tag:blogger.com,1999:blog-21558474.post499785456780200672..comments2023-11-02T08:09:02.234-04:00Comments on Her Bad Mother: The Heart is a Muscle. Use It.Her Bad Motherhttp://www.blogger.com/profile/03535958887714152413noreply@blogger.comBlogger60125tag:blogger.com,1999:blog-21558474.post-27641772366942222682009-01-23T11:44:00.000-05:002009-01-23T11:44:00.000-05:00I know exactly what you'll are going through...My ...I know exactly what you'll are going through...<BR/><BR/>My cousin is ten and has the same disorder, they diagnosed it when he was six, he refuses to use a wheelchair because he's embarrassed, he hates leaving the house, doesn't talk much..<BR/><BR/>Its heartbreaking to see him waste away...lemonhttps://www.blogger.com/profile/05528247138263661583noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-68993081921055037962009-01-06T19:09:00.000-05:002009-01-06T19:09:00.000-05:00I have just started reading your blog recently and...I have just started reading your blog recently and I have just seen this post for the first time. I work as a counselor for Muscular Dystrophy camp. I understand how hard this is for everyone in the family. The hardest thing about working with these kids is knowing that they will die all too soon. In the six years I've been with MDA, I've lost 6 kids- all under 21. It's killer. Know that I am thinking of y'all.<BR/><BR/>Also, does Tanner go to MDA camp? I don't know if BC has one but I know in the US there's a camp in every state (and in some states there are several camps) where for a week kids with Muscular Dystrophy get to go to camp like every other "normal" child. It's a great camp, and I know all the kids I see at camp, say it's the best week of their lives. Keeping Tanner in my thoughts.Perksofbeingmehttps://www.blogger.com/profile/10708968006988615833noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-2915000126137740182008-11-10T04:22:00.000-05:002008-11-10T04:22:00.000-05:00Great work.Great work.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-12106615300800070582008-08-28T11:49:00.000-04:002008-08-28T11:49:00.000-04:00Yeah, I'm late to this party, sorry, found you via...Yeah, I'm late to this party, sorry, found you via Motherhood Uncensored.<BR/><BR/>My kids (and I) have albinism. It is a genetic condition. I know several parents who have stared blogs to cope and share information. I knew what I was getting into when I got pregnant, most people don't expect a child with albinism. I enjoy reading their blogs as they make their journey through the process.<BR/><BR/>At the very least, she should set up a Google Alert, so that she can receive updates when info about DMD is published. <BR/><BR/>Good luck to her!Lee Laughlinhttps://www.blogger.com/profile/13621322854771704378noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-52503955792342329202008-08-26T23:50:00.000-04:002008-08-26T23:50:00.000-04:00How is Tanner doing now? I agree with the other c...How is Tanner doing now? I agree with the other commenters - your sister should start a blog. It can help build community instead of isolation. Thanks for sharing. Also, thanks for the links to the donation / charity sites - I hadn't heard of that one before.Emmahttps://www.blogger.com/profile/15453948129003575568noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-70239745676386615232008-08-26T22:17:00.000-04:002008-08-26T22:17:00.000-04:00I'm sitting on my sofa bawling after reading this....I'm sitting on my sofa bawling after reading this. Diseases are so ignorant, picking on someone so young and precious. May love, hugs and prayers your family's way. You guys are going through so much. Just know that there are many people out here making a virtual net for you that will catch you when you need it.<BR/><BR/>xoxoAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-28914114046212192252008-08-25T14:50:00.000-04:002008-08-25T14:50:00.000-04:00My heart, once again, is in my throat from reading...My heart, once again, is in my throat from reading one of your posts. I'd like to just sit back and pretend I didn't read any of this, but I can't... it is stuck in my mind and I want to help. I can't even imagine this pain...Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-89298521425542390362008-08-25T12:24:00.000-04:002008-08-25T12:24:00.000-04:00"Too much".I hate when I commit one of my biggest ..."Too much".<BR/><BR/>I hate when I commit one of my biggest pet peeves in print.<BR/><BR/>Duh.Loralee Choatehttps://www.blogger.com/profile/16055102094371755499noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-54130549979296364202008-08-25T12:21:00.000-04:002008-08-25T12:21:00.000-04:00This is for your sister:Hi, my name is Loralee. Yo...This is for your sister:<BR/><BR/>Hi, my name is Loralee. You don't know me from Adam, but I really respect and like your sister. <BR/><BR/>I imagine that she knows you very well, and so I am going to take it that her option is that this blog would help you, given your personality.<BR/><BR/>I lost my baby son to SIDS in 2003. I knew nothing about blogs back then. I didn't start blogging until 2005 and I can tell you with firm assurance and no exaggeration that it helped save me.