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Thread: Just need to vent

  1. #1
    Join Date
    Jun 2008
    Location
    Mississippi
    Posts
    126

    Just need to vent

    I am so tired of people saying things like Why is she having surgery?? I can't even tell her back is curved. or Do you think it may stop and not progress?? Shouldn't you wait??

    I know she is not completely twisted right now but it is headed that dirction. It is definately noticiable if you are looking at her without a shirt on. I mean she doesn't walk around without clothes. Also, isn't the point to correct before it gets really bad?? These are friends, not enemies and they mean well, but it doesn't help when everyone second guesses you even when you feel like your making a perfectly good decisoion. Thanks for letting me vent.

    I do love my friends and even my enemies but I wish people could just understand the stress of all of this.

  2. #2
    Join Date
    Oct 2008
    Posts
    78
    I doubt that anybody can understand, unless they are in the same boat

    I have a close friend, who has been dealing with this her whole life. I never questioned her surgery (could be because it was a revision for the broken hardware), but I also could not totally understand what she was going through

    Now, when my daughter was diagnosed and I got educated on the subject, I am looking back and lights go on when I think about my friend and her life

    My friends don't understand why I am bracing my 9.5 y.o., when she does not have a noticeable curve and is not in pain

    Hang in there!

  3. #3
    Join Date
    Jan 2007
    Location
    Tennessee
    Posts
    24
    I agree, unless they have been through it themselves or have had to make these tough decisions for their children, they will not understand. We have to respect their opinion, but not take any heart to them. I have not had to hear my families opinions for a couple of years now, but I know that once we set the surgery date for this summer, it will start again. We have made our decisions for reasons we believe. That's all that matters now. We follow through with our decisions, try to recover from the whole process as soon as possible, and vent about our well meaning loved ones here.

  4. #4
    Join Date
    Oct 2003
    Location
    Utah
    Posts
    1,010
    Hugs to you! Like you said, people (especially extended family) are generally well-meaning, but that doesn't mean they know the right things to say. No one is responsible for your decisions except you. Therefore, no one can tell you what you should or shouldn't do; how you should or shouldn't feel; etc. When someone is questioning your decision(s) maybe having a nice, to-the-point answer will help, then move on and change the subject, if necessary. Something like, "thank you for your opinion".

    Braydon has surgery every 6 months to lengthen the rods in his back. No one around me understands this concept. When someone finds out he's having surgery again, I get lots of questions about why again? what's going on? didn't one surgery fix it? etc. I've learned to give short, simple responses, then move on. The vast majority of people don't want an explanation. They want to be right. Period.

    My long-winded point is that you must have 100% confidence in your decisions. Sharing experiences with other families (ie, on this list, and others) will help you have that confidence because they/we have BTDT. We know the emotional roller coaster you are going through. We know the doubt you continue to place within yourself because of these kinds of people. We know that having supporting, communicative physicians/assistants helps these feelings. Well-intended family members are generally clueless.

    Hang in there. You are doing great. Lots of deep breaths, and know you are not alone in your feelings. As long as you know you and your DD are making the right choices, no one else matters. They don't deserve your energy spent worrying about why they make their comments. We care too.
    Carmell
    mom to Kara, idiopathic scoliosis, Blake 19, GERD and Braydon 14, VACTERL, GERD, DGE, VEPTR #137, thoracic insufficiency, rib anomalies, congenital scoliosis, missing coccyx, fatty filum/TC, anal stenosis, horseshoe kidney, dbl ureter in left kidney, ureterocele, kidney reflux, neurogenic bladder, bilateral hip dysplasia, right leg/foot dyplasia, tibial torsion, clubfoot with 8 toes, pes cavus, single umblilical artery, etc. http://carmellb-ivil.tripod.com/myfamily/

  5. #5
    Join Date
    Aug 2004
    Location
    ny
    Posts
    1,809
    Quote Originally Posted by Carmell View Post
    The vast majority of people don't want an explanation. They want to be right. Period.
    How true, Carmell.

    In fact, I'm sure that statement could be applied to lots of topics, not just scoliosis. Sometimes people say things NOT because they want to "understand" but because they want THEIR views heard - and accepted. Not the ideal type of person to discuss anything with IMHO.

