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  1. #1
    Senior Member Jesse's Mom's Avatar
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    the feeling that I cant stand this anymore

    My son was injured 11 months ago and at first, even though I could scream at this situation, it was "easier" to deal with since we were early on into this injury. Even though 11 months is still early, I have been told, each day that goes by makes this harder. The chances of him recovering more movement diminishes with each day and I find myself wandering around, wasting an entire day, with him and his recovery on my mind. There are days when I feel I just cant stand this anymore but know that I have to; what is the alternative?? Does everyone feel this way early on and how long does it take to get it through your head that this might be your life forever? Such a thought I just cant stand right now.

  2. #2
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    I met my husband when he was five years post. We have been married 27 yrs. The weird thing that happened to me was I went through a "this is the rest of your life" moment (more like a lot of moments) about a year and a half ago. Regained my equalibrium but it was kinda weird after all that time. I don't have any answers I just wanted to share I guess. My family and his don't really know what it is like and we don't dwell on it we just keep moving. It's a different kind of life that's for sure--not worse not better just good I guess. Miss a lot of stuff but would have missed a lot the other way too. I am real sorry anyone has to go through this kind of grief.

  3. #3

    no advice, but....

    all I can do is send a cyberhug....

    {{{{hug}}}

    Teena

  4. #4
    Senior Member kate's Avatar
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    I hear you, Mom. I do think all of us know the feelings you describe. For myself, three things keep me grounded:

    First, as long as my husband can keep himself focused, I can continue to do my part. If he gets depressed or frustrated, I tend to slide quickly into panic.

    Second, I'm convinced that there will be a cure, and I'm doing everything I personally can to make that happen as soon as possible. This means, for me, involvement in politics, promoting public awareness, and fundraising.

    Third, we both have spent years and years practicing things like "One day at a time" . . . and now that mindset is more useful than ever.

    Your life forever? No way. You've already survived the toughest part . . .

  5. #5
    Hi, Jesse's Mom -

    I won't give you the 'you're still early into this' - I promise! But I will share a story with you. When my son, Matt, was injured, I flew to SC to be with him (we lived in NJ at the time); I stayed at a motel the entire month he was in acute care, and then flew up with him via a Medivac plane to Kessler Rehab in NJ. He was at Kessler six months, and I was there every day during the day, and my husband spent evenings with Matt.

    When Matt came home, the social workers had told us we were lucky - Medicaid would pay for 35 hours a week for aides, through an agency. We were assigned a home health nurse, and she arranged for the aides. After going through 6 of them in about 6 weeks for incompetency, we finally threw our hands up and said we'd do it ourselves.

    My husband (Matt's stepdad) and I took physical care of Matt for the next two years, and then we were finally able to hire a private aide who met our qualifications.

    I can remember standing at a window in my house about a year and a half after he came home, crying, and telling my husband that Matt's life was over; my live was over; and his life was over. That was it; what we had was all there was ever going to be.

    Fast forward to almost 5 years now (Nov. 15, 1998), and Matt has a life; not the life he envisioned, and certainly not the life he could have if it weren't for his brain injury also which slows him down; my husband is able to pursue more of his writing, and the things he enjoys doing; I am back investigating a new career in catering (what I had just 'broken' into at the time of Matt's accident).

    So, physically, yes, it does get better with time.

    Emotionally - there are still times when my eyes flood over and I can't stop the overwhelming sadness and grief; when I get angry and rale at the universe for allowing this to happen to my son; when I get into a 'why bother' mood. Not as often as I used to; and I can sleep most nights now, without nightmares.

    Things I have done to cope? Made - forced! - myself to do something, whatever, in my life that gave me peace. For me, it was working in my garden and my bonsai. Made myself give 'me' time - for a Calgon bath, a book, a nap, a talk on the phone with a friend.

    And most importantly, realized that 'it is what it is'; that life has given all of us this task to shoulder. That we cAN make choices about how we're going to muddle through it. I know what you're feeling - somewhat akin to drowning, and I've been there, too. The other important thing I've forced myself to do is just to take one day at a time; if I try to project into the future, I go into a tailspin; if I look back into the past, I get angry. So, living for today, and trying to bring a little flower of life into that day, is my goal.

    And, oh, please, please, don't ever lose hope; Matt gets little bits of recovery even to this day, almost 5 years post; no, he's not up walking; no, he has no b/b control; but he has made progress, in sensation, strength, and being able to make some of his own decisions. Feel the hope, and the excitement of this website, led by a totally dedicated human being, Wise Young, who has made it his life's work to find a cure. Read the hopes of those brave members who are trying yet experimental therapies in the hopes of providing yet another piece to this puzzle.

    And - know that you have a family here, who does understand!

    Peace,

    Jackie

    _____________
    Tough times don't last - tough people do.

  6. #6
    I'm feeling for you Jesse's mom! I just wanted to share. I guess we all have to keep going no matter what. I read posts in the 'cure' forum and they really give me hope. There are an awful lot of people making gains in recovery after years of thinking 'this is the rest of my life'. For us, as well as our loved ones, things will never be 'the same'. Try to keep in mind that that doesn't mean things may not be better!
    I'm only a little over a year into the post-sci thing myself. It's OK to grieve and be angry. It's still early for you, and this is happening to your child!
    For me; I look at the forums here, I go to the sites that others have linked in the posts, I search for ANYTHING that is going on that will give me hope, and the ability to not give up on possibility!
    There are days my bf is so tired and worn out from dealing with the effort it takes him to do many things that AB's take for granted. I realize that those days are pretty bleak for him, and he just doesn't have the strength to believe in ANYTHING. That's when all my reading, searching, and hoping really pay off. I know it's not much consolation to watch someone you love suffer. It is a great relief for me, however, to know that the someone I love is not suffering alone, struggling alone, or searching for the will to carry on alone. Neither are YOU. Everyone here can understand where you are right now.
    Hang in there lady!
    HUGS,
    SoulMate

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

  7. #7
    Great advice provided. I relate better to Kate's efforts/ideas about "advocating, fundraising, etc" because ultimately the cure/recvovery will happen with enough education and money applied towards it. Therefore sci will be a part of the past and not the present. Of this I'm certain.

