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Explaining things to an eight year old

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  • #31
    it seems like it wasn't that long ago leaving the ''safety net'' that i felt the hospital provided. i was scared to go home, but knew that it was time. once i did get home, i felt great being back around my home and things. it will take time to settle, but i bet that you are looking forward to it..





    Life isn't like a bowl of cherries or peaches. It's more like a jar of jalapenos--What you do today might burn your ass tomorrow.

    If you ain't laughing, you ain't living, baby. Carlos Mencia

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    • #32
      Originally posted by orangejello
      Yes I got the "she's STILL in a wheelchair" treatment from him as well. He definately was equating being better with no wheelchair, like you suggest.
      Hel, I was 18 when I got hurt and all the upbeat talk my family was making about going to rehab had me believing that I'd walk out of there. While I was in acute care, the exact phrase everyone kept using was that I'd "get better in rehab". Since no one gave me any negative absolutes, it seemed reasonable to me to take that at face value. The truth of rehab was a major shock to my system.

      One thing we couldn't seem to get over was his belief that I just needed to try and I would be able to walk. He kept asking "can't you just try?" and that was hard for me to deal with.
      That is hard, but not uncommon either. You may get a bit of that from adults, too.

      We have several nurses and doctors in our family and that was also a target of his anger too. At one point he got really mad and told my dad he must not be a very good doctor if he couldn't fix me.
      Knowing how hard it is for my own father to deal with not being able to fix me (and he's not even a doctor), I can imagine how difficult it is for your dad.

      Basically, this whole SCI thing sux for everyone in countless ways. Sorry you were forced to join our elite, but growing company.

      C.

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      • #33
        One thing that was very difficult for us to learn was that the idea of rehab was not to get "healed," but to learn how to live with the new way things are.
        - Richard

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        • #34
          Originally posted by betheny
          Just wanted to tell you, it's ok to be scared.
          Thank you guys for all the reassurances. It does make it easier for me to know I am not the only person who has felt scared to go home. I very much feel like I am facing a day of reckoning.


          Originally posted by rfbdorf
          One thing that was very difficult for us to learn was that the idea of rehab was not to get "healed," but to learn how to live with the new way things are.
          Yes it has definately brought up all sorts of mixed emotions in me. I am looking forward to getting home and resuming my life and moving forward again. But I am also filled with absolute dread. In a way I think I have deluded myself. I have all these ideas in my head of how it is going to be once I go home--like I have convinced myself it's just a matter of picking up where I was a year ago. I don't know if it is denial or that going home is still not quite that real to me yet. Like Richard says, it's hard to come to terms with the fact this this is the way things are going to be once I go out that door.

          I don't know what will happen and that scares me. I have great plans for myself. But if I look at how the way my rehab has progressed (a seemingly endless cycle of one good week, followed by two weeks in bed), I am not feeling too optimistic. But I am trying to shake that and focus on the good aspects of going home, of which there are many.

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          • #35
            Originally posted by orangejello
            Thank you guys for all the reassurances. It does make it easier for me to know I am not the only person who has felt scared to go home. I very much feel like I am facing a day of reckoning.




            Yes it has definately brought up all sorts of mixed emotions in me. I am looking forward to getting home and resuming my life and moving forward again. But I am also filled with absolute dread. In a way I think I have deluded myself. I have all these ideas in my head of how it is going to be once I go home--like I have convinced myself it's just a matter of picking up where I was a year ago. I don't know if it is denial or that going home is still not quite that real to me yet. Like Richard says, it's hard to come to terms with the fact this this is the way things are going to be once I go out that door.

            I don't know what will happen and that scares me. I have great plans for myself. But if I look at how the way my rehab has progressed (a seemingly endless cycle of one good week, followed by two weeks in bed), I am not feeling too optimistic. But I am trying to shake that and focus on the good aspects of going home, of which there are many.
            Your mind and body will be better if you stay optimistic. I always like to remind myself "where there is will there is a way". What is wrong with having "great plans"???? They may not always go as you have envisioned them but we just have to adapt. The best way I can think of it is to celebrate the small victories..... You have come a long way. I have never even met you but I can tell by what you write you are a different person than when you first went to rehab. There will always be down days and cloudy days and the sun may not shine tomorrow or the next day but it has to shine again eventually.

