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Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 3:35 pm
by LydiasMommy
katep wrote:Most people who stick around on these boards after their children are older, do so because their children were injured severely enough that the injury is still a big component of life years and decades later. That's not a choice, it is an unfortunate fact of life for some.
For quite a long time, it seemed that only the parents or more severely injured children ever even FOUND this site. In the past, many parents of children with very mild injuries never even learned the name of their children's temporary condition! We have had several parents whose 2nd or 3rd child was severely injured, and it was only THEN that they found out the name of that transient condition their first or second child had!! Now we have more educated parents and more parents coming here when their kids are still in the very early stages of a full recovery. I'm glad to see that the statistics seem to not be completely made up - that most kids really DO make a full recovery early on. I am very glad for those parents whose children were injured mildly enough that they can "graduate" from worrying about BPI and it's continued effects.
However... I would like to ask those of you whose children have such mild injuries to please try to be sensitive. Yes, surgery is a choice, but the need for surgery is something about which you have no choice... and certainly something NO ONE would ever choose willingly for their child, for no good reason. LydiasMommy, I hope you don't feel picked on by this. It's wonderful that you are not "considering" surgery for your child. Truly! But the reason you are not considering it is because obviously it would be a silly decision if your child is expected to make a full recovery without surgery. There is not a parent reading here who would not rather be in your shoes than struggling with the deciding on a surgery that MIGHT MAYBE give their child a chance at better movement and function. Chances are that if your child continues with her excellent recovery, your attention will eventually turn to other, more pressing matters, and you won't come around much anymore. You won't have the need. And that is completely normal. But that is why parents of children with mild, fully recoverable injuries don't tend to populate these boards. Why would they?
My child has "only" needed one surgery. Truthfully, he still "needs" another one... but so far the options to help with what he still lacks would risk too much of what he already has, or are still too new for us to consider for his level of limitations. Please count yourself lucky that your child had a mild enough injury that she expects full or nearly full recovery without any help. Any of us whose children have had surgery would have gladly chosen that scenario for our kids.
Kate
First of all, I am truly sorry that you and your family have had to go through so much with your son and surgery, I really am. I can only imagine the heartache you have had to endure.
I read your reply twice now because I didn't want to be upset by it, but to be honest I do feel "picked on." I was under the impression that this was a place I could come to and talk to other people who are going through a hard time as well. I didn't know that I wasn't particularly welcome here if my daughter's injury was on the mild side. I certainly didn't mean to sound like I was bragging that her injury is mild, or that she might not need surgery. We almost lost her when she born, she wasn't breathing and they had to do CPR on her to get her heart beating. I spent 3 days in a different hospital before I could even meet her and hold her. From the day we brought her home we have been doing nothing but taking her to PT, taking her to the neurologist, exercising her at home until none of us can take it anymore, all in the hopes that one day she will regain complete function of her arm. We spent weeks just watching her arm hang limply, hoping and praying that there was something we could do to help her. This is my first baby, and no matter how "mild" her injury is in comparison to others on this forum, it is still major to me. And when I posted about not planning on doing surgery, I was not trying to insinuate that parents always have a choice in the matter, or that it is in any way a bad choice to do surgery. If Lydia had an avulsion, we wouldn't even have thought twice about it. I would never judge another family for chosing what is best for their child, and I am sorry if you felt that way. I was just trying to be open and honest by saying that even if the Dr told us she would benefit from it, we decided we couldn't go through any more potential heartbreak right now. I am not "most parents," and I had sincerely planned on being involved in this network, even if/when Lydia makes a recovery. But to be honest, I am feeling a little bit attacked and will probably just try to find the support I need elsewhere. Thank you to everyone who gave me kind words of encouragement, I really do appreciate it. Good luck to you all.
Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 5:07 pm
by katep
I'm sorry that you felt attacked. Parts of your post DID sound (to me) like they were bragging that you were "not going to consider surgery". That was all I was trying to point out.
