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Thread: Families and friends of someone with SCI- I need advice

  1. #1

    Question Families and friends of someone with SCI- I need advice

    I am 15 years post SCI C-5 incomplete. I was injured at six years of age. My best friend and I have been friends since we were two. She's toughed out every surgery (34 last time we counted) and pnemonias (two of which almost killed me) right by my side. I couldn't live without her and I have had doctors that have said I am alive because of her. Once when we 12, I had pnemonia in both lungs and was dying according to my doctors. She stormed into the ICU and told me I wasn't allowed to die that day. "You can die tomorrow but today is the best day of my life and your dying would turn it into the worst day ever", she yelled. Pissing your best friend off at 12 is scarier than the pain of living.

    She use to mess up her craft projects on purpose so mine wouldn't look so bad (i have no finger control). She'd also drag me around her parents house by the feet. We'd stick her brother's batting helmet on my head and take on the stairs! She said if she dragged me by the shoulders my feet might get hurt and I couldn't feel it and then would not know to fix it. We both got stuck together on a Zipper at a amusement park upside down for 45 minutes! Neither one of us has ever riden that ride again (I got dysreflexic because my blood went to my head). Her brother once talked the Shine circus to allow us to have seats on the ring. She allowed me to be as normal a child as possible for a child with an SCI.

    I want to show her how much she means to me. I am planning to write a children's book for her son explaining his mom and Aunt Sam's friendship and why his mom is so special.I will be using our childhood pictures to illistrate.

    I need to know the point of view of the friend or family member of an SCI patient. What you felt after finding out about it? Things you were scared by etc. This I could use added to what she and I have talked about to give her point of view in the book more depth. Thank you

  2. #2
    Senior Member
    Join Date
    Aug 2004
    So. California
    My son was injured 16 months ago in another country. When we first got the call, I was in complete denial. Once reality set in, so did the sadness! I don't think the sadness ever really goes away. I felt that his life had been ripped right out from underneath him! We are dealing with this SCI crap and have found a new "norm" in our lives. He is doing pretty good - going to college, moving forward. This does not mean that we are accepting this. We never will! We will never give up hope, nor the fight!

    Good luck with your book!

  3. #3
    Senior Member BeeBee's Avatar
    Join Date
    Dec 2004
    Washington, D.C.

    My son, now 18, is 16 months post. Car accident. Some days I'll look at the chair in our house and still not believe this is real. It just can't be. He'll come bounding through the door and ask what the hell that thing's doing here, or I'll wake up and tell you what a horrible dream I had.

  4. #4
    I don't have even a fraction of all the answers, but I know that my daughter, 15, became a happier person when she came to Kennedy Krieger and started doing e-stim on a bike.

  5. #5
    I am the Mom.
    Ours is only 3yrs 5 mos. post.
    What I'm feeling is overwhelming sadness, but
    only show it to God and myself. Don't want
    to bring anyone else down.
    Your friend is amazing!
    Cathy J

  6. #6
    I agree, your friend is incredible. Her compassion at such a young age is remarkable because children are, by necessity, self-centered. I marvel at the bond between you two.

    "Hope is like a road in the country; there was never a road, but when many people walk on it, the road comes into existence." Lin Yutang

  7. #7
    My husband is C6, 2 years post, our sons were three and 5 months when a drunk driver rear ended their dad. We are thankful that it didn't happen to our sons, as a mother I just could not imagine. As a wife, I have a really hard time, I will never accept this, but we are learning to live with this as a family. The boys both know that we are different. The bond my husband shares with our sons are both different, it's much harder for the older one since he still remember dad as being "normal" for our younger one dad is just dad. When my husband came home from rehab our youngest was 10 months old, he started to copy his father in certain things, like clapping his hands, since dad clapped his hands with his fingers bent so did he- but when he clapped his hands for me he did it with open hands. Kids are so smart, you really made me cry reading your post. Hugs to you and your friend!

  8. #8
    Senior Member LauraD's Avatar
    Join Date
    Jan 2002
    Southwest WI USA
    What a wonderful friend you have!!! You are so lucky to have a friend that has stood by you for so long. So many of the girls my daughter used to be friends with have slowly moved on and have not stayed by her.

    My daughter Heather, age 13, T-12, was injured 5 years ago. My initial thoughts were total denial. That if I sat and rubbed her feet and legs enough, the feeling would come back. I remember Heather's first friend that came to visit her a couple days after the accident. That was awful for me to see her walk in there, I thought that it wasn't fair that she could walk right in there and my daughter couldn't do that anymore. God, I haven't thought about this for a long time!!! I guess I thought for the longest time that it would get better, that she would heal and walk again. But as time went on we learned to live for today, and make the best of what she has. Maybe in the future we will all get the miracle we are hoping for but until that day, live with what you have.

    I still get a lump in my throat every time a child tells me their birthday is coming up and they are going to be 8 years old as Heather was injured a month after she turned 8. I see the gleam in their eyes and remember what she could do on her 8th birthday and how much she loved to run and wish she could have her 8th birthday again.
    Last edited by LauraD; 01-21-2006 at 01:51 AM.

