find my bloghttps://www.blogger.com/profile/02613321200230079978noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-83447497057470363782008-07-13T15:00:00.000-07:002008-07-13T15:00:00.000-07:00Man, oh man. I'm not a violent person but I really...Man, oh man. I'm not a violent person but I really want to beat the living tar out of your brother and sister in law. Some people are just ignorant idiots.<BR/>That picture of Elijah is just beautiful. What a gorgeous little boy. You were cheated..Lindahttps://www.blogger.com/profile/17913320357828225209noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-25996690987034656522008-07-13T11:54:00.000-07:002008-07-13T11:54:00.000-07:00Spared?? "really never should have lived"?? I am s...Spared?? "really never should have lived"?? I am so angry reading those words, I can't even imagine how you feel. Your son should have received the correct care and NO ONE should have ever been uncomfortable around him. ooh, that makes me mad. <BR/><BR/>You go ahead and rage all you need to, honey. sending big hugs.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-41988452096649565332008-07-13T10:46:00.000-07:002008-07-13T10:46:00.000-07:00Thank you for your comments at my blog. You weren'...Thank you for your comments at my blog. You weren't too forward at all.<BR/><BR/>I've only read this post of yours so far, and I just want to say that I'm so sorry. Elijah was beautiful. I can't believe that your SIL could barely stand to hold him--I wanted to reach through my computer screen and scoop him up myself. <BR/><BR/>Thinking of you.Snickollethttps://www.blogger.com/profile/14123630374052898460noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-36877322980454216322008-07-13T10:14:00.000-07:002008-07-13T10:14:00.000-07:00heartbreaking post. Elijah makes me smile.Grudges ...heartbreaking post. <BR/>Elijah makes me smile.<BR/>Grudges are ok. I hold them too.<BR/>-Shannon in AustinShannonhttps://www.blogger.com/profile/12502975676135226121noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-41506076129083486622008-07-12T22:52:00.000-07:002008-07-12T22:52:00.000-07:00Reading this really, REALLY pissed me off. I hate...Reading this really, REALLY pissed me off. I hate it when people need so badly for everything in life to make sense that they explain away the most tragic and awful things by saying it was for the best. No. It wasn't for the best. It's undeniably fucked up. I'm so sorry that you've got family members dishing shit like that out. They should be the ones watching your back and carrying you. <BR/><BR/>love you<BR/>xoxoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-61716269484679480682008-07-12T22:13:00.000-07:002008-07-12T22:13:00.000-07:00Ok can i just say that I want to bitch slap your s...Ok <BR/>can i just say that I want to bitch slap your sil? Somepeople are so fucking stupid. I will say that Elijah is the most beautiful baby that I have ever seen. Oh and you my friend.... Inspire me every day. Love you!Denisehttps://www.blogger.com/profile/03519732798505354256noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-17890367664871267522008-07-12T19:04:00.000-07:002008-07-12T19:04:00.000-07:00Oh Gwendomama, big hugs to you. I started reading...Oh Gwendomama, big hugs to you. I started reading your blog shortly after my 13 month old was born and it really has made me love my little guy more. Each time you post on Elijah my heart goes out to you. It also makes me go hug and kiss my baby. I cannot imagine what you have gone through. I am so sorry you have had to experience such pain but I am so happy you had time with your sweet baby.<BR/><BR/>Thank you for such a lovely post.Heatherhttps://www.blogger.com/profile/09041926411716116094noreply@blogger.comtag:blogger.com,1999:blog-16825229.post-13996783126292359362008-07-12T17:58:00.000-07:002008-07-12T17:58:00.000-07:00Oh honey, any sane person would be angry. And any ...Oh honey, any sane person would be angry. And any sane person would understand that a Mom who's been through what you've been through is going to react with anger at stupid, inane, cliched responses. <BR/><BR/>What better place could there be than with you and his family? None. He wasn't spared. He was cheated, same as you. <BR/><BR/>You're 100 percent right to distance yourself from anyone that tells you different.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-16825229.post-65561248150440148332008-07-12T14:01:00.000-07:002008-07-12T14:01:00.000-07:00Oh My Dear One, It will never be the same for you ...Oh My Dear One, It will never be the same for you or any of us who love you and your family. You were and still are a magnificent mother. Elijah was so blessed. You were so blessed. We will ALL miss him forever.Boss of Seattlehttps://www.blogger.com/profile/11070666849628105515noreply@blogger.com