tag:blogger.com,1999:blog-3457913521076392267.comments2023-07-06T06:23:01.515-07:00Behind my smileBehind my smilehttp://www.blogger.com/profile/06972581858393230715noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-3457913521076392267.post-83802104462095466172019-08-08T09:40:39.061-07:002019-08-08T09:40:39.061-07:00Is this zack from FusionCap
Is this zack from FusionCap<br />Geek000https://www.blogger.com/profile/02805838335252650754noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-53295003513155954082018-12-14T06:38:58.522-08:002018-12-14T06:38:58.522-08:00Beautifully written.Beautifully written.Lucahttps://www.blogger.com/profile/05229407443080879679noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-27757079872644217832018-07-12T05:04:09.470-07:002018-07-12T05:04:09.470-07:00Beautifully written with love.Beautifully written with love.Lucahttps://www.blogger.com/profile/05229407443080879679noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-6520278186963580362014-07-28T08:58:20.714-07:002014-07-28T08:58:20.714-07:00as parents of special children we all share a bond...as parents of special children we all share a bond- hugs you are not aloneBehind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-67897228277170369532014-07-27T13:21:35.714-07:002014-07-27T13:21:35.714-07:00Thank you for your thoughtful prose. Reading this ...Thank you for your thoughtful prose. Reading this makes me feel a little less isolated and alone. <3Anonymoushttps://www.blogger.com/profile/03847459443332114584noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-9287795474340482072014-05-01T08:25:35.706-07:002014-05-01T08:25:35.706-07:00I will never grow tired of watching this! I will never grow tired of watching this! Lucahttps://www.blogger.com/profile/05229407443080879679noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-65291030901721118282014-04-30T13:52:27.515-07:002014-04-30T13:52:27.515-07:00my courageous son and his beautiful date
my courageous son and his beautiful date<br />Behind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-83350268106760575772013-12-28T21:23:01.182-08:002013-12-28T21:23:01.182-08:00beautiful writtenbeautiful writtenvinnyhttps://www.blogger.com/profile/10621601093649844969noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-27428488344513863552013-11-17T11:54:59.650-08:002013-11-17T11:54:59.650-08:00What a terrifying ordeal! I am thankful no physic...What a terrifying ordeal! I am thankful no physical harm came to anyone!Anonymoushttps://www.blogger.com/profile/04804720786471373570noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-45182427037933416152012-09-03T09:17:45.233-07:002012-09-03T09:17:45.233-07:00okay, i am waiting for what happens next!okay, i am waiting for what happens next!donnahttps://www.blogger.com/profile/00778078735079087000noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-61411341148813957522012-05-03T19:23:00.716-07:002012-05-03T19:23:00.716-07:00So sorry sweetie. Just know that you are an amazin...So sorry sweetie. Just know that you are an amazing woman and mother, not just anyone can take such great care of these two boys. My heart reaches out to you and I pray that you get some rest soon.Anonymoushttps://www.blogger.com/profile/07653569198255120457noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-84832991657392298592012-03-25T21:17:03.043-07:002012-03-25T21:17:03.043-07:00I am sorry I did not respond earlier. You are one...I am sorry I did not respond earlier. You are one of the few people who have shared with me that it is easier to just lift our sons than drag out the hoyer. Which by the way I really dislike. It is so time consuming to hook them up. what child wants to make going to the bathroom take 30 min. In fact if I can share with you, a few moms have sent me notes on fb saying I am only going to end up injuring myself or my son. I agree it is getting harder. Like you though I just want my son to know I can care for him. :)Behind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-90198428849703345222012-02-13T19:09:18.480-08:002012-02-13T19:09:18.480-08:00Thank you SO MUCH for sharing your story, you are ...Thank you SO MUCH for sharing your story, you are a soldier! My baby boy was just diagnosed with DMD, my brother also had it. Your boys are so lucky to have you!Anonymoushttps://www.blogger.com/profile/07653569198255120457noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-40889760677978324512012-02-09T13:50:57.876-08:002012-02-09T13:50:57.876-08:00Agreed. Such a profound thing to realize. :)Agreed. Such a profound thing to realize. :)OwlBeHonesthttps://www.blogger.com/profile/07239228334014925714noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-83938150200479139702012-01-16T11:15:27.857-08:002012-01-16T11:15:27.857-08:00I love this. Pretty funny. Matt and I have had som...I love this. Pretty funny. Matt and I have had some fun instances trying to get him certain places. I once got him in the bath tub at my parents house, that was fun. Mostly its him trusting me. I can lift him by myself, but it seems to get harder as time progresses. Its easier for us then using a hoyer even though we have one. But I do my best to make sure that he is still able to not full at a disadvantage just because he is in a wheelchair. :)OwlBeHonesthttps://www.blogger.com/profile/07239228334014925714noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-5804529714293424662012-01-14T00:28:47.117-08:002012-01-14T00:28:47.117-08:00This comment has been removed by the author.Behind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-65651580463414262252011-12-30T20:12:10.836-08:002011-12-30T20:12:10.836-08:00Allison I am very sorry for your loss. As you kno...Allison I am very sorry for your loss. As you know a mothers greatest fear and somehow you have to go on. Yes we are so blessed to be touched by such amazingly wonderful brave boys. Hugs to you, so glad that my words could be shared with you, thank you.Behind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-78611462680091092292011-12-30T19:14:31.583-08:002011-12-30T19:14:31.583-08:00Veronica hugs to you. That was most undoubtedly a...Veronica hugs to you. That was most undoubtedly a very difficult moment. As difficult as it already is living with Duchenne, we (our sons) still have to face the insensitivety of others. I have never really discussed death with my two sons who are 14 and 18. I have decided if they should ask I would gently talk about Duchenne and the expected future. It is such a hard situation and NO PARENT SHOULD EVER HAVE TO PREPARE THEIR CHILD FOR IT.