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Thread: a night out from rehab with my 14 yo son Michael

  1. #11
    Senior Member okwjoe's Avatar
    Join Date
    Sep 2004
    wesley hills, new york
    yes the doctor is a SCI board certified, yes he is rehabbing a CAFE institution, but not a model based one. We discussed his ASIA score with her and she still insist he will always be a ASIA. A..

  2. #12
    Joe, please check your private topics. (Click the 'my space' tab on top, then click on 'private topics'). TY!

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

  3. #13
    joe - a couple of thoughts:

    1. Marmalady and others have said it well - the more your son goes out and re-engages into the public the easier it will be.

    2. Marie made a great suggestion. Information, thoughts, feelings, emotions shared between two injured people can be and is definitively different than the same shared from able-bodied to sci. It would be very helpful imo for him to talk with other paras, quads.

    3. I know its not easy but try not to dwell on his recovery. Work with what he's got, inspire him to do more and learn/support what you can about paralysis and recovery. Time, patience and dedication to the subject - become a student. Therefore you can arrive at your own conclusions and not rely on misinformation, hyperbole and conjecture from the doctors, nurses, therapists. Knowledge is power.

    4. Your situation will get easier with time. Keep a diary. I'll bet that a year from now things will be quite different - to the positive.

    5. Take care of yourself. Your mental, emotional and physical strength are just as important or moreso than your son's. You'll find that as you go he goes.

    6. Good luck. Peace. God Bless.

  4. #14
    Junior Member SharTango's Avatar
    Join Date
    Oct 2004
    Hudson, MA USA
    Dear Joe
    I know how you feel. My 16 y/o son woke up with a headache 2 years ago and ended up paralyzed by the end of the day. Since then he has made gains but it's a long slow process. He went from having no feeling or movement from the neck down, to now he has 95% sensation and can move his right arm, left as well but not as good as the right and he walks a little but with a walker. However - his is still on a ventilator because his diaphragm has not recovered (yet) we hope. I force him to do things outside of the home - it's always a good thing when we return he is happier. He was in rehab for almost a year and now has at home rehab because he has low blood pressure problems. We are trying to work that out. Look- hang in there - recovery is slow and you absolutely have to cling to whatever is good. Feel free to talk more with me - I have been through a lot with my son.

  5. #15
    Senior Member michaelm's Avatar
    Join Date
    Aug 2001
    montville nj usa
    I was injured c4 25yrs ago at 16.If your son (or you) ever need someone to make a visit, let me know. I'm just minutes away from kessler rehab.

  6. #16
    Joe, here's another article by Wise on classifications and spinal levels - link

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

  7. #17

    I know you are hurting and so is your son because both of you are new at SCI and probably confused. It is normal to have mixed confused emotions because everyone has them, but it sounds to me like you have more down emotions than up.

    If I may offer advice...try not to focus so intently on recovery but more on living and adapting to a new life. In my opinion, if you are always searching for a cure or hoping for a huge recovery you miss all the good things that you could be miss living. I am not suggesting giving up on the idea of recovery because some people continue to gain for years. Just put it in God's hands for now.

    Even if your son doesn't gain much more back, don't think of it as a disappointment. Your son is going to make you so proud because he will learn new ways of doing things. Try not to make him think that he will be a disappointment to you if he doesn't walk again. I know you are very focused on recovery and it might make him feel worse with the thought of hurting your hopes. Be as optimistic as you can around each other and discuss plans and oppertunities because there are many out there.

    Forgive me if I offended you in any way. I am writing based on what I have read, and I might be completely wrong. If that's the case than disregard this. I just want to encourage you and tell you that God has a great plan for you and your son's future. He will take you places you thought you would never go.
    God Bless.

    Unbroken by the grace of God

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