            We are all afraid of the unknown....I know. I talk myself out of things quite regularly by thinking of all the things that can go wrong. It happens to be what I am really good at. If there was a degree in it, I would summa cum loudly....LOL Just hang tough!!!!
            T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

            My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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            • #36
              When I initally got hurt my 3 yr old would come everyday to the hosp with my parents to c me, but wouldn't come near me, kept asking if mama was going to die.

              My husband & son's father died a yr ago, so it was obv worrying him that the same would happen 2 me.

              I've got FAB parents who explained to him how I fell, what happened - my son is able to tell anyone how I fell, that I do exercises & I'm getting better.

              From the start I included my son in my recovery, from making him do the exercises (which he loves!!), play catching with the ball 4 balance.

              It's hard 4 kids to conceive what's happened, my sugg include them in yr recovery as much as possible so they can c the improvements!!
              ''Laugh often, long & loud. Laugh until you gasp for breath.....and if you have a friend who makes you laugh, spend lots & lots of time with them.''

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              • #37
                Hey OJ,

                I have really enjoyed reading this thread and your comments. It hasn't been that long ago that we were facing the learning curve of bringing my husband home. In the beginning it was a shock for our boys, but I wish you could see them now. The dreaded "code brown" luckily happens rarely here, but it is just another day in the life of SCI. The urine bag, bp, even suctioning is just no big deal. We have had to pull the van over to suction or quad cough, but the boys are used to it now, so it is just part of our life.

                I had to laugh the other day. My husband ordered an EasyStand. They delivered it and just put it in the garage; didn't even knock on the door. It was in 2 very large boxes. 2 boys, 2 large boxes, Christmas not that far away..when they came home from school they thought it was their Christmas present. Sadly, no I had to tell them, it is a Standing Frame for dad. I said "your dad is going to start standing." Our 12 year old just looked at me and said "yeah right mom, I can't see that happening at all, remember he is paralyzed." I explained the whole concept of the standing frame and they still aren't buying it. Guess they will just have to see it with their own eyes.

                I think with time your nephew will come around and begin to understand this all. He needs some time. Stay positive and give him time. Our kids needed time too, but now it is the norm for us. It is amazing what can become normal. I wish we didn't have to find it out.

                Trish

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                • #38
                  Denial is probably a HUGE part of your nephew's confusion. It has to incomprehensible that you cannot move or feel. He moves freely without thinking about it, it just is the way things work. Like morning following night, your leg moves and you walk, your fingers curl and you pick up the glass, so how can it be that you cannot do this? It may not be that he thinks YOU aren't trying hard enough (i.e. lazy), but that you just need to try a little harder and it will all work again. It has to, that's how it is to him.
                  Will you visit home before you move back home? If possible, you really need to do that. See what works, what doesn't work and how things still need changing. Get used to the fact that some things will be more difficult than expected and other things easier. But going home is great, if a little scary at first.
                  BeeBee

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                  • #39
                    OJ You did get an extra bedroom in this apartment...didnt you??? I think with all you neices and nephews, you are going to have lots of company!!!
                    T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                    My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

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                    • #40
                      I always want to reply to everybody who takes the time to write a response to the things I say on here. Unfortunately, as I write up my posts, I always forget somebody. But I appreciate all the responses equally--the ones I have responded to and the ones I haven't. This thread has been SO helpful in trying to work through the nephew issue--and now the "leaving rehab" one.

                      carolynmilan my condolences on the loss of your husband. It is wonderful to hear your son was so actively involved in your recovery. I am hoping that by including him in helping set up my new apartment he will feel that he is being helpful and seeing that things are getting back to normal. Hopefully that can quell some of his anxiety. I am also working on what kinds of activities we can look at doing together, just me and him. He seems open to being my "hands" for me when he can, so that is something positive to focus on.

                      taj2002 that is a great story about your kids and the box lol. It sounds like your family is doing well and that is so good to hear. It amazes me how kids can often become accepting and used to things quicker than adults. I wish I knew their secret to doing that.

                      beebee yes I will have the chance to do some "transitioning" with my new place before I move into it. How long and exactly what that will entail is still being decided. My family and friends have really been wonderful in doing all they can to make my move easier and to ensure I will have everything I need. It's actually become a project that has almost taken on a life of it's own lol. In some ways I feel like I have lost control because everyday somebody else has a new plan or idea and sometimes making my opinions and ideas heard is a bit difficult. I hear you about it being a "trial and error" type of situation. And although is where a lot of my anxiety about going home is coming from, I know things will work themselves out-hopefully.