<BR/><BR/>The love and support of the internet is an amazing thing to witness. Sure, there are bumps on the road and negative things, but those are blips on the radar in comparison to how much help, support and kindness that I have received. <BR/><BR/>I needed other mothers who have lost little ones. I needed people who hadn't lost children but who were there to support me. Or just to listen. <BR/><BR/>Plus? It's not in your everyday life. It is a place to run to when day-to-day realities of everything are just...TO MUCH.<BR/><BR/>NOTHING really makes it better, but chipping away at the big load that makes up my experience is a LOT less big and horrible when you have people to laugh and cry with.<BR/><BR/>And?<BR/><BR/>I'd read it.<BR/><BR/>Much love,<BR/><BR/>Loralee<BR/><BR/>(Just my 2-cents.)Loralee Choatehttps://www.blogger.com/profile/16055102094371755499noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-25450799004645211672008-08-11T23:13:00.000-04:002008-08-11T23:13:00.000-04:00I wonder if your sister might be interested in one...I wonder if your sister might be interested in one of the caringbridge sites... maybe the "beginner's blog". Our good friends recently suffered the loss of their daughter to neuroblastoma (cancer). I believe they met many online friends and followers through her journal. <BR/><BR/>http://www.caringbridge.org/visit/alexaaignerAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-31663898806857658902007-08-26T15:04:00.000-04:002007-08-26T15:04:00.000-04:00I sent Tanner magnets from the Adirondacks and sha...I sent Tanner magnets from the Adirondacks and shared his story with my office. I am grateful for the update and would echo your push for a blog. A friend wrote to let me know his daughter had been diagnosed with Rhett's Syndrome. I get countless hits from people seeking information and support. She would receive as much as she'd be giving. <BR/><BR/>We'll work on another something for him and send our virtual hugs to everyone who loves himAmandahttps://www.blogger.com/profile/06785403140233495009noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-22028063965850613022007-08-24T16:47:00.000-04:002007-08-24T16:47:00.000-04:00Your post was incredibly touching. I was previousl...Your post was incredibly touching. I was previously unaware of DMD and the implications on both children and their families. Tanner sounds like an incredible boy and very loving and devoted to family. DMD is such an amazing cause because the effects of it are so devastating. I hope other people jump on board and support DMD. iBakeSale was created just for this purpose, to give people an easy and free way to support important causes they are passionate about. My prayers go out to you and your family.<BR/><BR/>Jonathan Treiber<BR/>CEO iBakeSale.comAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-14830086870819954452007-08-19T23:27:00.000-04:002007-08-19T23:27:00.000-04:00I've been thinking about little Tanner tonight. S...I've been thinking about little Tanner tonight. <BR/><BR/>Sending him love and prayers. Just because he brings you and Wonderbaby joy. <BR/><BR/>Hugs (to all).Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-5680332247434719512007-07-27T20:54:00.000-04:002007-07-27T20:54:00.000-04:00Hi HBM, I'm new here and have really enjoyed your ...Hi HBM, I'm new here and have really enjoyed your blog this evening. <BR/><BR/>To your sister:<BR/><BR/>You will be amazed at how easy and even cathartic it will be for you to start a blog. I inititally started a blog about my son (born with disabilities) to keep my family and friends around the U.S. updated on his progress. <BR/><BR/>What I didn't plan on (and was really amazed by) is the community of parents I found (who found me!) who had children with some of the same disabilities. They have been a constant source of support and I've been able to help them through some tough decisions as well. <BR/><BR/>It will change the way you look at life in ways you cannot imagine.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-24033140740914007722007-07-27T09:54:00.000-04:002007-07-27T09:54:00.000-04:00Many hugs and prayers. I can very much relate to ...Many hugs and prayers. I can very much relate to this story.<BR/><BR/>www.prayingforparker.comTammy and Parkerhttps://www.blogger.com/profile/16591163985710800183noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-45367302367559645692007-07-25T05:53:00.000-04:002007-07-25T05:53:00.000-04:00HBM: I swear to god that the project that I propos...HBM: I swear to god that the project that I proposed doing is almost finished. I'm giving myself to the end of July to get it done because you've waited long enough. I'm really sorry it is taking so long.