  9. #9
    Senior Member teesieme's Avatar
    Join Date
    Nov 2002
    back home in mn.
    Okay, I am going to have to make a cup of coffee for this share the moments throughout~
    the first is the way my son's small class of 2002 (26 I believe it was) wanted so much to graduate Harry with them...ah, I still had so much to learn myself about the extent of his injury~ it had only been five days since his injury, hell he hadn't even sat up yet- we learned there was no way he would be able to make that forty minute trip home or even to the decorated cafeteria so they gathered in his hospital room, gown & cap, graduating my son with them. It was a bittersweet, so very beautiful, so very heartbreaking as the tears mixed into the joy of still being able to embrace one another. These kids had lost a friend two years in a row prior graduations, one being my son's best friend.
    a second is two very close friends, like family who came to stay with my son in the hospital so that I could feel comfortable enough to have a weekend at home a few times throughout, they loved us so very much and I trusted them both by his side to be able to do so... one (my brother in law) has since passed away through meth related suicide, the other has become lost in it too. How my son loves(d) them both but they just don't/didn't see that because of the drug and their choices since~
    a third is the bullheadedness of a young man who will have his wheels and the freedom of that other than through a wheelchair. Just a few days home from rehab. he is driving w/out his license reissued yet. Okay...small town privleges...he was driving at fourteen. LOL. But the thing I have to chuckle about is when he re-took his driving test, rolled up to me and said, "ya know, that's something when you do better/score perfect the second time around using hand controls than having failed the first time around otherwise!"
    In this comes a fourth...cruising as much, if not more with friends while suffering the misquito infestation of that summer windows down to cool off or visit (getting in and out of the car wasn't very easy yet, with or without help) and as well those buddies getting "initiated" when first learning to empty the leg bag and getting pee'd on back then~
    A favorite memory of mine in learning and accepting how life goes on no matter what~ is the first duck season and no damned ducks flying overhead due to a warm, beautiful fall as well as migrating patterns changing!!! But mom here thinks hmmm, I have an idea, stating we don't need anybody but the two of us to do this!!! Kid gets set in duck blind and I decide to drive across the fields up a bit further, up river and pull the canoe through that short patch of woods, get on the river and paddle down, hoping to scare up what might be there we aren't seeing...heh. Well after one helluva fight to get the canoe through the woods, and I mean more like woods and thick brush, I get the now thousand lb. canoe on the river and try to slowly, carefully, as quietly as I can paddle down, down, finally come around the corner...only to see~~~ my son basking in the warm sunshine taking a snooze with his camo shirt off! His excuse, no ducks! My reply, yes that's because they saw you miles away Mr. No tan man. LMAO!!! See if I do that again, hee hee.
    Another was a first race since the accident, something different, something new... Mud bogging. A girl-friend entered using the same truck as the kids. They were one up one after the other. It was a most wonderful day not knowing what the hell we were doing. He took a second and she took third place. Awesome~
    I could go on as the love and triumphs continue even through all the pain and loss, wondering, waiting, worrying...
    Tonight, my usually quiet and husband of few words said he didn't know how we did it...that we (my son and I) had come a lot further than he could've or anyone else he knew may have. Wow. Thanks hub, but it was because of us all, including him who I almost divorced several times over the past couple years, as well as those who were there and aren't now, those who've stayed throughout and those we've yet to know, it's the good times/memories as well as the bad that make us who we are today and who we may be tomorrow~ and let us not forget the what if's and why not's???

    It's not easy, life, and yes, some have it tougher than others but we each have our own hurts and our fears, bitterness biggest was/is to lose my child to death. He is still here and I intend to enjoy harassing him as his mother as well as take pride in the fact he is my son.

    You have a most wonderful friend hisamsmith, your book in honor of well, that is a most beautiful thankyou to/of her from you. Take care~ T.
    Last edited by teesieme; 01-21-2006 at 03:55 AM.
    "I want to make a difference! However small it may be~ as long as it's a positive one, then this is what my life will have been about and I will go knowing I did my best.~ T.

  10. #10
    Senior Member Jesse's Mom's Avatar
    Join Date
    Oct 2003
    Winthrop, MN, USA
    I cant believe the first thing that I thought. And then God, is he dead because they wouldnt tell my other son, Bert, Jesses condition. When I thought he was dead, for a few second because of a misunderstanding, I screamed and fell onto the bed. I knew for a short time what it was like to lose a child. As the weeks and months went by I was certain he was going to walk again and once in a while I would tell myself 'so what, whats the worse thing...he cant what, at least he is alive.' But I was certain he was going to walk. I would see people in therapy paralyzed and I would feel so bad for them because I knew Jess wasnt always going to be paralyzed. Things would get better for him. When he is in front of me if we go somewhere together, I just look at him, pushing that chair to get around. It still feels brand new three years later. Not that it makes any difference but Jess use to weigh 260 and stand 6'6. I had to bend my neck skyward to see in his face. It is just hard seeing him SITTING.

    Well, there's my story. Good luck with your book.

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