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Thread: Is it always going to be this way?

  1. #1
    Junior Member
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    Is it always going to be this way?

    I have been muling over the thread on cure forum that titles 5 years. I go from frustation, to sadness to hopelessness. When my son was hurt 4 1/2 years ago, we built on an apartment for him and have cared for him along with both me and my husband caring for him. He is c-5 complete and needs lots of care. He is also 6' 8" tall and hard to move at times. Most of the time we cope fairly well. We are lucky in that there has never been a time when we both feel like giving up, but at times hold each other up!
    What has gotten me through some of the diffuclt days is the hope that this is not the way the rest of our lives will be played out. I have always kept the dream alive of a retirement with my husband and traveling, visiting our children and grandchildren. We live in a very rural area and long ago decided to not ask for help for our son, he spends most of his days on the computer and watches tv. The thread on cure extinguished my hope. I now know that it was foolish of me to dream and that my life will stay in this quagmiur for eternity. Thanks carecure. I think of all the times I pushed my son to get in the standing frame and to work hard at therapy, telling him he was going to get better some day with regret. I will do so no longer. You have killed my dream.

  2. #2
    Senior Member Clipper's Avatar
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    Hope means different things to different people. As I said in another thread, hope to me is like a distant light. I may or may not reach it in my lifetime, but it's there. Some days, I need that light to burn brightly. Other days, I don't look for it all.

    Symbolism aside, depending on hope to get you through each day can be very dangerous. Your son needs to resume his life and build a future. He needs stimulation and motivation to get an education, a job, a career, a family, a home, hobbies and friends. These things are not dependent on walking again. If your dream involves nothing but your son walking again, each day that he doesn't will be nothing but a nightmare.

    The thing that keeps me sane is the ability to keep hope in perspective. My goals and desires are not linked to walking again. Your son, even at C5/6, is capable of living independently and doing more than watching TV all day. His motivation should be independence and the enjoyment one gets from life by having the things I mentioned above. If his motivation revolves solely on hope, he'll have nothing but disappointment until a cure finally comes.

    My mom holds more hope for a cure than I do. But I know that I've brought her immense happiness by struggling through the past 15 years to build my life despite my injury. I didn't want her to look at me and feel sad. I wanted her to look at me and feel proud. I didn't want her to think that walking was the only way for me to take steps in my life.

  3. #3
    Awesome post Clipper! Very well said.
    Your mom must be proud.
    SoulMate

    We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

  4. #4
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    Wow, beautifully said. I will say that you sound like a son to be proud of.

  5. #5
    Senior Member dogger's Avatar
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    Farm Mom , please check your Private Topics .
    thank you ,
    dogger

    every day i wake up is a good one .

  6. #6
    Dear farm mom,
    I too feel that you should take Clipper's advice to heart. Progress in independent living can come slowly, but there seems to be no reason not to push for it. It could be good for your son and the whole family.
    Christopher Reeve has done wonders for the whole family of people who have SCI, but it is unfortunate that so many people heard and believed his original time estimates for a cure. Progress is being made, albeit slowly, and even then it will not be a magic pill, but a lot of work.
    I would suggest trying to get rehabilitation help from one of the 16 model spinal cord injury centers. I realize that they aren't around the corner, but they should be able to help with your son's, as well as your own, independence.
    Good Luck,
    Carl

  7. #7
    Junior Member
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    Thanks for the comments. Saddness is something that doesn't go away however. I will think about what has been said here,especially Clippers, but it is hard to get him to "get on with life' when he refuses to do anything but want his old life back. How did others do it? What gave you the motivation? He has lost all his friends and he never had a serious relationship with a girl before the accident,. and has shunned any since., Anyway, thanks for listening!

  8. #8
    Senior Member Clipper's Avatar
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    Originally posted by farm mom:

    Thanks for the comments. Saddness is something that doesn't go away however. I will think about what has been said here,especially Clippers, but it is hard to get him to "get on with life' when he refuses to do anything but want his old life back. How did others do it? What gave you the motivation? He has lost all his friends and he never had a serious relationship with a girl before the accident,. and has shunned any since., Anyway, thanks for listening!
    Sadness may always be there but it need not dominant your life, or your son's. I think the "busier" you become - going to school, working toward independence, etc - the less focused you are on how SCI has devastated your life. People handle SCI in different ways. For me, setting small goals and working to achieve them is more motivating than thinking about cure 24/7. I chose not to live with my parents after my accident (I was 19 when released from rehab). In many ways, I think that was very motivating. I had to forge ahead with my life. I greatly desired to have my "own" things - my own home, etc. I know everyone's situation is different, but your son needs to understand that a world of opportunity awaits him - despite his injury.

  9. #9
    This is one of life's toughest challenges. What can you say to a mother whose heart is broken.?

    Clipper, any chance that your mom could talk with this mother over the phone? I am just thinking that a little peer support might help.

    Rock bottom is a relative to how high you bounce when you hit.

    PN

  10. #10
    Hi, Farm Mom - You mentioned that your son is on the computer all day - does he know about this site? I know, 'you can lead a horse to water' - but he might benefit greatly from seeing how others are dealing with life; even if he doesn't post, getting him onto Carecure may ignite a spark.

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

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