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Thread: Well-meaning "friends"

  1. #1
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    Well-meaning "friends"

    Anyone have "friends" or relatives that don't understand the decision for surgery that we parents are having to make for our children?

    I have a "friend" who has been trying to push chiropractic care on me. When I was discussing this with her last night and talking about insurance and such covering the costs, she actually said to me, "Isn't your dd worth it?"

    I just about blew a gasket at her. She has NO idea about what a struggle this has been for me emotionally.

    I am still very upset by this. I would move heaven and earth for my child. I wish it were me instead of my dd having to face this. And even if the surgeon we chose would not have taken our insurance, we were going to find a way to make this work for my dd.

    She kept telling me of successes this chiro had with patients, but when I tried to pin her down specifically about scoliosis, she didn't have an answer for me.

    Btw, when I asked my "friend" about the success rate her chiro had with scoliosis, she said she didn't know, but she had talked to her chiro (without my permission) about my child's case. Yet she didn't tell the chiro the degree of curve, etc. Her chiro said yes, they had great success with treating scoliosis.

    Thanks for letting me vent. I just cannot believe this happened.

  2. #2
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    That sounds extremely upsetting. It is very, very, very hard to not react in those circumstances.

    Stakes are high. Emotions are frazzled. It wears you down.

    Other folks don't have a clue. At times like this, the best we can do is just realize that.

    Consider the heated exchanges on this forum among folks with scoliosis and parents of kids with scoliosis. If there can be misunderstandings here, you can expect there to be even more among the general public.

    This quote is what I shoot for though often miss the mark...

    "To be hurt and to forgive is saintly, but beyond this is to understand and not be hurt at all." - the GHL

    All we can do is press ahead and do the best we can.

    Best regards,
    sharon
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  3. #3
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    I am so sorry you're having problems with your friend. Please forgive her/him. She apparantly knows nothing about Scoliosis and has never been in your shoes. Like many others here, I've been in your shoes and deciding to put my daughter through spinal fusion surgery was one of the hardest things I've ever had to do (watching her go into surgery was just as hard).

    When Jamie was trying to wear her Milwaukee brace I had a similar problem with my mother-in-law. She totally blew off the severity of Jamie's condition and told me not to tell other family members about her Scoliosis! Scoliosis is a side effect of a condition that runs through several generations of my mother-in-law's family and yet she didn't want me to tell anyone. She also downplayed everything about Jamie's back even though she had never seen an x-ray, Jamie's back or gone to even one doctor appointment. It got so bad that I finally couldn't stand it any more and took Jamie's Milwaukee brace and pictures of Jamie in the brace and showed her. Well, she broke down in tears and asked me if that was really what they wanted Jamie to wear.

    I thought I had the situation under control and she understood but I was wrong. Jamie had her surgery about two weeks before Christmas and she insisted that I drag her out to her house for the day! And when I refused, she thought she was going to drag the whole family to our house for Christmas day! I put my foot down and told her when she could come and for how long. Of course she didn't like it, but too bad. And honestly, to this day, (Jamie will be 4 years post-op on the 7th of Dec) I really don't think she gets just how big Jamie's surgery was.

    I don't regret any part of my decisions when it comes to Jamie. Stick to your guns and trust your instincts. I'm sure you know by now that a chiro isn't the answer for your daughter. Feel free to vent here any time! I sorry I don't have any answers on how to deal with your friend. If need be, avoid her for the time being. Good luck.

    Mary Lou
    Last edited by Snoopy; 11-29-2008 at 03:13 PM.
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  4. #4
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    Thank you ladies. I really didn't mean to be such a complainer.

    I do realize that my friend has no idea what we're going through. Unfortunately, she caught me at a bad time as well. Other things are going on right now which we're also dealing with. So by the end of the day yesterday when she called and I picked up the phone, I was quite frazzled from trying to hold things together with some other situations.

    Thanks for letting me vent. I don't want to be on bad terms with my friend, but I think Mary Lou may be right in that I need to avoid contact with her for the time being. It's hard b/c I know things are not going well in her life either, but I think I need to take time and concentrate on my family situations.

    <sigh>

    Marian

  5. #5
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    I didn't take you to be a complainer.

