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Thread: CN Central: JUNE UPDATES!

  1. #11
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    https://bookpage.com/interviews/8890...s#.V1bAR_krKM8

    this is an interview with JoJo Moyers. I guess my opinion may be different than some but I watched the movie and it made me really think about the topic, and made me feel many emotions. I'm not saying it didn't make me feel uneasy about the ending. Think of all the movies we watch about topics that make us uneasy, or that we disagree with. It was very sad and maybe it will help others to see that even though someone "should" be happy and thankful to be alive they may have other feeling inside and that just having family and money may not be enough for them...Better mental health care is always something I see as lacking. You have to find a way to love yourself. I've lived with my daughter's disabilities for 19 years. They became more severe when she was 5. We didn't know if she walk or talk again. Maybe the fact that even though she lost so much she was still happy and strong in so many ways, I missed the fact that lots of individuals have a much more difficult time adjusting. And the reality is that this happens. I absolutely see the other side of this, and that it made it look TOO romantic. The book seemed to go into a little more depth about his pain but also about her research into what he could get out there and do. These were the plans that she had to cancel because he got very ill. There are going to be 2 sides to this of course. My hope would be that it opens up many many good conversations about this topic that may not have happened. Also that it will help some to seek help for someone in need of it. I absolutely see your side CPchick. You have a personal insight into this subject. You're facebook post was certainly warranted and well written. Of course I would have liked a different ending!!
    Mary Grace

  2. #12
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    ((((((Hugs to All)))))) ~

    ((((((Erin)))))) ~

    Good for you for stirring things up with your advocacy and bringing accessibility issues to the public using media. A TV star is among us! You are truly awesome, and I’m so proud to know you!

    Thank you for sharing your compelling and courageous Facebook post with us. I agree with every word you wrote.

    Better Dead Than Disabled

    In 1999, I joined my first on line discussion forum, a generic Epilepsy forum, with the basic “tree” format. Of course, I was very active (as I am here) in sharing, supporting, as well as seeking insight from others to help Michael. There was a strange assortment of people posting, several of whom posted as different people/different identities/gender.

    One of those people began attacking me about my Mothering skills. This person posted a horrid rant about me, stating that if I was a good Mother, I would put my son "out of his misery,” stop feeding him, and let him die, instead of allowing him to suffer. The poster called me “selfish,” “cruel,” “heartless,” and more.

    I replied to this poster, but I can’t recall now what I wrote. Much of it was anger, but some of it was directed toward educating this person about disabilities. Feeding via G tube is no more “life support” than orally consuming a sandwich or slice of pizza. It’s merely another avenue to provide nutrition to those, who can no longer swallow or safely eat orally. In fact, depriving someone of nutrition, because they can no longer eat orally, is cruel and heartless. Starvation is a slow and painful death process.

    Four months, after I left the generic Epilepsy forum, this person posted another scathing rant about me. A few of my remaining friends there responded, but I sat on my hands, because I refused to be harassed by this person.

    Better Dead than Disabled, as you said, Erin, is an attitude still held by many in society unfortunately. While I can’t judge Me Before You, having not seen it or read the book, I will say that it concerns me that the main character believes that life isn’t worth living, despite all that he has to make his life worthwhile. He is wealthy and privileged, so he has access to all of the care he needs and attendants to assist him in whatever he wants to do. Even falling in love doesn’t deter him from wanting to end his life. Perhaps his plight revolves around vanity ~ he's no longer the bon vivant, carefree, gadabout, sportsman, ladies' man.

    What message does this story send to people with severe disabilities, who have far less resources than this character, and are struggling and succeeding at living full lives? Does it reinforce the Better Dead than Disabled attitude among the general population? The “I wouldn’t want to live that way,” or “I could never do that,” attitude that many non-disabled people have?

    Does it romanticize or glamorize assisted suicide? Does it inspire empathy for “I’d rather die than try?” Does it soften the devastation that family and friends experience, when a loved one makes this choice?

    Making That Choice For A Loved One

    My sons had/have far more issues than the character in MBY and are unable to articulate verbally their choice about living with their disabling conditions. But they’ve made it clear, by their demeanor, and their unrelenting will to survive the odds, that they want to live. They both greeted each morning with a smile, a hug, and “I love you.” They are blessed to see The Big Picture, without the trappings of ego and false measurements of self worth.

