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Thread: feeling so much guilt...

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    roetik77 roetik77's Avatar
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    Default feeling so much guilt...

    Cameron is just over 4 months old and filled with nothing but smiles, giggles, love and trust. I am so over the top feeling guilt and sadness for what he is facing in 10 days!!! I know he "will never remember" and blah blah blah but I can't help but feel we are putting him through a nightmare. I know it's for the best and there is sadly no other choice but still... I feel like he isn't going to look at us the same after all this. Is this stupid, given that he is so young?? I just cried today looking at him and telling him how he has to be so strong and a little fighter and how much harder it will be on US than him. I can't even cope with his surgery date so quickly approaching. My eyes are swelling up as I type this and my heart is just breaking. The look of total admiration in his eyes is making things SOOOO much harder. Oh man, I really need to find the strength to get through this. :(

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    Brandon's mommy Gretchen Gretchen's Avatar
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    Oh momma, Im so sorry. This was my story, this is every other parents on this site story. The dreaded guilt, how could "we" do this to a little tiny baby??? I hated hearing "they will never remember", you will always remember and those words even ment in incoragement still hurt. Im so sorry you are having to put your baby through this but I think you are a wonderful mommy. You should look at the post op photos of the smiling babies. You will still cry but believe me, they do smile so quickly afterwords. (((BIG HUGS)))
    Gretchen mommy to Andrew Charles 4/25/07, Brandon Danger (bicoronal synostosis) 7/12/09
    CVR/FOA done 2/5/10 - Dr. Scott Elton and Dr. Rodney Schmelzer of Banner Pediatric Spec.
    Cardons Childrens Center- Mesa, AZ
    www.crazylongtins.blogspot.com
    Hunter 9/9/99
    Brooke 11 6/6/98

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    roetik77 roetik77's Avatar
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    Gretchen... thank you! If one more person says "he will never remember" I fear I might flip out. I honestly don't think those would ever be my words to another parent in this situation. But I guess not living it, you don't know what to say. I know people are trying to comfort us but it's not helping. While Cameron won't remember, he will have the scars for life and WE will never forget. He still has to live it and I know they bounce back fast people say but no words help right now. BUT, I know all my fellow cranio mommies know the words of wisdom and can completely relate. I find more comfort here than anywhere else!!!

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    Brandon's mommy Gretchen Gretchen's Avatar
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    Yes, this is the best place ever. I see why now so many moms stay on long after. As we got closer to Brandon's surgery the more and more I heard that he would not remember. I finally did flip out and started answering back "how do you know he wont remember?" Part of me feels like he will always remember. Not in the way adults do but something that major does change something in these little babies, something they or we may never fully understand until their old enough to confront it.
    Gretchen mommy to Andrew Charles 4/25/07, Brandon Danger (bicoronal synostosis) 7/12/09
    CVR/FOA done 2/5/10 - Dr. Scott Elton and Dr. Rodney Schmelzer of Banner Pediatric Spec.
    Cardons Childrens Center- Mesa, AZ
    www.crazylongtins.blogspot.com
    Hunter 9/9/99
    Brooke 11 6/6/98

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    MBSzafranski MBSzafranski's Avatar
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    That is one of the hardest things about it, for sure! It is so hard to "do this to them" when you can't explain it to them. I think that was the hardest part about handing Ben off for surgery- he was so smiley and talkative the morning of surgery. I was certain that I would never see that perfect smile again, but 24 hours later he woke up with a big smile and talking to me like nothing ever happened.

    We understand where you are coming from! It is so hard to make this decision for another person. I think every one of us would go through it ourselves if we could, in order to not make our babies. You are making the best decision for your baby- keep reminding yourself of that. You will make it through and he will be back to his normal self.

    Lots of hugs!
    Maggie Szafranski
    Tulsa, OK

    mom of:
    Ben- born 11/24/2009 - Sagittal.
    *Surgery w/ Dr. Genecov 3/3/10*
    *Helmet Therapy 3/19/10 until 7/22/10*
    Luke- born 10/11/2007
    Jack- born 6/26/06



    www.bensheadblog.blogspot.com

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    Landie Landie's Avatar
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    i dont believe that they never remember. my eldest daughter was 11 months when they operated her twice. a year later when she had to go for anonther catscan she starting having nightmares and will wake up screaming. it all started when we went back to the neurosurgeon for a checkup. and after the scan when we came home she was fine. she still have big fears for a dr and hospital.