    This is a good place for posts like that in my opinion. We all can relate.

    sharon
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  6. #6
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    I can definitely relate to what you're going through with that friend. One of my relatives had no idea what we were dealing with and made similar comments about "cures" by the so-called specialist I was apparently rejecting. After Alexander's surgery, so many people thought I was being over-protective and unnecessarily restricting him. My dad's partner, now my step-mother, told me about a week and a half after the surgery that Alexander should just get more active and go for a run; this would make him feel more energetic.

    The surgery made me feel very lonely at times because no one could really relate to what I was going through. Even recently, Alexander was left out of a good friend's birthday celebration because it was a rock climbing party. I think they were thinking of his post-op recovery because when I called the mother (supposedly my friend) to figure out why this was occurring, she said they were protecting Alexander by leaving him out. She said she didn't think he could do climbing or that I'd let him do it. I had to tell her that he'd climbed a 50 foot tower at camp last summer and from now on to please ask before deciding that he couldn't do something.
    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.

  7. #7
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    Well said Sharon.

    This is the place to vent especially since we all understand.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  8. #8
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    Ugh, Laurie ...

    My kids are way past being left off party invites (I have a 19 year old RNC protestor - one of the ijits you saw tie-wrapped in St. Paul, and one's a 21 year old Marine - who DEFENDS her right to be an idiot), but I will never forget that kind of hurt to my kids. Or any OTHER hurt they felt - or feel NOW.

    To all of you parents who think "we adults" don't understand, remember many of us *were* those kids.

    I can understand, and would willingly go through this again in the place of one of my "kids". That's just being a Mom ... and, yeah ... idiotic friends claiming chiro can cure your child need to GO. You know you're doing what's right, even if it's not *easy*.

    Hang in there.

    Pam
    Fusion is NOT the end of the world.
    AIDS Walk Houston 2008 5K @ 33 days post op!


    41, dx'd JIS & Boston braced @ 10
    Pre-op 53, Post-op < 20
    Fused 2/5/08, T4-L1 ... Darrell S. Hanson, Houston


    VIEW MY X-RAYS
    EMAIL ME

  9. #9
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    Thanks Sharon, Mary Lou, Laurie, and Pam.

    I did join this forum for information and support. I'm very happy that I found you all!

    I guess I have to get a tougher skin as well because I'm sure that this won't be the last time.

    Thanks again ladies!

  10. #10
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    Thanks Pam and everyone,

    Yes, it really hurts me more than Alexander when he gets left out of things. He's sort of unaware and also seems like such an "old soul" about his situation and limitations.
    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.

  11. #11
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    Quote Originally Posted by laurieg6 View Post
    Thanks Pam and everyone,

    Yes, it really hurts me more than Alexander when he gets left out of things. He's sort of unaware and also seems like such an "old soul" about his situation and limitations.
    I hear ya', Laurie.

    We don't really make a big deal about dd's scoliosis (we just found it in Sept. anyway), but she is left out of a lot of things. I can understand about the "old soul" thing, too.

    Too bad there isn't a way to put our kids more in contact with each other.

    Marian

  12. #12
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    Alexander was on SpineKids briefly, around the time of his surgery. But he wasn't too interested in it for long. Almost no one on this forum lives in the Northwest but I know that people out East connect in person now and then.
    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.

  13. #13
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    Laurie and Marian,

    I agree with both of you--our kids need a way to talk and simply hang out with others who understand what they are going through. Jamie, too, went to Spinekids for a short period of time. I live on the East Coast and we have met a few people from this forum, but they all live more than an hour away, so we don't get our kids together too often.

    Mary Lou
    Mom to Jamie age 21-diagnosed at age 12-spinal fusion 12/7/2004-fused from T3-L2; and Tracy age 19, mild Scoliosis-diagnosed at age 18.

  14. #14
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    Jesse started wearing a brace in middle school (6th grade) and noticed a classmate wearing one. He talked with her about having scoliosis. I know it made him feel better knowing their was someone else in the same boat because he would tell me about their conversations on occasion. She must have told her parents about Jesse because her mom approached me at open house to introduce herself. Over the years when we've run into each other, we would "check in" about the kids.
    Before we knew Jesse needed surgery, he met a different girl in school who had it done. He's been talking with her about it since he found out about needing it. Well, today in the library he met a senior boy who had it done too. He showed him the scar.
    I'm glad he knows he's not alone and has these nearby "comrades".
    Bethany

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