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Thread: Just wanted to get something off my chest

  1. #1
    Join Date
    May 2006
    Posts
    1

    Unhappy Just wanted to get something off my chest

    I had a spinal fusson about two and a half years ago, my sophomore summer in high school and everytime I went to for my check up in the Oakland Children's Hospital with Dr. Policy, I saw these kids in wheelchairs or in cruches. At the time, I felt bad and said to my mom sitting next to me that my back didn't hurt as much as it did when I walked in about twenty minutes ago.

    That was two and a half years ago and I started crying today. Was it because I finally reliezed what that feeling was when I relieze, sitting there, that I could walk out and they couldn't? Was it that it took this long to relieze how lucky I was? Truthfully, I don't know, probably both. I think it was guilt. I felt guilty that I could walk and they couldn't. I was 16 and they were 10 and they were already in wheelchairs because their Scolisis was so bad and mine wasn't. Was it guilt that is crushing my chest? Yes, I think it was. Maybe it was because I felt the need to help them, do something! Anything! *sighs* I don't know. Maybe it was because seeing a 10 year old child paralized from the neck down broke my heart...

    *sighs* Thanks, I just needed to get that off my chest.

  2. #2
    Join Date
    Jun 2006
    Posts
    4

    Talking

    awwwwww dear thank yooo!! im 16 and i nearly got paralysed because my scoliosis was so bad during the operation the nerve endings in ma feet went and if my professor had carried on with the surgery i cud av been paralysed and thanks to you saying that it lifted my spirits up alot!! thank you

  3. #3
    Join Date
    Apr 2006
    Location
    Southwest Florida
    Posts
    111

    Right there with you

    Hey

    I know how you feel about the guilt and not feeling pain after 20 minutes of walking in to the hospital. First I fellt(?) punished when I was diagnosed with scoliosis but now I am actually thankfull that I have it, it has made me understand that EVERYONE has somthing wrong with them,with there leg, hand,shoulder and for me it happens to be my spine. Im also Thankful for not haveing something paralized.
    I fractured a nerve in my arm in April and I still have a hard time straightining it out
    And for the things I have done with my scoliosis/brace are great.
    thanx for telling your story it has helped me get through rough days!!
    Mk Veronika
    14 yr.o. girl 9th grade
    40T
    54L
    +rotation
    Boston Brace since December 2005
    Location in Florida

    I play flute.
    I LOVE ROCK!!!!!

  4. #4
    Join Date
    Jul 2006
    Posts
    11
    That is very mature of you to see that instead of dwelling on your own problems. Its a gift that most average people dont have, noticing the heartache other go through. Theres a point in time where sometimes we realize that scoliosis is not the end of the world, and that we are not the worst person in shape in the room. I see people at my doctor's office with drills literally going strait into their knees, the kind they leave in for a long time to brace it. Children with spinabifida, cerebral palsy, severe scoliosis. It can truly make someone feel awful, yet at least you see it and become aware of it.

  5. #5
    Join Date
    Jan 2006
    Posts
    78
    I agree with Caroline that you are very mature for your age and are empathetic towards others. Being a parent of a child with cerebral palsy I often see a lot of children and even sometimes you will get an adult who will stare. Which still upsets me because it tells me they don't care about my son's feelings or my own. It is nice to see that there is someone like you and others who take a moment and think about what someone else may be having to go through but it is not to say that what you went through was nothing. Having fusion surgery is no small thing and you were strong to get through it. We each have certain obstacles we have to overcome in life.

  6. #6
    Join Date
    Jan 2004
    Location
    Seymour, TN
    Posts
    57
    If it helps. I felt the same feelings everytime I went to the hospital (where I had to do all my visits about my scoliosis). My doctor worked with some extreme patients, and having to see kids with shattered legs and leukemia, while I always sat there looking perfectly normal cracking jokes with the nurses and doctors bc I was familiar with most of them. I also have always had this sarcastic humor (actually i got it, when I was forced into the lonely, depressing habitats). Dont feel so ashamed about having emotions. It just means that your a nice guy with a heart in the right place. I'm now 18 and in college, and I figured out not long ago my way of helping over come those feelings. I help out and volunteer at the hospital now. And everyone loves my sarcastic, optamistic humor. I cant cure them yet, but at least I can take there mind off whatever there going through, and make them laugh. I also give them a friend, which most of them dont have. Well anyway. You dont have to be a hero, but they have enough ppl pointing and staring at them, why dont you just shoot them a smile. It could make there day. Love you, Bless you, later. -Ali K

    18 yrs old
    surgery~ Aug 2001, and three major curves.
    spinal fusion and metal rods
    but thats the past
    now~ Univ of Tenn freshman
    future~ something prime time!
    akitzrow@utk.edu (anyone email me with any questions you have!)

  7. #7
    Join Date
    Jan 2007
    Posts
    65

    Grateful Heart

    Wow, this is an old thread, but it is worth bringing forward again, and Ill tell you why.