<br /><br /> I too had a family member -a great nephew ask them blatantly when will they die. The anguish that moment caused has never really left me. My sons both cried that day. <br /><br />Yes we need to be mothers and warriors who with hearts of gold and the strength to persevere through it all. Hugs.Behind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-24027992409677217762011-12-30T17:03:54.032-08:002011-12-30T17:03:54.032-08:00I too recently experienced a moment were I wished ...I too recently experienced a moment were I wished I was more courageous in my reaction or lack thereof. It was on Christmas eve when an insensitive distant relative on my new husband's side asked blatantly in front of my 10 year old and 15 whom also have Duchenne MD, "WHAT IS WRONG WITH THEM"? My mother in law tells her about their "terminal" condition and this young 20-something year old says "DOESN'T TERMINAL MEAN DYING?". I was floored with anxiety then anger...I haven't even talked to my 10 year old about his life expectancy! I didn't say a word! Not one! :( still haunts me. I think I should have taught this insensitive child the hurt her curiosity causes. Sigh, I have sworn that I will no longer keep quiet from now on. XoVeronicaLynArtistryhttps://www.blogger.com/profile/05608311605896045303noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-66266101766055979622011-11-28T16:57:35.093-08:002011-11-28T16:57:35.093-08:00Fantastic - love your last paragraph. My 14 year ...Fantastic - love your last paragraph. My 14 year old passed away August 2010. He hated his DMD, and while he accepted it, I also let him have time to express those feelings about it. I will pray for your sweet boy. I remember looking into Blake's brown eyes, and thinking I was breaking his heart...but he already knew. These are some amazing kids, aren't they?<br />AllisonAllisonhttps://www.blogger.com/profile/05138260120624829133noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-44573101637868078482011-10-18T22:29:41.628-07:002011-10-18T22:29:41.628-07:00for some reason I never finished this until todayfor some reason I never finished this until todayBehind my smilehttps://www.blogger.com/profile/06972581858393230715noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-88649738455996799912010-05-24T22:07:38.472-07:002010-05-24T22:07:38.472-07:00Hi Rita,
I'm so excited for you and your boys...Hi Rita,<br /><br />I'm so excited for you and your boys. We also just bought a house and after only living here two weeks, it's amazing the difference we already see in how our son can maneuver through the house and how much easier it is for us to take care of him. Having more space relieves a bit of the pressure for our whole family because we're not right on top of each other. I too never realized how much room all the "stuff" took up...someone should add that to the "Welcome to DMD" book :-(<br /><br />Congratulations!<br />Christina AdamsonChristinahttps://www.blogger.com/profile/05171359457997179572noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-38226015689458053432010-04-06T18:03:21.666-07:002010-04-06T18:03:21.666-07:00well written, but i have to say, dont give up on f...well written, but i have to say, dont give up on friends just yet. my son austin has made some real keepers this year! his buddy ben has some issues (similar to autism) another friend collin comes over to swim in our pool a few days a week with austin , colins mom says he has no real friend because he is different (speech delay, a real cutie though). i think you just have to look for the kids who aren't that into playing sports, or bike riding, geeks are perfect LOL! they play video games, watch movies and talk just like "normal" boys. i have 2 with duchenne, 2 step kids, and a toddler. i am my kids mom, nurse, teacher, cook and maid. although i enjoy their company i refuse to become their entertainment or playmate, unless i absolutely have to. we are always the host for play dates but it is worth it to us! take care, wish we lived near by!Anonymoushttps://www.blogger.com/profile/00242042146269062351noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-24238894897928775152010-03-09T07:44:33.723-08:002010-03-09T07:44:33.723-08:00don't lose hope, make there lives as happy as ...don't lose hope, make there lives as happy as possible. PTC124 was one of a few different drugs they are working on. yeah, i agree, it a kick in guts alright. exon skipping i think is one way of going or using your bodies own stem cells ( after reprogramming ) is another way. there is big money invested by a lot of companies, they are not going to say " oh well, that's the way it is " no way, they want a return or the share holders will be less than happy. i never gave up, you can't afford to.....Andrewhttps://www.blogger.com/profile/11462253223068422696noreply@blogger.comtag:blogger.com,1999:blog-3457913521076392267.post-57549120402440624242010-03-08T03:59:23.918-08:002010-03-08T03:59:23.918-08:00yeah its sad watching them able to do less and les...yeah its sad watching them able to do less and less. when one door closes others open. my son just learnt to ride a bike when he couldn't do it anymore. we made a trailer that attached to a normal bike, he loved it. what i am trying to say (badly) is you have to adapt.you will always have the memories and they will do other things that make them happy. don't lose hope, there will be a cure.Andrewhttps://www.blogger.com/profile/11462253223068422696noreply@blogger.com