tag:blogger.com,1999:blog-7707332630639933436.post3507379145738681100..comments2024-02-21T07:58:44.752-05:00Comments on The Great Umbrella Heist: Living with spina bifidaSarahhttp://www.blogger.com/profile/09856102708963900512noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-7707332630639933436.post-54707066595242955842019-03-10T22:05:39.965-04:002019-03-10T22:05:39.965-04:00I’ve enjoyed reading your blog, but this is the fi...I’ve enjoyed reading your blog, but this is the first post I was tempted to comment on. We also had a pregnancy affected by a neural tube defect—anencephaly. I was taking folic acid. For a long time. And it still happened. And then I beat myself up when I read taking inisitol can help with folic acid resistant neural tube defects. And then I took super doses of folic acid combined with inisitol. And then our next pregnancy was affected with a different super rare and fatal abnormality. All that is to say sometimes crappy things happen and it’s not our fault and we can’t control everything. You did the best you could. It’s not your fault.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-73030270969013859752011-10-18T17:28:06.740-04:002011-10-18T17:28:06.740-04:00You don't know me but a dear friend of mine fo...You don't know me but a dear friend of mine follows your blog and has asked me to read this post and try to leave you with some words of encouragement. I am an adult with Spina Bifida, I am now 33 years old and have a 6 year old son. So here goes, I will try. I still get mad sometimes because I have Spina Bifida but I would not be the person I am today without having it. I don't go potty like the others but I wouldn't have it any other way. I am truly blessed and feel as if I have true care and compassion to all with disabilities because of being born with Spina Bifida. I wish I could change the world, I wish I cure all birth defects and diseases, but I do NOT wish I could just be like everyone else. I did when I was a child but not now, I like being me. I am bossy, strong-willed and the most determined person you will ever meet. I have to be, in order to be me. If nothing else, please remind Anna as much as you truly can that she was created to be something great, and she should always just be Anna!Lori Cutler Turnerhttps://www.blogger.com/profile/13385633293171687791noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-9152854430757850902011-10-12T13:40:10.710-04:002011-10-12T13:40:10.710-04:00I just love reading about Anna, all your girls rea...I just love reading about Anna, all your girls really, you are such a good mom to them. I can about imagine how Anna feels when her sisters don't have the same struggles. I read about Anna and often wonder how Liam would be doing if he didn't die in surgery. Wondering if he would've still needed a shunt, cathed, or if he could walk or not. I am so happy to hear though that she can walk.<br />Now being prengant again I am scared for this baby. I would love him/her the same if the diagnoses turned out the same, but taking my 4g of folic acid daily in hopes it doesn't.Beckyhttps://www.blogger.com/profile/11917822168137274298noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-66646172276711080102011-10-12T05:47:49.795-04:002011-10-12T05:47:49.795-04:00This post cracked my heart wide open. I've oft...This post cracked my heart wide open. I've often thought about you and the folic acid. Even if you were taking it, you were not to know you were going to get pregnant again so quickly, and with triplets. You absolutely can't blame yourself. You did the very best you could. <br />Your daughters are beautiful,all four of them. And you're an amazing, caring mother.<br />xoHope's Mamahttps://www.blogger.com/profile/04984543289642681339noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-2578092078908726752011-10-12T05:47:37.850-04:002011-10-12T05:47:37.850-04:00This post cracked my heart wide open. I've oft...This post cracked my heart wide open. I've often thought about you and the folic acid. Even if you were taking it, you were not to know you were going to get pregnant again so quickly, and with triplets. You absolutely can't blame yourself. You did the very best you could. <br />Your daughters are beautiful,all four of them. And you're an amazing, caring mother.<br />xoHope's Mamahttps://www.blogger.com/profile/04984543289642681339noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-89076102474213475582011-10-11T21:59:36.386-04:002011-10-11T21:59:36.386-04:00Thank you all for your comments. For those of you...Thank you all for your comments. For those of you who have little ones dealing with medical issues or have lost a little one, my heart goes out to you. We are not alone.Sarahhttps://www.blogger.com/profile/09856102708963900512noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-49818397024041888132011-10-11T19:31:56.827-04:002011-10-11T19:31:56.827-04:00Your post made me tear up. I sometimes wonder if I...Your post made me tear up. I sometimes wonder if I could have done anything different during my pregnancy. Big Hugs! Anna is a tough little cookieAmberhttps://www.blogger.com/profile/12909492842661018437noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-73104294771130274242011-10-11T16:05:24.615-04:002011-10-11T16:05:24.615-04:00This post made me cry. As someone who had to face ...This post made me cry. As someone who had to face a difficult diagnosis as a young adult ... I feel for her, trying to imagine having faced something like that, coming to understand it, at 4. I understand the anger. Sending tons of love and prayers for you all as you navigate these waters. You really are an amazing mom, Sarah.Macchiattohttps://www.blogger.com/profile/01143076637938193104noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-66214602582218086702011-10-11T15:05:45.837-04:002011-10-11T15:05:45.837-04:00I am not the mother of