    My son Spencer had spinal fusion surgery this week, and sometimes, when I was able to stop and take a breath or two, I would begin to feel sorry for him and for myself and for all the rough times we have gone through over the years and for how unfair it has all been. But everyday this week I have walked through the pediatric ICU to my sons bed and I have passed many children and their families who were in serious and critical condition, and then I would realize that we are not the only ones who life has dealt a bad hand to and I wouldnt feel so alone anymore. And just before I turned the corner to my sons room, I would pass a small room with two very tiny children in it who were in extremely critical condition with ventilators and life support machines all around them. But the thing is, over the course of the whole week, I never saw any family with them only nurses. And every time I saw those two little children, my self pity would turn into guilt that these two tiny, little children where alone and no matter how bad anything else may be for us, Spencer and I are least together. And then I would feel grateful for having that simple little thing. Grateful for having an understanding boss who let me take as much time as I needed to be with my little boy. Grateful for having family that could watch and wait with me while Spencer spent a whole day in surgery. Then I would feel a little happier, and like a weight had been lifted from my chest, and I knew that I could make it through another night in an uncomfortable hospital recliner with Spencer by my side.

    And today after reading this thread I have realized why this is. And it is this simple but profound truth, which is that a thankful heart is a happy heart.

    And you know what? A happy heart wants to help others.


    Tonight when I walk by that room, I think I will ask the nurse if I can hold the hands of those little children so that for a moment, they wont be alone.
    Last edited by Spencer's Dad; 01-12-2007 at 09:03 PM.
    Spencer's Dad

    11 year old boy with PMD Luekodystrophy
    Nonambulatory, nonverbal, nonweight bearing
    VRO and Pemberton hip reconstruction at age 5
    Nissen fundo at at age 7
    Subdermal spinal drug pump at age 9
    Complete Spinal Fusion Jan. 9, 2007 at age 10.
    118 degree curve before surgery - less than 25 after!!

  8. #8
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Spencer's Dad,

    I'm sure I'm not the only one with tears running down my face. Thanks for sharing those thoughts. May Spencer continue to do wonderfully and recover quickly.

    I agree that a thankful heart is one that wants to help others. I guess we are all here sharing and helping each other because, despite what we have all been through - some more than others - we can all find things to be thankful for.

    take care,
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  9. #9
    Join Date
    Jan 2006
    Location
    Tasmania
    Posts
    259
    How right you are mariaf. Yep and the tears are happening again Robert. Besides myself having scoliosis my son is 31 years old and going blind due to diabetes.
    Sometimes I really feel as if I just cant go on, and pray and pray to god to please help him and others who are going through the same. Then I read an uplifting story like Spencers and your posts, and know that there are other people who are going through worse, and that poem "footprints" comes to mind. It all makes me realise that I am not the only parent who is "hurting" no matter what age our children are, they are still our precious ones.

    I think honestly you are a wonderful father and human being Robert and that incredible little boy is so lucky to have you.

    God bless,
    Lorraine. (Macky)
    Last edited by macky; 01-13-2007 at 04:40 AM.
    Operation 1966, Fused from T4 to L3, had Harrington rods inserted. Originally had an 85 degree Thoracic curve with lumbar scoliosis as well but had a good correction.
    Perfectly normal life till 1997 but now in a lot of pain daily. Consider myself very fortunate though.

  10. #10
    Join Date
    Dec 2006
    Location
    Arkansas
    Posts
    45
    Spencers Dad,
    Your comments,feelings and fears as well are a inspiration to me.I have been on the self pitty train for awhile now.The only thing I can think is WHY? Why us?why my little girl?What have we done wrong that we are bing punished?I have met alot of people who dont understand,and say whats the big deal its just scoli?Big deal?I would think her whole life is upside down and ours.The pain and tears of the shock of the news became unbearable.I was scared.Alot of people who tell me to stop babying my daughter of 12yrs old.At times as parents we still see them they way we did at birth.During one of my visits w/ her my husband took my hand and we walked around the hospital.He said some very strong words to me that will last in my heart forever.He said instead of crying and asking "why" all the time.He said smile and say "thank you" which at first I didnt get.As we continued our walk looking at these innocent children he said Honey ours is coming home w/us,there is no better gift.I got it all of a sudden.

  11. #11
    Join Date
    Jan 2007
    Location
    new jersey
    Posts
    154

    Spencers Dad,

    wow, what a great parent you are. Tell Spencer I said to get well soon... and that he has an awsome name. :]
    i have scoliosis. third boston brace. (:

  12. #12
    Join Date
    Jan 2007
    Posts
    34
    wow that is really moving!!!!! i feel really bad !! that is really truly amazing though and i think about that a lot!!! like how fortunate we are that we can all still walk and not handicapped even though we have scolios!!!!!

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