United Brachial Plexus Network, Inc.

Needing support does not at all mean that you are feeling sorry for yourself! Support comes in many different forms. I do not feel at all sorry for my self yet I still need support when I am facing yet another surgery, this time to reduce pain in my back and shoulder caused by my bpi. I do not feel sorry that this happened to me, this injury has made me who I am today. Even so, it is still nice to be able to talk to all the people here because they understand.
I think it is unfair to say "stop trying to fix it" I would love to stop trying to fix it, do you really think four going on five surgeries is something that I enjoy? I "fix" it so I dont have so much pain, so I can go on with my life.

I guess you are very fortunate to have such a great outlook but I dont think it is fair to be mad because many people are hurting. They are not sorry for them selves, they are sorry for their child or parents or grandchild. I still feel sad about the pain that my parents have every day of their life, was this my fault? NO but it happened and they are hurting, they are not sorry for them selves!

I hope that you are able to see this side of the story as well!

Amy 19 ROBPI from MN
hope16_05@hotmail.com

Amy,

Great post, but I would disagree on one thing. So many parents don't adequately deal with or grieve what *they* themselves lost in the course of their child being injured, and that can most definitely keep you mired in sadness... A lot of the sadness parents feel *is* for themselves, and *needs* to be for themselves, but that is something that is difficult to acknowledge and not feel additional guilt about.

Parents need to know it is *OK* for them to mourn and grieve the loss this injury brings! Yes, it was the child who primarily was injured (many mothers also suffered physical injury in the process) but the parents also suffer losses because of this injury!

*We lost our faith that many or even most medical professionals know enough or care enough to protect us or our loved ones

*We lost faith in ourselves that we could protect our own child, the one for whom you would cut off your own limb to restore theirs

*We lost, or were threatened with loss of, dreams we held for our children for nine months (yes, new dreams do replace them, but it is a loss nonetheless that needs to be felt, grieved, and let go)

*We may have lost a loving partner, a supportive family, friends or connections to community

*We may have lost career or life choices because of the financial burden this injury can bring

It is very hard being a parent, especially a mother, and having your world ripped apart and turned upside down on what should have been one of the happiest days of your life, during a time that is already filled with emotional and hormonal upheaval. Adequate grief over what we also lost on that day is necessary, in order to move on with life and be the best parents to the children we have. But it is difficult for us as parents to grieve effectively and honestly, when you feel guilty for the feelings you have. There are stages of grief, and they apply here, too!

Hopefully there is a balance of perspectives on this board, so that new parents can see that the intense sadness and grief they feel over this injury *can* and *does* get better. But the worst and least productive way to deal with loss is to deny grief... it only makes the pain linger on and on and on...

Kate

Wow Kath, Amy and Kate....Well Put,
I think we all agree with one thing here, that this injury is preventable. Was I upset that my son was injured....sure was...I am still, no. Have a fought to get him fixed absolutely, is he perfect "YES" in my eyes at least. He can do everything any on the child can do......does he have"ISSUES" asscociated with BPI that I wish he didn't "YES" (SID) I think here we must remember that the reason this injury is known is because of the internet....and wondeful sights like this.....Yes, it was known before but never really discussed. When I had my daughter 15 years ago, I had shoulder dystocia but never, ever heard the words"ERB's Palsy" or "Brachial Plexus Injury" seven years later I had Brandon and still I had to look for the informaation but it was there. The doctors wouldn't tell me the truth I had to find it for myself.
Rachel, In my opinion I think that society is different now a days.....children say more, they see more. my son does not know he is different and if he does he doesn't tell me.....he does everything every little 7 year old boy does and more....why, because while I might have been feeling sorry for myself, I never ever, let him hear that he couldn't do something......Yes, I "mourned" so to speak for the first two years his life....am I resentful, yes, because I missed a whole lot of things I should've seen. But that is okay, my son is no more the worse for wear. His PE teacher loves the fact that he is so able to everything and is so willing to try everything and then some. I just think that the parents of the older BPI's had the information they would have used it too, just as we do here. I think that this sight is a blessing, I would never have heard of some of this stuff, if I didn't visit here. The adult BPI's are ever so gracious to to help us out and give there information, I do think people come here for the support they need and that is good. Gayle

'Bless everyone who posted on this. See what I mean when I said it can be a very healing process to share & vent?...or, if we let it , that is. What a wonderful perspective Kath has; I've been able to understand, accept and forgive my own mother(deceased & would never talk to me re my BPI)because of what Kath has written. I never thought of things "in her light" until I read what Kath has written.
Thanks for "Listening"...
Hugs everyone,
Carolyn J
LOBPI, age 67 & proud of it!

Rachel,
how old are you? I am asking because I think that all of our children will think WOW what was all this fuss over? But I know from other adults with OBPI on this board, that eventually you start feeling over use pains in the long run. I think that is what most parents on this board worry about. My son has been "FIXED" or so I hope he has but the reason I fought to get him "FIXED" was to ease his pain as time goes by. I didn't want him to have the pain that some of the adults her speak of. Even Amy who is 19 speaks of pain. This was the reason that I chose to fix him. Gayle mom of Brandon ROBPI

Rachel, I do agree with you up to a point, but inadvertantly, you have actually given support here...in a kind of back handed way when you posted this; "I have been a gymnast, a drum major, a trumpet player, a mellophone player, a tuba player, a trombone player, a dancer a colorguard member, and for work, I am a server. So I carry around trays with my good arm, while my other one has to just adjust a little to do things differently. I work with people who have known me for a year before they find about my BP if I happen to mention something."

All very positive stuff that should actually encourage the parents of OBPI kids.

I personally have not seen any one of the adult OBPI posting anything that I could consider 'feeling sorry for themselves,' and I've been posting and reading here for years.

I do believe that the mums do have a right, and a need to feel sorry and depressed over what happened to their baby, and where better to express that than here amongst those who truly understand some of what they are going through?

Lizzy F TBPI for 13 years

Thank you LizzyF for your support. Everyone hear really brings a new type of support to this forum.
gayle mom of Brandon ROBPI

WOW! What a nice thread, I was worried it would get nasty but everyone's really listening to one another.
I don't think anyone doubts how terrible this is for a parent, and I do understand the worry about long term after effect pains, term but as almost none of the long term adults posting here have been 'fixed' (and sure, we do get pain, really bad pain sometimes) and we are all still smiling, living, being happy, PLEASE don't let worrying about this get you down. As Lizzy says, every message like this from those who live with bpi day in, day out, lifelong, isn't denying the need and wish of parents to vent their worries, it's confirming that for most of us life with an unfixed bpi, including the nerve pain, long term overuse pains, an arm so deformed that people stop and stare in the street...etc etc etc....can be normal (it's normal for me!) and frankly my life's JUST GREAT! Your kids will be fine, that's what the adults here are saying, NOT saying you guys are wrong to worry, of course that's natural.

Carolyn, it makes me laugh every time I read people's ages here, I tend to think of all of us as being about 19, in my mind's eye, and reading the 'real' ages is a surprise every time! Heck, I'm not 47! How did that happen? Nope, I'm 19 and so are the rest of us....:0)
Jen NZ

Wow, Jen, this tread has turned out so nicely because the few parents that have posted are rubbing each other's back. The topic here is a angry young BPI woman that is criticizing your exact behavior.

Wow! Jen, you are selectively listening to everyone except the original poster... Who is down right correct in her observations. We write about our kids becuase they are not aware, but now we have a young adult that is demanding balance and equity in our statements about our kids..... This young woman requires great respect. She is breaking off into her own life. Maturing to see that parent may often be serving themselves rather than their child...