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Thread: growing up with SCI

  1. #11
    Beaker and Seneca,

    I am still upset and moved by your posts. I am glad that you both told your stories as they are so real and heartbreaking. There is never a 'good' time to have a SCI. They are all life-altering experiences at any age. My heart goes out to you both. I am truly amazed at how so many people with SCI overcome adversity to become strong again (emotionally if not physically). I admire and respect you all so much.

    Beaker - Yes, I have a daughter with SCI, but reading your post again, I see that you and Seneca are the same age as she is. I am a Grandma with three dear Grandsons age six and under (from our other daughter). (that makes me sound so old - I guess I am old). Karen had her accident almost a year ago on September 18th, 2001. My best wishes to you both.

    Darlene

  2. #12

    Beaker & Seneca

    I'm sorry for not posting the story of my life, it is a hard one like all other but mostly because when I got injured too many things came up w/ my family that I were to overwhelming, from my dad who wanted to throw out of the window because of my crying from pain, and so on. It's been a very rough road and with only my mom to keep me alive. I would tell yous 2 my life but, I don't feel comfortable posting it in a public forum. I appologize.
    I can talk all day if u want about the SCI related issues but, my personal life, I rather keep it private and buried away like i've done so far.

    All I can say is that u r very right seneca "Being happy shouldn't be miscontrued as having had it easy."

    Once again, sorry.


    ...and the soul afraid of dyin'... That never learns to live...

  3. #13
    That's ok Polett, I can understand not wanting to relive painful experiences. I felt uncomfortable exposing myself too, I hope it doesn't backfire on me. SCI can be devestating for a child in a dysfunctional family. It's sad because most people have the notion that disabled children are coddled, spoiled and given whatever they want but the statistics show that most are abused, neglected and unwanted. When I was in rehab. there were so many kids that had been abandoned. It became the hospitals responsibility to find "homes" for them because their parents had stopped visiting and couldn't be located. I became close to a girl there who had a mild case of SB. She was so nice to me and she had the best personality. She was always in and out of the hospital because her foster parents were abusive.

  4. #14
    Senior Member Erin81079's Avatar
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    POLETTE:

    First of all, You aren't the one I was refering to when I said that some people only tell how wonderful their life is, Sci people are lazy, what's there to cope with?, etc. I was referring to LindsayS. This is what she said when I commented that people in wheelchairs would used that Windskate thing for fun. I never called anyone lazy.

    There are some very lazy SCI's out there who will do anything not to have to do something.
    I'm not angry at anyone, this forum isn't the only thing on my mind all day. All these happen to be are opinions that I am expressing at the time. I don't NOT have respect for anyone on here.

    Erin: If when I woke up every morning, the only thing I had to worry about was how to get out of bed, I'd either be the bitteres fool around or the happiest dummie in life. I could also use all of that "wasted" time in making sure that a cure gets here yesterday instead of pointing the finger at those who try to make the best out of life.
    What the hell are you talking about, my life is definitely not wasted! I am moving on with life, and I don't sit here and whine all day. Besides being in this chair, I am very happy with my life, and who I am. I am very active and do as much as possible. What do I do? Well lets see, I take an art class once a week for 3 hours. I talk to underage DUI offenders, telling my story so they don't end up like me. I go to Church twice a week. I go out to the Movies with friends, and out to Dinner. I also go shopping. And I try and get up to Rehab at least 3 times a week to lift weights and swim. I do more now than I have in a long time, even before the accident. AND I didn't think that your life was all a bed of roses, I wasn't even talking about you in the first place, so don't take it too personal.


    Just because Seneca and Beaker wrote their stories and you didn't doesn't mean that I don't respect you. I don't even know you, so who I am to Judge. Just because I may say something on here, it doesn't mean I am going to hold that thought about someone the rest of my life. The only thing that I have ever seen posted from LindsayS is how wonderful her life is and how she wouldn't wish for anything more. GOOD for her, but she shouldn't expect everyone else to have the perfect life that she does. So you can think all you want about me being angry and condeming everyone that moves on with life with this injury. You obviously haven't read all my posts. I AM MOVING ON WITH MY LIFE, I'm not angry or bitter. Yea I hope for a cure, but I'm not going to sit and let life pass me by. I've got a life to live, so I am going to go ahead and live it, HAPPILY!

