Happy Birthday deserious! You are an amazing woman and I am so much richer for having you in my life! I hope you are recovering well and that if we can help you with anything you will just say the word!
Replying to Veda's post reminded me of a wonderful Gussie milestone. She got in trouble at school yesterday for talking to her friends during circle time! Yup, after saying over and over that her expressive language skills were holding her back, the teacher in the preschool component of her school (not our beloved Language Says It All (LSIA) staff) asked us to talk to Gus about not talking during circle time. She has a couple of close friends at school and apparently they chit chat all the time! Now if LSIA can afford to stay at that school there is no excuse they can use to keep Gus from going on into the next classroom this summer/fall and that would buy us some time to figure out wtf we are going to do for her for school.
Okay, why is that now that we are down to the freaking wire and I still have plenty to do on my "needs to get done to go" list, and we are all fighting some snotty, coughing crud, why now do I decide it is a good idea to sew some more crap for my kids? Luckily I didn't let myself get away with it yet, although I keep trying, you know seeing as how all of that material is sitting right there and it would be so nice to get a nice handmade jumper from mama and a Knight's shirt of mail. Oh, will I just STFU already!
My minor irritation at my man quickly melted away when I went out the door with the kids to discover SNOW!!! coming down in New Orleans! We now have about a 1/2 inch of snow on the ground. SNOW! It is supposed to keep snowing until 2 or 3pm, big, heavy, sticky flakes of SNOW! Earliest measurable snow fall for New Orleans! Kids are over joyed! I will be posting pictures later, oh yes I will! Right now I am going to make a hot beverage and enjoy the view!
Thank-you. You all know who you are. You have touched my family's heart in a very deep way. Thank-you.
Oh, and Leslie, the longer one is the one that got to me (especially your threat). Never doubt your wonderful long rambling ways, they are always the most wonderful.
I would write more, but my arm frickin hurts! I think it's tendonitis but I'm not sure. I also tweaked something yesterday and now it hurts up to my elbow and the wrist pain is sharper when I move my fingers. Ouch. Anyone know anything about homeopathic or herbal anti-inflammatories? Anyone ever use a wrist splint? Ouch! I want to clean my house and type again damn it!
I wish I had known of Harriet McBryde while she was still living. She sounds like a most remarkable woman.
A Life of Quality
By LAWRENCE DOWNES Published: June 12, 2008
In “Parting the Waters,” his history of the early civil-rights movement, Taylor Branch recounts how a teacher of Gandhian resistance, James Lawson, would tell his students not to curl passively into fetal balls when segregationists came to beat them up. It only made them more brutal.
“This was a way to get livers kicked in and backs broken, he said, recommending that resisters try to maintain eye contact with those beating them.”
I thought of that when I learned of the death of Harriet McBryde Johnson, who looked at the world with an unflinching, sometimes withering, gaze. What many saw when they looked at her was a scrawny woman with a twisted spine who got around with a power wheelchair and lots of help. What she saw was a world that refused to make room for the severely disabled, one that looked at people like her — if it looked at them at all — with horror, hostility, condescension and pity, a sentiment she hated.
Ms. Johnson, a lawyer who was 50, died on June 4. She was an eloquent defender of the rights of the disabled. She came to wide attention through The New York Times Magazine, in essays she wrote about her confrontations with the philosopher Peter Singer over his defense of killing disabled infants at birth.
Ms. Johnson, an atheist, was unmoved by religious appeals to life’s sanctity. Instead, her rebuttal boiled down to a simple: How dare you? How dare you decide that certain people with limitations are nonpersons with no right to exist? How dare you presume to define “quality of life,” for me or anyone else, to set the value of a disabled life lower than yours, or to conclude that such a life lacks the potential for happiness and dignity because you cannot imagine how it could?
The disabled certainly suffer. But everyone does, Ms. Johnson argued, and if the disabled face extra hassles and indignities in life, well, remedies for those things are all possible, and should be provided. Instead, the world is run by and for the nondisabled, and those who don’t measure up are infantilized, ignored and stockpiled in institutions that Ms. Johnson called “the disability gulag.” She feared being sent to it in her later years.
