tag:blogger.com,1999:blog-27546414.post283600816347753720..comments2024-02-22T22:56:17.805-08:00Comments on Outrageous Fortune: What scares me most about my son's disability? You. Yes, YOU.Shastahttp://www.blogger.com/profile/01013565031179610593noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-27546414.post-8557894793235827102012-02-04T10:43:32.067-08:002012-02-04T10:43:32.067-08:00Yet again - I totally totally understand EXACTLY w...Yet again - I totally totally understand EXACTLY what you are saying. I give some people the death glare and I am ADAMANT that nobody underestimate my kid or treat her differently. Her classmates are so accepting and wonderful that sometimes when we're out and about and someone isn't as amazing (usually it's with good intentions but potentially hurtful), I kind of get caught off guard. The story about Amelia made me sick to my stomach because yup, that could be MY kid or my friend's kid or...yeah. Anyway, I'm glad I found your blog - and I'm following you on Twitter now too. :) Also, while I'm here rambling, I also found your book list and have requested some from the library and wanted to suggest to you three books: Schuyler's Monster, My Baby Rides the Short Bus (which is a compilation), and Road Map to Holland. None are directly about CP, but all gave me things to think about, tools to use, and a feeling that I wasn't alone. Best!Marlahttps://www.blogger.com/profile/16809949267562980590noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-42698243159069080452012-01-17T14:15:41.879-08:002012-01-17T14:15:41.879-08:00I only had to read the title of this post to know ...I only had to read the title of this post to know where you were going. You are so right!<br /><br />Korin - All I have to say is a big A-MEN!Andi of Bringing the Sunshinehttp://www.bringingthesunshine.comnoreply@blogger.comtag:blogger.com,1999:blog-27546414.post-31107691369131118472012-01-16T09:46:21.087-08:002012-01-16T09:46:21.087-08:00Yes! Along with "color, gender, sexual orient...Yes! Along with "color, gender, sexual orientation, etc." they should add "cognitive ability" or something to that effect.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-85512085940216106382012-01-16T09:44:52.943-08:002012-01-16T09:44:52.943-08:00Right on, sister. Preach it.Right on, sister. Preach it.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-69065593804041293032012-01-16T09:44:25.315-08:002012-01-16T09:44:25.315-08:00Wow, I'm deeply honored at being compared in s...Wow, I'm deeply honored at being compared in some small way to MLK Jr. That guy is my hero! And what a cool family thing to do before MLK Jr Day.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-72040161483642446582012-01-16T09:41:50.317-08:002012-01-16T09:41:50.317-08:00Same here. If this doctor were telling me I had to...Same here. If this doctor were telling me I had to let Malachi die I think I would flip my shit.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-28263155983797802952012-01-16T09:36:46.436-08:002012-01-16T09:36:46.436-08:00Thanks for sharing that link. I'm so glad your...Thanks for sharing that link. I'm so glad your doctors have never suggested anything like that!Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-58047461513937982622012-01-15T19:26:53.598-08:002012-01-15T19:26:53.598-08:00I've been furious since reading this story. I...I've been furious since reading this story. I'm so mad I can't think. I hope they make a new law forbidding this type of discrimination. Great post!Bea, OThttps://www.blogger.com/profile/08301207485195668332noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-73578913902159281832012-01-15T17:41:22.305-08:002012-01-15T17:41:22.305-08:00Thanks, Marcy! I know, she's sooo cute!Thanks, Marcy! I know, she's sooo cute!Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-59255035689917684662012-01-15T16:56:34.571-08:002012-01-15T16:56:34.571-08:00This is such a great follow up to our family dinne...This is such a great follow up to our family dinner read of MLK's "Letters from a Birmingham Jail" Injustice, hate, in-equality have been around too long. I'm having my 12 year old read your post and make the connection. Thank-you. HeatherAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-27546414.post-47184472172558554662012-01-15T15:54:39.235-08:002012-01-15T15:54:39.235-08:00I was completely shocked with I saw that. I have a...I was completely shocked with I saw that. I have a 36 y/o brother with downs syndrome...I can't imagine someone telling me his life has no value. <br /><br />Brooke<br />www.TheAnnessaFamily.comThe Annessa Familyhttps://www.blogger.com/profile/11929967116411498173noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-4535255593345830642012-01-15T15:12:02.064-08:002012-01-15T15:12:02.064-08:00I blogged about this yesterday too. As someone wi...I blogged about this yesterday too. As someone with a 'mentally retarded' child waiting for a kidney transplant I was horrified to read this story.