    Jim and I had to face the most difficult decision any parent can ever confront. We had to decide whether Michael continued suffering and deteriorating slowly or should be allowed the opportunity to pass peacefully in comfort. After he was extubated, he rallied and continued fighting on his own for 5 days, before he passed. I believe that he didn’t want to leave us for many reasons. And he hasn’t, of course, as he surrounds us with his presence constantly.

    Naturally, this topic affects me profoundly, based upon my experiences. I believe that everyone has the right to make their own choices and decisions about their lives. So, I diligently try not to judge others. But, I am human, so it happens.

    I do have great empathy for those, who suffer and feel that they cannot continue with their Earthly life. I do recognize why people with terminal illnesses, who know that death is eminent, choose assisted suicide.

    Quality of Life is Subjective

    But I worry about promulgation of the concept that being disabled translates to "life isn’t worth living."

    As an advocate for persons with disabilities, I encourage positivity, inclusion, overcoming barriers, and equality for everyone.

    I want to see films made about persons with disabilities, who overcome the odds, demonstrate courage and conviction, and inspire others to live better lives. And I know that there are millions of those stories, including everyone here on CN and BT.

    I want to hear political candidates stand up for the rights and dignity of persons with disabilities, not mock and degrade them in front of thousands of people. Perpetuating the stereotype that persons with disabling conditions are valueless contributes to further discrimination.

    This is what we’re up against. This is our reality. It’s 2016 in America, and this is happening to the disabilities community.

    A story about someone, who gives up, when those around him are encouraging him to change the way he sees his life, and find meaning in it, beyond what he once knew, isn’t what we need right now.

    And I just joined you, Erin, in deciding not to see Me Before You.

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 06-08-2016 at 08:11 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  3. #13
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    ((((((Mary Grace)))))) ~

    You have read the book and seen the movie. I haven't. My response is based upon a gut reaction to the topic, and it's influenced by what I've read about the film. So, I truly hope that my response doesn't show disrespect to you and to your opinion of the book/film. Because I completely respect your viewpoint, and I understand where you're coming from with it.

    I absolutely agree with you that there is an urgent need to improve access to mental health care for everyone. Persons with disabilities should have counselors/therapists and opportunities to belong to support groups.

    My comment about his wealth and status regards how average people with disabling conditions do not have access to all that he could afford ~ including a mental health care provider. (If I'm correct that he was wealthy.)

    And you are right that money and privilege doesn't negate depression or the desire to end one's Earthly life. But money and privilege can buy opportunities that those, who aren't as fortunate, will be denied.

    My primary concern is that viewers of MBY, who have no experience with disabling conditions, might generalize that all disabled people are depressed, miserable, and wish that they were dead. You and I, all of us here, who know better, do not feel that way, of course. But there are many people out there, who do.

    I worry about devaluation of people with disabilities, because I live it everyday.

    We've been waiting since 5/20 for a PT for Jon, and just found out today from Jon's nurse, that incompetency in the PT department caused the delay. Jon is suffering with lymphedema, which is painful and can be fatal.

    In February, when Jon was struggling to breathe, on 2 ltrs of O2, and I had to beg for a suctioning machine, when ours malfunctioned, it took 9 hours to get one delivered to our home. A replacement for an existing machine. Jon's Medicaid refused to pay for it, because it wasn't pre-authorized.

    It's all about the bottom line. And the System is just waiting for Jon to die, so they don't have to provide him with equipment and services anymore.

    So, if Jon were able to express his desire to end his life, and we agreed, I'm sure that the System would be delighted.

    My concern is that MBY could negate the efforts of disability rights activists in their endeavors to create better care and support for persons with disabilities.

    How will this film impact the efforts of those, who are working toward greater understanding and inclusion of persons with disabilities? And people like me, a Mother, who must persuade every one, upon whom we rely for life saving measures, that Jon's life is meaningful and worth saving?

    Doctors and nurses have told me to give up on my children. Many, many times.

    Thus, my visceral reaction to this book/film.