    On the emotional front The only thing I can think of to add is "that nothing is permanent except change".

    This can be used in a broad context in every aspect of life and generally helps me when the spector of "this is it or is this it?" creeps in.

    Good luck Jesse's mom. Hang in there.

  8. #8
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    jesse's mom, i know it is so hard at times. i flew to my brothers side and remained thru the 6 months of hospitalization. i was told to put him in a nursing home, we are the only family we have left, but i refused and took him to my home. there were times of strain at first, but when i was just thinking about it, it was always due to other's opinions-i was never in dubt that this is the right thing to do. 'friends' and in-laws worried about the change in our life and that stress did make me upset, since of course this involved my husband also. i really feel that if i was to do this, it should be with all my heart , and the focus is on better health and future possibilities, not begrudgement and bitterness. the first year was demanding in terms of time and stress getting medical issues solved. BUT IT DOES GET BETTER!!!!i am glad i sucked it up in the worst times, because now we are a united family, without regrets. jim wakes up every morning with an i love you and a thank you, and i thank him for the support he gives me. it seems in the first year all attention and time was given over to stabilizing his condition, c 5-6, TBI and type 1 diabetes. now, 2 and a half years post, it is just our routine, we all look out for each other. yes, there may be down days, but never regrets. the care is done in less than half the time, i know where to turn for medical help that i can trust and we can discuss and decide what is good for the family together. if you need to take a break, do it, you can't be good for jesse if you aren't feeling good within yourself. as jim's sole caregiver, i feel that it is very important that i take care of my mental health, since i don't want to drag him down. so plan in some time for yourself or take a break, just remember you need to be okay with the situation or neither of you will be living a good life.on those occassional bad days, take nap, a long bath, go shopping, whatever tickles you and tell jesse you both need that time! i guess i don't know what else to say, that first year was really hard, but now has evolved into the focus being our lives, not jim's 'condition'. best of luck to you. i'm glad you have found the good folks at this site, i wish i had earlier!

  9. #9
    at first my mom couldnt accept the possibility that i'll never walk. its been about two years now and she still hasnt given up hope, but i can say she doesnt cry about in front of me anymore and actually gets sleep at night. she definately took my SCI harder than I did.

    this year is going to be the hardest for you and your son, but it will get better. i think of how i was a year ago and i couldnt do anything on my own. its still hard sometimes, but the more i do for myself, the less my mom has to worry. i haven't gotten any movement back, but i have gotten a lot stronger. one positive thing that has come out of this situation is that my relationship with my mom has never been better.

    best of luck to you and your son...hang in there, it'll be ok!

    Even if your body cannot move, you can still think and meditate ~Dalai Lama~

  10. #10
    Senior Member poonsuzanne's Avatar
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    Hi Jesse's mom,

    Are you feeling better and stronger now? I would like to share a few points in addition to all genuine advice you have received previously.

    Since my son's injury, I always capture the belief in "destiny" that it cannot be altered and we can only accept it peacefully with no regrets, but we must vow not to be defeated by it whenever we are in time of adversity.

    I remember the first person who was capable of easing part of my unforgettable pain was my daughter. On the third day from my son's injury (Richard 16 yrs, T12, 22.3.02, fall from ski jump) I asked my daughter, apparently she looked quite calm, "Are you OK?" "As long as he can still smile at me, talk to me, communicate with me with perfect sense... I'm totally fine!" replied my intelligent Rachel (15 yrs). The second person who could also ease my pain was my lovable youngest son, Roderick (13 yrs), saying, "Mom, you don't have to blame yourself so hard, even when you have always reminded us not to do this and that, we won't listen, we're always doing things behind your back!"

    However, no matter how tirelessly people around me were trying to comfort and encourage me day after day, I knew I was the only one who could truly cope with this unmanageable task, and to drag myself out from this horrifying nightmare. How did I comfort and encourage myself? Let's look at the tragedy from this angle. There are numerous accidents happening every minute in every corner of the world, you may be unlucky enough to lose you loved ones instantly on the spot, no matter who you are and where you're from, for example 9.11. As we know SCI injuries can be fatal since they mostly result from violent acts, e.g. violet impact from car accidents, violent falls from various activities, gun shots etc... The story may end like preparing for and attending a funeral and, thereafter, miserable memories are the only things left for the rest of our lives. Now that your beloved child is still around, waiting for you to tuck him in every night and offering you the sweetest kisses and most precious hugs ever. Even though what happened is cruel enough, the truth is I still possess and am in charge of the time to be with him, to take care of him and most of all to share life with him, so I am more than contented.

    I can understand that the whole of you is filled with tears, the same as everybody else is, but please learn to subside your emotions and feelings by diversifying your attention onto the hope of recovery and fight for it with all your might. That's the way which keeps me going and that's why I signed up for this forum as well.

    Lastly, I feel fortunate in and grateful to my supportive husband and, the key person above all is, my son Richard who is fueled with invincible courage, and the fact that recently he has accelerated his studies with full speed is the best gift for me since his injury.

    Warm regards
    Suzanne

    [This message was edited by Suzanne Poon on 11-15-03 at 10:50 AM.]

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