<br />http://thinkingofstartingablog.blogspot.com/2012/01/photo-day-day-15.htmlAlisonhttps://www.blogger.com/profile/09793960049542281502noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-6680424648279745902012-01-15T14:15:32.452-08:002012-01-15T14:15:32.452-08:00Well put as always, Shasta! And thank you for the...Well put as always, Shasta! And thank you for the link to the little girl's video - oh my gosh, she is the cutest!!! Made me smile.Marcyhttp://our3littlemiracles.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-24507809514733905162012-01-15T12:40:09.891-08:002012-01-15T12:40:09.891-08:00Maybe. I just hate that he might be denied the cho...Maybe. I just hate that he might be denied the choice.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-88208410634547326212012-01-15T12:38:34.500-08:002012-01-15T12:38:34.500-08:00Totally. I don't understand at all what right ...Totally. I don't understand at all what right they have to say they're not going to do it. If insurance will pay for it, if they think the patient has a good chance of surviving and if the kidney donor is willing, I just don't see any place for them to judge.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-20119006049340987632012-01-15T12:36:43.995-08:002012-01-15T12:36:43.995-08:00Love you too Mare-bear.Love you too Mare-bear.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-45414803759067096172012-01-15T12:14:35.386-08:002012-01-15T12:14:35.386-08:00Yeah, but mainstream education sucks for everyone....Yeah, but mainstream education sucks for everyone. Including alter abled folks. <br />Him being who he is is a blessing in disguise for everyone's life he will touch. <br />Kids and adults are mean. Period. His brother may get made fun of MORE than him. Just remember: fuck those people.T$noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-12516032881662198812012-01-15T11:29:52.633-08:002012-01-15T11:29:52.633-08:00What bothered me most was the fact that he said th...What bothered me most was the fact that he said they wouldn't do it even if it was a family or friend who would donate - I get that they have to make criteria for receiving transplants off the nationwide donor registry, because otherwise they really are just playing G-d, deciding who lives and who dies. Not that I agree that intellectual disability should factor in - because that's saying "this person will not contribute anything useful to the world, thus the world won't suffer if they die", and honestly, how many people actually offer something to the world that will be remembered after they die? But fine, I get they need to make those rules.<br /><br />But to say that a person can't willingly say "I want to donate my kidney to this little girl", that's just wrong. What is it to them, if a donor wants to risk their health and life to help this little girl.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-27546414.post-87751332481482258682012-01-15T11:26:48.440-08:002012-01-15T11:26:48.440-08:00"Knowledge of the complexity of each individu..."Knowledge of the complexity of each individual on this planet, an understanding of his or her basic humanity and the acceptance that ALL people are owed love, respect and a place in society." I love this. Love you Chi Chi, look forward to breaking down barriers with you.Maryhttps://www.blogger.com/profile/02840780538588423887noreply@blogger.comtag:blogger.com,1999:blog-27546414.post-70028226421626409212012-01-15T11:02:11.559-08:002012-01-15T11:02:11.559-08:00It turns out there's also a petition to sign t...It turns out there's also a petition to sign to urge CHOP to give Amelia the transplant:<br /><br />http://www.change.org/petitions/executive-vice-president-and-chief-development-officer-allow-the-kidney-transplant-amelia-rivera-needs-to-survive<br /><br />Please sign it.Shastahttps://www.blogger.com/profile/01013565031179610593noreply@blogger.com