    I hope you understand, Mary Grace, and that you do realize that I understand your point of view too.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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  5. #14
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    Rose, I completely understand your stance on this. I also agree with your concerns (this is why we share our opinions) I guess I didn't see this movie as having that kind of power which is probably wrong of me. I didn't look so deeply into it... (again probably wrong of me) Since it is out there and people are watching it, hopefully that's the attitude people will have with it. They will see it for what it was written as, a very romantisized "pro choice" movie, not that life isn't worth living with a disability. If it had been a different ending it would not be an issue. I absolutely didn't like that it ended the way it did, but the movie till that point was very light and funny even... A beautiful relationship developed. I was very surprised at the ending when I read the book because life did look good for the character. I'm so sorry Rose that you've dealt with such ignorance. Maybe I'm living in a world with "rose colored glasses" I see so much acceptance in our personal life I forget that people can be very ignorant to the life of disabled individuals. Gotta open my eyes a little... As I said this is why we share our opinions and have open discussions. Thanks for opening my eyes... I hope my opinion didn't offend anyone.
    Mary Grace

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    ((((((Mary Grace)))))) ~

    Your opinion certainly didn't offend me. As I said, I do understand and respect your point of view, and you've read the book and seen the movie, which gives you more insight than I have on the story.

    You are blessed that your community and professionals, who work with Kathleen, lovingly accept and treasure her. Not everyone can say that, including me.

    I've had nearly a half century of dealing with discrimination against my sons and their peers, fighting state and federal legislators to provide laws to protect our children/persons with disabilities. I listen carefully to political candidates' speeches for mention of persons with disabilities (along with other minorities), but they are typically ignored. In this election year, one candidate literally mocked the physical disabilities of a reporter to the uproarious laughter of that candidate's followers.

    Public perception of disabilities affects policy decisions, and devaluation of persons with disabilities results in budget cuts for services to meet their needs.

    So, I worry about a film, which might reinforce the negative perception of disabilities, that a disability means that life is meaningless and not worth living. I think many people, with disabilities and who are caregivers, feel the same way.

    Here's a group, which has been protesting for years ~

    http://notdeadyet.org/

    They have a lot to say about Me Before You.

    Having said all of this, I reiterate that I support the right to choice. And that includes the rights of persons, who choose to live with their disabling condition, to access to services to assist them in living full, meaningful lives.

    I'm glad that we can share our thoughts, opinions, and experiences about these issues, because we learn from each other. And thank you, Mary Grace, for sharing yours with us.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Rose thanks again for the eye opener. All of what you said certainly needs to be said about this topic. Your life experiences certainly make you a good judge of dealing with the misconceptions of life with and as a disabled person. I would hate to see these ideas go backwards also. If nothing else the movie has opened up a conversation which hopefully will be heard. I'm not sorry I saw it but I have had to search my brain for why I didn't see the ramifications of the way the topic was handled. I guess I got sucked into the emotions of it and not how it would effect other lives. As I said before I don't give movies the power(that I probably should) to make dramatic changes. I came a away mostly thinking what a good life he could have had he really needed help to see it and maybe he wouldn't have ended it.
    Mary Grace

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  10. #17
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    Rose, I don’t remember the number. Just slightly higher and now it is normal. What in the diet might cause that? As far as I know the test my relative took for neurons was easy though I have no idea what they do to treat it.

    To everyone: Thank you for your thoughts on “Me Before You”! I love hearing all of your different perspectives!

    If we tried to make every movie "politically correct" nothing would ever be made.
    This sentence right here is why I make my films! However movie makers still have a certain amount of responsibility in what they present to the public and I take this responsibility very very seriously.

