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Thread: the feeling that I cant stand this anymore

  1. #31
    Senior Member poonsuzanne's Avatar
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    Dr. Young, Thank you very much! You make my day! :-)

    Lynnifer, I do feel for you in every way. Anyway, Karen's mom has already said what I want to say to you. You are incredibly strong, your courage deserves our support and respect.

    Bigbob,

    From your previous posts regarding wheelchair basketball, I have already noticed that you are such a devoted father and your great love for your son is enormous. I recognize your great love in my own husband's love for our son Richard as well.

    From time to time, he will vent - the feeling that he can't stand this anymore - to me only but not to any one else. Unfortunately, most of the time, he chooses the wrong time to do so, like before sleep or in the middle of sleep. Then I will say, "I'm sleepy, let's talk about it tomorrow." If he chooses the right time to talk, like when he wakes up in the morning, I usually, deliberately, try to maintain a very strong and positive posture and offer him the best encouraging words I can. After he had committed the same mistake over and over again, I told him the honest truth - that if he started this conversation at the wrong time, I wouldn't be able to sleep anymore, coz his words would awaken the weakest part in me.

    I have also seen him cry so painfully, the only one time in our entire acquaintance, after hearing the first doctor ever to tell him that his son may never walk again!

    Best wishes to all of you
    Suzanne

  2. #32
    Suzanne: Thanks for what you said. I think some people on the boards still don't understand what drives me. I may have made some enemies here, when I did those posts on wheelchair sports.
    bob

  3. #33
    bob, to my knowledge, you have not made any enemies on this site. We all respect you for your passion and commitment, and want to encourage you.

    Suzanne and Jesse's Mom, let me bring up another issue that has often bothered me. In some cases, parents become more active for the search of therapies than their sons or daughters. In part, this search helps settle the inner pain. On the other hand, it occasionally leads to disparities between what the person with spinal cord injury is perceiving and what the parents are perceiving. There will be times when the person with injury is not ready to take time from their lives to understand or investigate therapeutic options. There will also be times when the search for a cure is less important or have a lower priority. Communication is so important to prevent this gap from occurring.

    Wise

  4. #34
    Jesse's Mom;

    Our sons are so similar in age, injury, and the emotional characteristics of their battle with SCI. Noah, aka Buckwheat, visited Project Walk. I do not know if he met Jesse or not.

    I am moved by your courage to open this topic. Below you will see an article I authored in early November for our small town newspaper in Hood River, OR. I trust it is appropriate for both the Holiday and the thread of this forum.

    Thanks,
    John Smith

  5. #35
    Senior Member Jesse's Mom's Avatar
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    John,
    I talked to buckwheat quite a bit one night in chat. He told me he visited PW for a few days. Had Jesses roommate as a trainer "on the wall", but Jess didnt meet him. He is there in the mornings and Noah was in the afternoons, I believe. Noah is the only one I have heard say they liked the wall. John said he was a really nice kid. Hope he gets to go to PW.

  6. #36
    Senior Member poonsuzanne's Avatar
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    Dr. Young,

    I believe the majority of the persons, apart from a few isolated cases, who were injured are as keen as their parents in pursuing the research for new therapies and not to mention the cure. This is at least the case with me and Richard, we always share the same goal and we never have any disagreement in the path of doing so. Thanks for your caring always!

    Suzanne

  7. #37
    There are many things to look at. It is not straight foward. The parent could be searching feverously for a cure and that could make the child feel he is not ok the way he is. Even though my son is very responsible, he is only 20 years old. At this point in his life he is in college, has a full schedule and probably needs the help of a parent to see whats going on in the cure area, and also in the care area. I guess what I'm trying to say is that good balance is very important. Sometimes especially with the ups and downs of the peroid right after injury, that is hard to maintain.
    bob

  8. #38
    Boy, do I know how you feel, see my post in this same catagory, it is titled HELP, SOUND FAMILIAR., I do everything, I am a single father with no one to help with my son, I can only dream what it would be like to share in the caregiving of a child. please read my post and know that I think you have it made, not that it makes it any better, but its true we have to be thankful for what we have, I too get at wits end but have to continue with life and be thankful.

    as we speak, I get up at 5:25am to get my son ready for school, bus picks him up at 6:30am, I try to sleep for another hour, then got to get going to work(need income), he gets home at about 2:15pm, I found some one to come in and let him into house and cath him at that time, I leave his pm meds and drink and snacks out for him and try to get home about 6:00 pm, he is home alone from 2:15-6:00pm and i call him often and worry alot, then at 6:00-6:30pm i get him in standing frame while I make dinner, then we do dinner and get him to bed we either have shower or bowell, usually in bed between 8-9pm, then I look at the house and paper work and try to do some, try to get to bed myself by 10-10:30pm, up again at 11:50pm for cath and meds and to turn him(he is c5,6)get back to bed about 12:15am, usually we can make it to 5:25 but he has been calling me in at 3:30-4:00am(cath) sometimes we cant make it to 5:25am.


    Then I get to start all over again, now dont get me wrong, I love all my kids and we have been water skiing, Disneyland, SixFlags, Knottsberry Farm, Universal Studios, and I by myself transferred him 18 times and got him on every ride at Six Flags, and it was just me, my son(he is now16)nd my 10 and 12 year old daughters,

    And to think I have it tough, but feel free to post a comment or email, it really does get better, and to think what it would be like to have two parents would be amazing, good luck.My best wishes for you.

  9. #39
    jk jr, it is difficult to imagine there are many of us parents or spouses who are maintaining as arduous a schedule as you are. i admire you for the selfless love and committment you bring to your children every day.

    something we all share and which echoes jesse's mom's lament to open this thread is the ever present anguish we feel for our loved one. the demands of caring for someone with sci regularly lead us to the edge of despair. sometimes it is despair for our own changed lives and the guilt that accompanies such thoughts. most often, for me, it is the sympathetic suffering i feel for my son and what he must endure.

    the oppressive characteristics of sci are well defined in your post. the routines of care, intimate or otherwise, weave their way into the fabric of our lives but they never feel as if they belong. my son is currently away from home with my wife. he is participating in an exercise based regimen at Sit Tall, Stand Tall. even at a distance of 750 miles, i am governed by the unjust cruelty of sci. each day, each waking hour, my thoughts return to my son's battle with the physical restraints, the shackling of paralysis. if our society punished felons similarly we would be considered barbarous and undeserving of any grace from god. and yet, here we are, each and every day, trying to bring dignity and some peace and comfort to our children or spouses who must endure an imprisonment they do not deserve.

    where is the "equipoise" wise young commented upon? i am currently relieved from the physical presence of my son's pain but the emotional eczema of suffering is all over me. i dare not scratch it less it become worse.

    i, too, have the feeling that i can't stand this anymore. but i also believe that my son's chance of recovery does not diminish with each passing day. conversely, it improves. jesse and my son are battling this oppressor with the very best option available: intensive exercise. other options are on the horizon and though the pace is glacially slow and the path is full of obstacles, i believe my most important role as a caregiver, is to keep him on that path.

    god knows i forget and dwell in self-pity at times. it is a natural consequence of the position we are in as caregivers. i try not to beat myself up over it. i do know that these forums and the input from others in all categories helps me to climb out of the solitary confinement of my despair. i would be lost without care/cure.

    john

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