    Smileyskl - Hugs from me too! I think that's part of what bonds all of us so much - the fact that nobody else, as well meaning as they might be, truly understands what we are going through nor do they understand the very complicated condition called scoliosis. Those of us who have been dealing with it for years don't even understand EVERYTHING about the condition, so how could "outsiders"? Best to not let what they say get to you too much if you can help it - and vent your feelings here, with us, anytime
    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/

  6. #6
    Join Date
    Sep 2008
    Posts
    336
    Quote Originally Posted by smileyskl View Post
    I am so tired of people saying things like Why is she having surgery?? I can't even tell her back is curved. or Do you think it may stop and not progress?? Shouldn't you wait??

    I know she is not completely twisted right now but it is headed that dirction. It is definately noticiable if you are looking at her without a shirt on. I mean she doesn't walk around without clothes. Also, isn't the point to correct before it gets really bad?? These are friends, not enemies and they mean well, but it doesn't help when everyone second guesses you even when you feel like your making a perfectly good decisoion. Thanks for letting me vent.

    I do love my friends and even my enemies but I wish people could just understand the stress of all of this.
    I had the same thing happen to me several months ago and the people on this forum were a great support.

    And yes, it came from a dear friend of mine.

    Try to forgive them and move on. They don't understand and may even be well-meaning. But right now, we understand that is not what you need to hear.

    Take care and concentrate on your dd!

    Marian

  7. #7
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    I had the same thing happen both before and after the surgery with both friends and relatives. People thought I was overreacting about the seriousness of the situation and questioned the need for surgery. My father's new wife suggested, about a week after the surgery, that all Alexander needed to do to feel stronger was to go running and work out instead of sitting around the house so much and walking so slowly and carefully on our walks. Most people are just clueless about what we go through with this. They can't relate to all the appointments and attempts to treat the curve prior to surgery or the ongoing need for follow-up and the emotions associated with that.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  8. #8
    Join Date
    Jun 2008
    Location
    Mississippi
    Posts
    126

    Thanks everyone

    Thanks so much everyone!! Its not even really like me to let things people say get to me. I guess I am just stressed. It is true that if you don't go to all the visits and doctors appt., bracing, consulatations, etc. that there is no way someone can possible really understand. Thankfully, my mom and my husband has done all this with my daughter and I and they totally understand and are very supportive. I am so glad to have found this group as soon as I did. It is such a great blessing to talk to people who have been there done that. Thanks for the encouragement and I will try not to throw too many tantrums. I think I will use that line, Carmell, "Thanks for your opinion" - then smile and change the subject. Thanks for the advice.

    Sharon

  9. #9
    Join Date
    Apr 2007
    Location
    Seattle, WA
    Posts
    385
    Hang in there. You will feel so much better after the surgery.
    Laurie

    Mother of Alexander & Zachary:
    Alex is 16 years old and in the 11th grade. He has congenital scoliosis due to a hemivertebrae at T10. Wore a TLSO brace for 3 1/2 years. Pre-op curves were T45 & L65; curves post-op are approx. T31 & L34. Had a posterior spinal fusion from T8 to L3 on 7/12/07 at age 12. Doing great now in so many ways, but still working on improving posture.
    Zach is 13 years old and very energetic.

  10. #10
    Join Date
    Jan 2009
    Location
    Indiana
    Posts
    43
    Sharon, DITTO to everything you said. Its astonishing what some people(family included) say to you or question you about??!! I just keep reminding myself that they probably mean well, but they are just uninformed and haven't experienced what we are all going through. Pretty soon this part will be behind us! Sometimes, I feel not soon enough.
    Tracy

  11. #11
    Join Date
    Oct 2006
    Posts
    132
    I can relate. I don't get a lot of it but enough.

    It really is hard when a lot of people don't really have a clue for scoliosis. I'm thinking if you told someone they needed to have open heart surgery, they wouldn't even give it a 2nd thought that it would be needed. However, with scoliosis a lot of times it's the "it's not that bad" stuff starts.

    Hang in there.
    Becky
    Mom to DD (15) with S 48*+ curve
    Had her surgery March 9, 2009

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