    Imagine for a moment you are a teenager with some kind of disability.
    You, like most teenagers, are insecure in yourself. You just want to fit in.
    At school, you feel like an outcast. You can't go to many parties because the venues aren't accessible. Sometimes the others call you names. You missed out on a class trip recently because it was "too hard" to accommodate you. The teachers don't have the same expectations for your career prospects. You are not expected to go to university or indeed have a career.
    At home you rely on family members to help you with basic things your siblings were doing years ago. You hate it.
    Me Before You comes out. You've heard it's a romance and you like the look of the guy. He's disabled, like you.
    You see it. In the end, he kills himself because he'd rather be dead than disabled. People around you are dabbing their eyes as they exit the cinema. You catch one of them looking at you. "I'm so sorry," she says "It must be so hard." "I'd hate to be like that," you hear others say. They stop and stare when they see you.
    At school, people have seen it too. You hear them talk about it and sometimes hear your name mentioned. One day, you're heading back to class at the end of a break and you pass a group of classmates.
    "Hey," one of them says, "You seen that movie with the disabled person in it?" "Yeah," you say, hoping to be invited next time they see a movie. "Maybe you should do what that guy does and kill yourself. Better for everyone eh?" The words ring in your ears.
    "Maybe" you think. Like many teenagers, you've thought about it before.
    On particularly hard days, you think about the movie and what people at the cinema and at school have said. You're a burden. You're worthless. You're better off dead.
    One day, you go into the bathroom, take out your dad's pills and....
    Me Before You may be "just a movie" but its messages are extremely damaging and could have very real consequences. Shame on Hollywood. They should be doing so much better than this.
    I read a digital version of the book after seeing the movie trailer and I have to agree with every word CPchick wrote as well as what you wrote Rose. Starvation is a cruel and painful death. No one should have to ever experience that! I actually thought of Jon and had the same gut reaction of “This is SO WRONG!” while reading the book because I know how much Jon’s life has value and I don’t want the system to kill off Jon or people like him! On my film blog I got a response from a teenager who is newly diabetic,she felt depressed because she felt like a burden to her family, and she said my films helped her because she saw that her life could still be vibrant and full with diabetes. If she had seen “Me Before You” instead she might have given up on life. Then I think of my teacher with the stroke. When I saw him have his dizzy spells I was so afraid he was “suffering”. Here’s the thing: HE WASN’T. He knew how to handle it and with enough time his body and mind have adjusted to the physical effects of the stroke. He knew he was fine. He said "Sometimes I don't feel well but I was only minutes away from dying and I would much rather be disabled than dead. I just didn't want to die. I didn't want my children to be without their father." *It was not my place to decide whether he was suffering or not. Just like it is not a doctors place to decide whether our lives are worth it. I realize that able bodied people who become disabled people must go through a physical and mental adjustment to being disabled and depression is a perfectly natural part of this change for some people. Disability for many is often connected to something traumatic like a near fatal accident or illness. Nobody goes around thinking “I want to be disabled when I grow up”. Disability is hard. Acting like it isn’t hard is a lie. Disabled people can be depressed over things that have nothing to do with being disabled too such as the death of a child. So I have no problem with this movie depicting a depressed character. My major problem with this movie is the use of ASSISTED SUICIDE. I hate the way the subject was handled in “Me Before You”! I have always been against suicide and assisted suicide. I can understand why someone may want to commit suicide but suicide is never the answer. I have seen what suicide does to the people who loved the person who committed suicide after the death has occurred(members of my own family committed suicide before I was born and my family is still dealing with the emotional consequences now). When someone dies in a suicide a piece of all of their friends and family die along with them. One life effects the lives of so many others. Assisted suicide based on disability makes it seem like disability is a fate worse than death which could not be further from the truth. So I can NOT support the movie in theaters.

    I respect ALL of your opinions of course! I’m not trying to start any political battles here. Just discussing. No offense to anyone!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  11. #18
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    (((((((Mary Grace)))))) ~

    Our experiences form our reactions and opinions toward everything. Your experience with Kathleen has been one of involvement, inclusion, a community embracing her and loving her. Has any professional ever told you to give up on Kathleen? I pray not, and I don't recall you ever mentioning such a comment. Perhaps that is why you didn't see the potential negative impact of the film's statement.

    And, as I said, I've had nearly 50 years on the front lines. It's difficult for some to imagine what the attitude was toward children with disabilities 50 years ago. What life was like before we had IDEA, the ADA. When doctors were baffled and didn't know what to do with a child who had severe disabilities.

    As late as the 1980s, our state Superintendent of Schools publicly stated that educating special needs children was a waste of tax payer dollars, because those children will never become working, tax paying adults. He said, "They will always be a drain on our budgets throughout their lifetimes."

    We had to fight to pass all of the laws to protect our children's civil rights, including the Olmstead act, which closed down numerous institutions, and placed individuals with developmental disabilities in community-based residential settings.

    In our garage, we have boxes filled with reams of letters I wrote to elected officials.

    And I'm still fighting. Now, Jon is a middle aged man, classified by his physician as Palliative Care, and I still can't get a PT out here to address his lymphedema, and his last visit with his nurse was unauthorized. It's getting worse. He should be receiving everything he needs to be comfortable and safe in his own home, but the System figures he's on his way out, so maybe denying him services and supplies will speed up the process and save them money.

    Because of my experience, I can see the potential danger of a film like Me Before You in perpetuating the myth, among a general population unfamiliar with disabilities, that people with disabilities are miserable, bitter, feel like they are a burden, and want to die.