Ms. Johnson was enraged by injustice, but not susceptible to hatred or despair. To her, Mr. Singer was a monster, but she realized that the unenlightened also included many of her own friends, colleagues and relatives. She decided that “it’s not in my heart to deny every single one of them, categorically, my affection and my love.”
Here I am posting our travails again. After drinking some for the neighbors, Gus ended up being up until almost 1am, and puking. She had a very rough night, with her fever drifting from 100-103, so after she puked up this morning's meds and had a dry pull up for the first time ever, we decided to head back to the hospital. James took her, which I hate, but truthfully I can't carry her 35 lb frame that far without fear of dropping her limp little self. Now I'm sitting here waiting to hear and waiting for Eli to wake up. He ended up awake until about midnight due to all of Gussie's mania and screeching. Well, we are on day 4 post op so I assume she's got to start feeling better soon right?
In other revolting news, my brother sent me this link to a very interesting article on yet another incident of the Bush regime using smoke and mirrors to cover a particularly slimy move on their part. Oh, and Sabrina this time we even managed to dump on Finland this time around.
We report to the hospital at 9am tomorrow and Gus will probably be operated on around 10:30-11. Any and all good wishes, thoughts, vibes would be so very, very appreciated. I would feel very good walking her in there knowing I had the mamas all behind us.
Since Ceres asked, this is a link to the petition that someone started recently. I'm not thrilled with her wording, but I know that the bottom line isn't to push a pro-life stance, it is to push for better education of the medical community so that hopefully expectant parents will get some sort of balanced info/education. Anyone is welcome to sign the petition http://www.thepetitionsite.com/1/DS-advocacy
I know that Coldbeansoup posted this notice in her journal, but I wanted to post it here too, in case anyone was interested, there are so many fine writers on my friends list, and so many voices that I know I would like to hear more from.
Call for submissions: My Baby Rides the Short Bus – an upcoming anthology to be published by PM Press (Winter, 2009)
We are seeking submissions from a diverse group of parents rising special needs kids who feel marginalized by their subculture status (economics, lifestyle, orientation, religion/atheism) and underrepresented in print.
Got tips on how to stay sane during the IEP process when you don’t believe in the system to begin with? Felt you had to hide you radical political books while the Early Intervention Folks come over? Found yourself stuck a mainstream world of special needs parenting that you don’t fit into?
Submit your stories to a upcoming anthology that features writing from parents in the know about what it's like to raise "special needs" kids -- with no sugar coating or the 'you will dream new dreams' kind of crap we're subjected to by mainstream media. Unfortunately we can’t pay, but all contributors will receive two copies of the book.
Topics we would like to see covered include (but are not limited to): • Experiences with helpful or clueless doctors • How not to leave your politics at the door and still work the system • Care providers and how they help us (when they show up) • Community support or lack thereof • The asinine things people say you • Challenging people’s assumptions • Keeping yourself sane while caring for your kid’s needs • The politics of inclusion • Fighting city hall/demanding more access & services • Kids with special needs growing older • Alternatives to group homes and institutions • Politics behind professional care-giving • Alterative treatments: the good, the bad, or the rip-off *Also, we’re seeking suggestions for good resources/services state-by-state or on the national level. Please send those to the email listed below.
Send 2,000 to 5,000 word submissions by May 15th 2008 or questions to: shortbusbook@yahoo.com Essays must be typed, double-spaced, and paginated. Please include your address, phone number, email address, and a short bio on the last page.
Editors: Yantra Bertelli, Jennifer Silverman and Sarah Talbot, who are parents of “special needs” kids.
I love James, truly I do and I want to be kind and loving towards him, but sometimes he just annoys the shit out of me. Right now he is in the kitchen yodeling. Yodeling. I am so NOT in the yodeling mood right now.