  5. #15
    Polett, no need to apologize. I totally understand too. I left out quite a bit about my life because it's just way too painful.

  6. #16
    Senior Member LauraD's Avatar
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    WOW! Your stories are amazing!

    As most of you know my daughter Heather was injured at 8 too. She is now 10. I am really hoping things have change with the views of people on children with disabilities. Heather has always been a tough little girl that doestn't look at anything as impossible. She is in 5th grade now. She eats her lunch in the cafeteria and hasn't thought about eating anywhere else. She has had some friends that have "moved on". They still talk to her but don't hang out together like they used to. She has quite a few friends that are still there and they don't treat her any different than they did before. A lot of the kids were worried when she came back to school following the accident but they realized right away that she was still the same person as before, her legs just don't work now. Maybe it is just her attitude.

    She does go out for recess. Today she said they were playing ball. She even is in regular gym class. They are playing football right now. They are working on throwing the ball. One girl in her class even got mad because she didn't get to be her partner.

    Maybe I do brag about Heather, but I think I have a right too. She is a stubborn kid that hasn't let this slow her down.

    I am working in the high school as a sub aide for a 15 year old girl that has C.P. I have noticed more of the things you talked about with her. The friends situation especially. She doesn't like crowds so she now eats in the library. There are other cold lunchers that eat in there too but she sits alone. I am really trying to bring her out of her shell and get her more involved. I had my interview today for the full time job and I am hoping I get it. She is too.

    At my interview today I talked about these things with the special ed coordinator. She even said that she doesn't see these things happening with Heather because she is so outgoing. I hope she's right, but thanks to you I will always keep my eye on things and make sure it doesn't. The best way for me to learn as a mother is to learn from those of you who have experienced it. Thanks!!!

  7. #17
    Senior Member LauraD's Avatar
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    Beaker,


    How was your little ones first day of kindergarten? I know it was hard on me when my oldest started school. I cried when I took him. I knew it would be harder when Heather started so I made my hubby take her. She is my baby after all.

    Are you ready for the wedding yet? I know it is coming up soon. I'll hopefully find time to get an email off to you this weekend. Life has been crazy here lately with finishing Heather's rooms and school starting.

  8. #18
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    Wow I am deeply moved.
    nuff said

  9. #19
    Laura, I do so hope Heather's growing up years aren't so difficult. The great thing is that she has you. You really are doing a great job as far as I can tell, and even though my parents did the best job they could do, they weren't educated like you are about living with SCI. I have to say that I am concerned about Heather when she hits about the 7th grade. But, since she is so outgoing, maybe she won't let her friends turn on her! And you know to look out for it.

    My sweetie's first day of kindergarten went well for her. She loved it. It was, um, emotional for me!

    25 days till the wedding. Gulp.

    It's been a while since we've emailed, but I've been following your posts here and at NM. So glad Heather's room and bathroom are done. That's SO important. And getting her those ponies - very cool!

  10. #20

    A couple of observations from an impressed bystander ...

    "Bystander" is another "walkism", to digress a moment...

    These are almost holy writings because they reflect the soul of the writers.

    Another point is that at middle school level, puberty and mate selection instincts begin to kick in. I personally think that "rejection" is loudest then.

    The descriptions of being treated asexually by parents, health professionals and rehab people are common in the SCI world. Ancient post boards, such as the old Spinewire and Circle of Friends, all indicated that parents have a particularly tough time dealing with the idea of rearing a sexual being with SCI. (the asexual treatment toward SCI people is quite common; virually every SCI person gets some taste of that treatment.)

    Modesty and SCI are mutually exclusive, darn near. It is easy to begin to see parts of your body with a different eye and feeling, compared to "normal people."

    Glad you all are here to contribut

    [This message was edited by topspin on Sep 10, 2002 at 11:38 AM.]

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