    I grew up during a time, when TV shows with characters in wheelchairs were typically presented as angry, cranky, and annoying. With the exception of Ironsides, I suppose. But in the 1940s, the movie series, Dr. Kildare, had the grouchiest old geezer in a wheelchair full of disdain and bitterness.

    These are stereotypes we need to erase.

    And, when a political candidate can ridicule a reporter with disabilities, that's a Red Flag that too many people in our country/society still regard people with disabilities as worthless, disposable, embarrassing, foolish, scary ... the list is long as to what this conjures in the minds of people.

    We're not in a safe place as a community. We still have thousands of miles to go to reach a destination of acceptance and equality for people with disabilities. So we need to be vigilant about any negative messages being spread far and wide for public consumption.

    And while you may not take movies seriously or are affected on a deeper level by them, others are. Film is a powerful form of persuasion. That's not a criticism of you, Mary Grace. I love you for your innocence inspired by Kathleen's positive impact on those in your circle. But others, who don't have your experience, or who have no experience with people who have disabilities, will have a different take away from this film.

    I just pray that you know that I truly appreciate where you are coming from in this discussion and that I completely respect your opinion, thoughts and viewpoint.



    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    ((((((funnylegs4)))))) ~

    I have a feeling that we're all on the same page on the issues raised by MBY. And we all love and respect each other, so we're freely communicating our thoughts and opinions, without judgment of each other.

    I'm so very sorry that your family suffered losses from suicide. I've known several grieving parents, whose children died by suicide, and I know from them the torment, the guilt, the "what could I have done to prevent this?", and the anguish they experience for the rest of their lives. Tragically, their children were severely mentally ill and did feel that their lives were worthless. One young woman was addicted to meth, which drove her to suicide. Their stories are all different, but their decisions were the same.

    And when we say that suicide is not the answer, it may be because we're not at risk, or we've never been to that dark place beckoning for release. If we haven't been there, we can't fully comprehend that compulsion.

    So, I want to be very careful that I do not condemn or vilify anyone, who chooses suicide.

    That makes it complicated when discussing MBY, since that is the ultimate choice of the main character. My objection to the film is principally on how the general public will respond to it, i.e., equating disability to a fate worse than death. This is a commonly held viewpoint by the general population, and I do not want it to be reinforced by this film, which may romanticize and glamorize the character's suicide.

    Another objection I have with MBY, as I do with many other films featuring people with disabilities, is the casting of able-bodied actors to portray a person with a disability.

    So, funnylegs4, here's where you receive a standing ovation:



    It's time for more positive messages, images, role models; more uplifting stories; more true heroes. In fact, it is long overdo.

    American Sniper grossed millions and was nominated for Academy Awards. Where is the Academy Award winning film about a wounded warrior, who battles his way back to a full life? Starring a wounded warrior in the lead role? Where is that movie?

    I want to see movies about you, about Erin, about Kathleen, Tyler, Nick, Caitlin, my sons, and all of our courageous CN children and their parents. Overcoming the obstacles and odds against them time after time after time.

    I want the world to see the other side of disabilities, where hope lives and possibilities are waiting, where love and community work together for positive outcomes.

    The world that we see.

    Thank you, funnylegs4, for doing just that.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Just to put my 2 cents worth in here. Personally I hate movies like this. Generally written by someone who has no clue and acted by perfectly healthy and usually young, beautiful people who will get up from their fake wheelchairs, move on after the movie scene is done and never give it another thought. As a family living with a severely disabled young adult who fights every day to LIVE regardless of what he lacks; what he is unable to do; places he is unable to go; activities he is unable to participate in; loved ones he will never be able to verbally connect with; every day existence that is a struggle, daily pain and relentless seizures; total dependence on others for everything, and yet he fights back. He wants to be here. Why? I have no idea. He LOVES life or he would simply give up and go. He is not a pound puppy that we can simply eliminate because it is too hard for him or for us to carry on. That is not an option. What is an option is to be sure his quality of life is the best we can give him. Daily telling him he is loved, cherished and accepted by voice and by touch. He speaks volumns every day without ever saying a single word. He teaches profound lessons to all who have a heart to hear. He is real and lives in a real world and will continue to do so until that day that the Lord calls him home. His is a story of courage, endurance and grace.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

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