                      Daisy I do have a spare bedroom so hopefully I will be able to "entertain" all my rugrats regularly. At my last place, "the spare bedroom" was code word for "the room into which everything was blindly thrown and the door closed so nobody could see it, including me." You know, a sort of housekeeping/cleaning method. I am going to try to put the spare room in this place to better use!

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                      • #41
                        Hey, we have a room like that, too!
                        It used to be our library, on the ground floor. Just before my wife came home, my son & I carried everything upstairs and dumped it onto the floor of our daughter's room (away at college), to make space for the hospital bed. You can't get in that room for the piles & piles of books, only past the door a foot or 2. Some day...
                        - Richard

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                        • #42
                          It takes a long time for the people who care about us to come to terms with our injury and they all deal with it in different ways.
                          In my case the children in my life have dealt with it better than everyone else. My best friends children who are three and six years old find ways to include me in so many of the things they do, they will help me when they see me struggling but don't fuss over me or try to do everything for me.
                          However they do pick up on our emotions and become very protective of me when I'm anxious even to the point of being rude to other people when they ask thoughtless questions or assume I can or can't do something.

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                          • #43
                            Originally posted by rfbdorf
                            I'm sure it's the norm. Every step was scary for my wife.
                            Leaving the hospital for rehab, leaving rehab, going back to rehab again, leaving rehab. "Can't I stay here longer? I'm not ready yet."
                            But yes, she was real happy to be home.
                            - Richard
                            I was the same way .... my injury was in February, and the initial discharge date was April 4! I was terrified. It actually kept getting extended, 2 weeks at a time, until mid May, but it is OK to be afraid! Once I was actually home it was better, but I still missed having the nurses available 24/7 for questions or worries, and knowing that medical help was right there at all times. But just being home makes it all worthwhile.

                            The whole pet store visit sounds like it went a long way to helping you nephew adjust. He may very well get really interested in some of the equipment you use .... voice recognition software, all the "gadgets", etc. Keep it up, it will get better, although I find it is often a 1 step forward 2 steps back sort of thing. I am 18 months post, and sometimes it seems like nothing is improving, and then I do something and realize just how much easier it is than 6 months ago, or whenever.
                            Last edited by sjean423; 10-30-2006, 08:39 PM.
                            T7-8 since Feb 2005

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                            • #44
                              Originally posted by 2jazzyjeff
                              OJ, i have a 7 year old nephew, but my scenario is a bit different. i had my accident when he was 3 so he only knows me being in the chair. it didn't take him long to understand, well sorta, but he is very intelligent for his age. he is at the point of asking many, many questions and trying to figure out how to get me involved with his activities. he understands that i can't do things without my chair, it's just funny how he tries to find ways for me to. a few months ago he went to a local waterpark and had a blast. a few days later, he went into my sisters and bro-in-laws bedroom all serious and asking that when i get better, can he take me to the waterpark to ride the slides... my sis called me and we were just in tears bc of the many comments and ideas that goes on in his head.

                              his bedroom is upstairs and i obviously can't get there. he has designed a pully system over the railing and up the stairs whereas i am sliding on a mat on my back.. we got a huge laugh from that one, but not in front of him. he was just way too serious. last weekend he drew a small book documenting my accident. it had me riding my motorcycle, having a wreck, in the hospital, and then in my chair.. it was awesome and i think my artistic talents may have carried over to him.. i hope. we went to Six Flags yesterday and he rode around in my lap a lot. for the most part, i think he is doing great with it. my sister works with him a lot when he sees me making sure that he understands. i think that his parents have their duties to work with your nephew as he is older than mine when this happened, atleast this nephew. i have another nephew that was 6 at the time. i lived with my brother and his family for around 7 months after my accident. he was/is a hoot. he is in accelarated everything and has so much energy.. he took it great. being there every night really helped so i can say that being close to him helped deal with the realities of a wheelchair. every night he would come blazing thru the doors to ask gawd knows what. i just answered and watched his mind process the info..

                              all i can say is give good info. to your sister and just be yourself. he will ask a lot of questions and you will cry over what he asks. there will be sad and very happy times to come. i know that i probly haven't helped much, but just wanted to share my experience. good luck with him..
                              great post man. that really put a smile on my face

                              i was invited to a waterpark, and i had to explain to her that i am incapable for right now.

                              sort of hurts to have to deny going somewhere you'd normally not think twice about. dammit, i really wanted to see her in a bikini too. whatta bummer. LOL

                              .....in time.....

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                              • #45
                                Wow. Interesting revival of an old thread.
                                Daniel

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