a special needs child but I...I am not the mother of a special needs child but I know first hand that no matter what we do, what preventions and precautions we take, there are things that are out of our control. We can beat ourselves up pretty good over it, blaming ourselves, agonizing over the what ifs. But that doesn't change the reality. And it hurts us. I know how angry our children can get. I know how unfair life is sometimes. I rage over it when my daughter does. But all I can do is tell her I understand, hold her and tell her we'll get through it together. Love and strength to all of you posting here and to Sarah for writing such a touching post.Kaylahttps://www.blogger.com/profile/12826420697691636347noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-25903552554736163322011-10-11T12:40:39.614-04:002011-10-11T12:40:39.614-04:00I, too, have a child who is angry and frustrated w...I, too, have a child who is angry and frustrated with how she was made. She is allergic to peanuts....so much so that she has to carry her EpiPen everywhere and be vigilant to not come into contact with nuts. She can't sit with her friends at lunch. She can't eat food at any parties or most restaurants. She's different. And she's ticked. But, she's compassionate to others who are different because, as we say, "everybody's got their 'thing.'" Even if you can't see it everyone is dealing with something. I don't know how to make it better for her except to minimize the impact it has in areas that I can control and make sure she knows I'm on "her team."Pattyhttps://www.blogger.com/profile/12100993691798824499noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-71898972663652714862011-10-11T09:45:03.949-04:002011-10-11T09:45:03.949-04:00All I have to say is that this post made me cry.All I have to say is that this post made me cry.yamilovesemmahttps://www.blogger.com/profile/12878792159045703146noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-69165140624855514912011-10-11T09:30:07.201-04:002011-10-11T09:30:07.201-04:00Here come the tears.
I haven't emailed you ba...Here come the tears.<br /><br />I haven't emailed you back, and i'm sorry. For some reasons sitting down to type an email seems like an incredibly hard thing to do, especially because I think it validates her future in some way, if I type it out. <br /><br />She's asleep right now, so I do have a free moment.<br /><br />First of all, thank you so much for this post. <br /><br />Second of all, thank you for your kind email. <br /><br />We go back to neurosurgery this week and i'm going to ask for a referral to the spina bifida clinic, I think that's our best next step in getting her to the right direction. <br /><br />I don't know how we are going to deal with this, but I just try to keep perspective, that it could always be worse, and I love that little girl to death.<br /><br />Lastly, the folic acid/b vitamin prevention stuff. REALLY REALLY REALLY gets to me.<br /><br />I play the blame game on myself like no other. I took vitamins and an EXTRA 3mg of folic acid for a year before we got pregnant. I really did take it quite faithfully (it helped with my migraines)..and yet, for some reason, something still went wrong in that first month of pregnancy. <br /><br />I don't understand, I want a reason. I want someone to be able to tell me WHY that if I did everything right, she still has a neural tube defect.<br /><br />I don't see that happening anytime soon.<br /><br />Thank you for this post, I'm going to have to start looking for SB resources, so I guess the clinic is the best place to start.Krystlehttps://www.blogger.com/profile/09187192435365185552noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-82053126300564151372011-10-11T00:20:55.258-04:002011-10-11T00:20:55.258-04:00I don't have words of advice on the knowing yo...I don't have words of advice on the knowing you're different part, because Julia is only 2 1/2 and doesn't know.<br /><br />But I can relate to the folic acid thing. Caitlin had an encephalocele, which is the opposite end of spina bifida - the whole was in her skull and her brain protruded. I get so mad when I read about folic acid and it reducing birth defects, and people saying "well I take prenatals so I am set". I did that. For MONTHS before we even started trying to get pregnant, b/c we kept postponing our "let's start trying date", so I figured it was best to just take it and be prepared. So I am with you, I have to think some things are just beyond any control.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-54108839136639704872011-10-10T22:56:34.083-04:002011-10-10T22:56:34.083-04:00Oh, this post is makes me sad. I too wondered if t...Oh, this post is makes me sad. I too wondered if there was anything I could have done differently during my pregnancy. I also wonder how or what is age appropriate to explain to my little girl's siblings. Hugs!Mamahttps://www.blogger.com/profile/05428628336108048391noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-49501456671934375712011-10-10T22:35:22.808-04:002011-10-10T22:35:22.808-04:00I am praying for her and for a cure.
I can't i...I am praying for her and for a cure.<br />I can't imagine how hard it is to be different than her two sisters at such a young age.Elyssahttps://www.blogger.com/profile/04830076266844906238noreply@blogger.comtag:blogger.com,1999:blog-7707332630639933436.post-84380250220232141402011-10-10T22:21:18.105-04:002011-10-10T22:21:18.105-04:00Honestly written. Anna's point of view is perf...Honestly written. Anna's point of view is perfect. Sometimes I hate Spina Bifida too. :) We have Beckett's 15 month checkup with our pediatrician tomorrow and I'm dreading it...filling out the development stuff when he's not walking yet. Just gotta keep pushing on. Hugs to you and Anna.JourneyWithTheCrosiershttps://www.blogger.com/profile/05370291003360952184noreply@blogger.com