<BR/><BR/>I hope HBMS likes it.JChevaishttps://www.blogger.com/profile/02683339168047479228noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-61200496268324343012007-07-23T18:26:00.000-04:002007-07-23T18:26:00.000-04:00tears flow for I am another bad mom( not Tanners m...tears flow for I am another bad mom( not Tanners mom) but a mom who can understand what it is to love a child that you are going to lose, I have walked the walk, I found your blog while out on a blog walk and well today it made me cry but that is good, and dear sister non blogger, take it from me blogging so helps the heart, it helps the fear, it helps the isolation, I so know that walk as I raise a child who too is unique. <BR/>Thanks for this repot!Holliehttps://www.blogger.com/profile/06173197714536544439noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-2561758382921404462007-07-23T15:57:00.000-04:002007-07-23T15:57:00.000-04:00Don't do this to me. I'm so behind in reading, es...Don't do this to me. I'm so behind in reading, especially your site, and when I finally stop by you have a story about Tanner. You know from my previous mails how I feel about this so no further comment needed. My offer from last year is till valid.<BR/><BR/>Please start a blog about Tanner and his disease. Now if you'll excuse me I think I got something stuck in my eyes which make them water.<BR/><BR/>ADAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-84532841901190418462007-07-23T02:45:00.000-04:002007-07-23T02:45:00.000-04:00Beautiful boy, brave mama, great post.HBM's sister...Beautiful boy, brave mama, great post.<BR/><BR/>HBM's sister - A blog would be wonderful.Lady Mhttps://www.blogger.com/profile/13360693450146358247noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-31438702097379297122007-07-22T21:36:00.000-04:002007-07-22T21:36:00.000-04:00A friend and I were born just months apart. Our fa...A friend and I were born just months apart. Our families were so close, we considered each other cousins. So when I began walking, his mom became concerned that he was not yet crawling. He soon came to be diagnosed with MD. Fast forward a few years. Doctors told his mom not to have more children because they too would likely have MD. She didn't listen. And they ended up with two more sons - one "healthy" and the youngest also with MD. I have since lost my friend. Fortunately his youngest brother is still with us.<BR/><BR/>Why am I telling you? So you can tell your sister that she is not alone! I know that my "aunt" would have loved it if she were able to read about another mom in a similar situation as she was. I remember just as a family friend how isolated <EM>I</EM> felt and realizing as I grew older what it must have felt like to their family. There's something to be said about being able to bare your soul with others who completely understand.<BR/><BR/>HBM, another beautiful post.Mom2Amarahttps://www.blogger.com/profile/00533902850974337396noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-48002466021060187262007-07-22T19:42:00.000-04:002007-07-22T19:42:00.000-04:00Did he make his wish? Post more about him and plea...Did he make his wish? Post more about him and please - Tanner's Mom - START THAT BLOG!!!Trixie Twatwafflehttps://www.blogger.com/profile/12712977707578497875noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-85006341817701448212007-07-22T08:43:00.000-04:002007-07-22T08:43:00.000-04:00HBM - What a beautiful post. My heart also aches....HBM - What a beautiful post. My heart also aches. I started blogging to get my story out about my son's issues. It has changed my life. I am sure it would for your sister, too, but we all have to find the way that works for us. Perhaps she could try writing for herself alone first and then decide if she wants to share it. At the very least she would be preserving her memories. Maybe the leap to helping others will come later.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-21558474.post-6110537051870059542007-07-21T21:15:00.000-04:002007-07-21T21:15:00.000-04:00HBM's sissy:"There are thousands of loving hands a...HBM's sissy:<BR/>"There are thousands of loving hands and warm hearts out here, and that we really do strive to make a difference, and that we can help you make your difference."<BR/>Your sissy said it perfectly. Let us help you and Tanner.moosh in indy.https://www.blogger.com/profile/12077275788790896224noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-12330876222014514132007-07-21T21:06:00.000-04:002007-07-21T21:06:00.000-04:00What ever I can do to help convince HBSis I will d...What ever I can do to help convince HBSis I will do it. I've got to check out all your links now and I really hope I can do something to help - you know that's true (and see this, HBSis? I found a fantastic community including HBM that are real life friends and support).motherbumperhttps://www.blogger.com/profile/16053978199395919666noreply@blogger.comtag:blogger.com,1999:blog-21558474.post-71693833644699059882007-07-21T18:56:00.000-04:002007-07-21T18:56:00.000-04:00HBM's Sister: please blog.Not only will you be pro...HBM's Sister: please blog.<BR/><BR/>Not only will you be providing a source of information, community and comfort to parents of children with muscular distrophy, but you will also be educating the rest of us.<BR/><BR/>And I think you might be pleasantly surprised by the world you create in your own little piece of internet.Terehttps://www.blogger.com/profile/15850314798468099658noreply@blogger.com