Kate
Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 5:43 pm
by jmar
lydiasmommy,
i have a very mild injury also that happened 5 months ago. i would not appreciate those comments either. my injury , no matter how mild, is still severe to me. if i have a broken wrist and someone else has 2 broken arms and 2 broken legs, that does not take away the seriousness of my broken wrist. hang in there and most everyone else will be supportive of you.
Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 5:57 pm
by katep
Somehow my post came across as saying that parents of children with "mild" injuries don't have a right to be worried. I'm sincerely sorry about that. In fact, my son has a "mild" injury compared to probably the majority on this site. I got tons of support from those same parents, and I'm really sorry I did not sound more supportive. There is nothing worse than taking care of your precious baby for 9 months only to have that all ripped from you (sometimes quite literally) when he/she is born. It's horrible and it is horrible whether or not the child recovers completely or needs multiple surgeries to have even the barest of function. I've been there... we all have.
But is it really so wrong to ask for any sort of sensitivity - even IF someone is going through that horribly difficult time - when they reach out on a site where parents are dealing with this injury - STILL - years after their children were born? When the place is populated with parents who still struggle with the lingering effects of this injury in their 6, 10 or 15 year olds? When those parents would give ANYTHING to "not consider" surgery for their kids? I just find that hard to believe that that is so unfair to ask.
Kate
Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 9:56 pm
by jmar
the only thing i can say is this board is supposed to be positive and encouraging.
Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 10:21 pm
by katep
Yes, the group is supposed to be positive and supportive. That's why I pointed out how the first post sounded like judgement against parents who have had to "choose" surgery for their kids. Reading it HURT, and since I didn't think it was intended to come across that way, I attempted to point out how a little more sensitivity would have been nice. I think the "positive and supportive" thing should go both ways... don't you?
Kate
Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 10:51 pm
by LydiasMommy
Ok this is just getting ridiculous now. If you honestly didn't think I meant it the way you took it, then why not give me the benefit of the doubt? Especially since it is impossible to read emotion and inflection through the computer. I am trying to keep an open mind but am still having trouble seeing which part of my post was hurtful? I see lots of parents posting on here asking for advice on certain procedures or surgeries from others who have gone through it. How is that any different from what I did? I simply was reaching out and hoping to hear from someone who got positive results without surgery. Like I said, if Lydia's injury was more severe we wouldn't have thought twice about going ahead with whatever surgery would be necessary. But when I posted the first time, I was trying to anticipate what the specialist was going to advise. I was just saying that if he suggested surgery, we wouldn't necessarily want to rush into it since Lydia seems to be progressing well. I'm new to this whole thing and I didn't know what to expect as far as recovery goes (is it only possible to recover if you have surgery? Or can you recover sometimes without it?) I was afraid that surgery would be suggested to us even if it isn't imperative. The whole reason we took Lydia to this hospital was because we were advised to since our hospital doesn't "believe" in surgery to correct her condition. Why in the world would I post something just to "rub it in" that we might possibly be in the position to not need surgery? I'm not an insenstive a-hole. I am kind of getting a little annoyed at having to defend myself for asking for some encouragement. Yes, I do need a little bit of that even though we are extremely luck to be on the mild end of the spectrum. Like the previous poster said, just because ours is a better-case scenario doesn't mean it isn't still a struggle for our family.
Re: Anyone NOT need surgery?
Posted: Fri Nov 05, 2010 10:54 pm
by katep
I guess my point of view is just utterly invalid, then. Sorry to have bothered you.
Re: Anyone NOT need surgery?
Posted: Sat Nov 06, 2010 1:02 am
by jmar
lydiasmommy
i wish the best for you and your baby girl. please do not leave this board. there are a lot of people that truly care about you and your baby and will be super supportive of your decisions. as for katep i hope the best for your son as well. we care about you also even if you dont think so.