    oh hun its not your fault, and this doesnt sounds like this but you are doing the best for your baby!! just think what will happen if your baby doesn't have the surgery!

    good luck and all the best

  7. #7
    We're on the other side!! dannlark is just starting out dannlark's Avatar
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    Oh, Momma, it's such a hard place to be right now. Truly between a rock and a hard place. People mean well, and really they are right, even when you just want to scream in their faces that it's NOT OK!!!!! These babes, early on, really have very little memory of this event. And as parents it's our job to get them safely to the other side with cuddles and kisses and lots of strength. WE feel the guilt that they have to go through this, but they only see it as a small blip on the radar. Hang in there, and vent here when it seems overwhelming. That's what we are here for. You can do this, and so can your beautiful little bub. The othe side is SO beautiful once you're post op and in recovery... I promise!!!! You'll have your good days and the bad, and eventualy, you make it, safe and sound... (((((HUGS)))))
    Larkin
    Mom to 3 boys: Aidan 9/8/2000 Camden 7/29/2003 Ian 7/29/2007 - Upper end "Mild" metopic. Surgery 8/27/08, Dr. Fearon, Medical City Dallas. We're on the other side!!!
    http://www.caringbridge.org/visit/ianrodriguez


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    123aincol3 123aincol3's Avatar
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    This is the nightmare part coming up to the surgery! I also hated that when people would say things that: ah sure she'll never remember or at least its fixable sometimes I just wanted to slap them !!! I agree with Landie i dont agree that they don't remember cause Sheenagh has this phobia with her feet and it only started after her surgery cause the doc's could only get her bloods from her feet and we had to hold her down 3 different times.

    You are definitely doing the right thing although it does not feel like it right now. But our little uns do bounce back although I didn't believe that either lol!

    Big Hugs to you and your family!
    Aine partner to Colin
    Mum to
    Conal 8
    Kelan 3
    Sheenagh 1 (Sagittal Synostosis)
    Had surgery 02 Mar 2009 in The Royal Belfast Hospital for Sick Children

    We are on the other side

  9. #9
    charliesmummy will become famous soon enough charliesmummy's Avatar
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    This is deffinately the toughest part, the last couple of weeks.
    I remember it so well as though it was yesterday & it's 3 years ago in september. The thoughts & fears that fly through your mind, the worry & the guilt of what your about to do to your beautiful little baby.
    I can only say that you are not alone in what you are feeling & to asure you that your fears are perfectly normal. Doesnt make it easier i know, but when the time comes you will find the strength from within to get you through and your beautiful little man will amaze you in so many ways you will just burst with pride.

    Hang in there sweetie, we are here with you every step of the way xxx
    Jacqui - mummy to Charlie, Metopic cranio & Harry (no cranio)

    Surgery carried out on 6th Sep 2007
    CVR/FOA at John Radcliffe Hospital Oxford
    Surgeon - David Johnson

    Charlie's Metopic Journey - www.craniokids.org/support/showthread.php?t=16222

  10. #10
    Moderator craniomommynbaby is on a distinguished road craniomommynbaby's Avatar
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    I had cranio surgery as a baby, and I do not remember it. The first time I have conscious memories of knowing about my cranio was when my mother stopped me from playing t-ball in second grade. I didn't understand why I could not play, and she had to explain to me that I had a soft spot still in my head. I didn't find out as much about the surgery until further down the road.
    Having had to put my son through the same surgery, I reflected quite a bit on my own experience. Although I do not have a recollection of the events, I really think that the experience helped to make me who I am today, and it is not a bad thing at all.
    In Simon's case, he had it at 6 months, but I do not feel that he has had any long-term effects. Now, I know he will remember the surgery he had last year, at 4-1/2 years old. Still, if someone meets him today with no knowledge, they have no idea. His personality did not change. He is still my sweet and loving little boy, just as I am sure your Cameron will be. The next couple of weeks will be rough on you, but you will see just how quickly these kids bounce back.
    Cindy
    *Skull bone removal surgery in summer of '77 for right unicoronal*
    Mommy to Simon
    *CVR w/ FOA surgery on June 29, 2005 for bicoronal*
    *CVR with bone graft and bone paste surgery on July 15, 2009 for bicoronal and defects*
    *Bone grafts and titanium plates on June 27, 2012 for defects*
    Soul Mate to Chris
    See our cranio journey at
    https://sites.google.com/site/scofieldfamilycranio/ AND http://craniomommynbaby.blogspot.com

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