Waking up to this, http://www.nola.com/speced/lastchance/multimedia/flash.ssf?flashlandloss1.swf yesterday morning was rather hard. First of all it's just flat out depressing that we could have destroyed so much in such a short time, it's frightening to realize just how much closer to the gulf we actually are, and I could literally hear our house equity falling away as I watched the interactive graphic and read the Day 1 story. I am posting it here and at rmc because I would like people to be aware of how much damage can be done in such a short time by destroying wetlands and how vital it is that they be protected. For the american mamas I'm posting because there will be many battles in congress over whether to fund and how to fund and which program to fund to try and save/repair some of these wetlands and many senators and congress people from states far from Louisiana will not be interested in funding any such project and we will need their constituents to remind them that it is the right thing to do. I just hope they don't fight too long and that they pick the right program so that maybe, just maybe we won't end up tanking in the worst case scenario.
Just to clarify, I actually really like making my own patterns and have done it for mardi gras costumes pretty successfully for the past couple of years so I figure I can take the next step and just start making my own patters for regular clothes (uh, meaning without the sequins and sparkley trims). I have a bunch of old patterns that I have pulled out and refered to when trying to figure something out, but basically I really like the challenge.
Okay, we really are not what you would call sports people, nope, not at all, no organized sports at all, why are we hosting a football party for families? Please somebody talk me down! My god what's next???? My child is running through the house yelling about somebody named Reggie Bush and somebody else called McAllister, I vaguely remember hearing about Bush on the news a couple of times, but as for the other guy, well I can only assume he is another player. Shit, if they win that means we will have to watch the Super Bowl this year, something we have never, ever done before. Okay, well, Geaux Saints!
Please say a prayer for Helen Hill. I only met her a few times, but she was a wonderful, vibrant woman and her boy, Frances is about the same age as Gussie. She and her husband loved New Orleans and were trying so hard to make a difference here. This just isn't right. It is scary, wrong and just so very sad.
Independent film maker killed in the Marigny
10:12 PM CST on Thursday, January 4, 2007
Ben Lemoine / Eyewitness News Reporter
A makeshift memorial marked the spot where one life ended Thursday and two others changed forever.
(AP Photo/Bill Haber)
New Orleans police officers investigate the scene of a shooting in New Orleans, Thursday, Jan. 4, 2007. Officers arriving on the scene at 5:20 a.m. discovered a man kneeling at the front door holding a 2-year-old boy in his arms. The man had been shot in his right hand , right cheek and left forearm. The boy was not injured. A woman who died at the scene was shot in the neck.
When police arrived at a small shotgun house in the Marigny Thursday morning, they found a man shot three times, holding onto his two-year-old son. His wife lay dead next to him with a gunshot wound to her neck.
“I'm just sick to my stomach to see that something like this happened this morning, I'm sick, I'm physically ill. I'm really mad,” said Helen Gillet, a friend of the couple.
Paul Gailiunas, 35, is a doctor who opened a charity clinic for poor people. His wife, Helen Hill, was a Harvard graduate and independent film maker.
The couple wrote songs together that Paul played in his band “The Trouble Makers” and they were known throughout the neighborhood for walking their son Francis and their pot-bellied pig “Rosie.”
“Both Helen and Paul are both very community-oriented people where they really want to help this city and want to help people live a more uplifting life, positive life,” said Gillet.
The couple moved to South Carolina after Hurricane Katrina flooded their house and Paul’s practice, but another non-profit medical clinic convinced them to come back, so Paul could continue his efforts to give healthcare to the needy.
“He was just that type of physician. He cared about people. And I've met a lot of doctors in my time, but you didn't see that... it was just an unordinary characteristic that you see in a physician. He cared!” said pharmacist Alfred Jordan.
Many speculate that care may have led the couple to open the door to the wrong person.
“They're the kind of people, that if somebody knocks on your door at 5 o'clock in the morning, they'd be like there must be an emergency. How can I help?” said another neighbor and friend.
Police said Paul Gailiunas was in stable condition and two-year-old Francis was not injured and was staying with family friends.
Some residents in the Marigny told Eyewitness News they are fed up and are organizing a rally against crime.
They’ve asked all concerned people to meet at the Sound Café Sunday at 1 p.m. and plan to march to City Hall to demand officials address crime more aggressively.
Police say their biggest problem is getting help from the community, and said that of the past six murder cases in the area, there were no witnesses who came forward.
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leylah's journal
