United Brachial Plexus Network, Inc.

When I first saw this post, no one had yet responded. I was typing a reply but decided NOT to post, I was just so very angry. Those who know me and what I've done in my life and am doing now know that I have done so very many things despite having OBPI. I was nagry because I enjoy reading and posting on these boards and participating in Amy's chat to support and get support, to encourage be be encouraged, not b/c I am feeling sorry for myself. I have NEVER felt sorry for myself due to this BPI (other reasons yes, LOL). But I do think that if some parents are worried about their kids or the furure of their kids then they should be allowed to "talk" about it. Us "old-Timers" (I say this tongue-in-cheek Kathy) have been there, done that, bought the t-shirt. We can help giude others, young and old, parents or their kids (Like Brittney). We can give good insight into things. And yes if we need to have the occasional pity-party then so be it!
Thank you for listening, I'll get off my soap-box now
Marieke (30 yrs old LOBPI)

hey all some great reading on here!!
im 24 m from adelaide in australia and was born with erbs palsy, left arm!
i understand what racheal was saying and in some ways i feel the same as i live my life very similar to her doing anything anyone else can and i dont mind saying sometimes better than alot!! haha
the only thing i wanted to say to the parents is everyone wants their chils not to have this problem??? and that suport for youselves ie excellent if you want and need it. i just urge you to let the child make the decision as to if they want the extra support! if they decide they do, great. but my point is, as soon as you put them in a support group you make them diferent from normal kids and they dont have to be! i dont believe i am so i dont feel i need that support but that was a decision my parents let me make! thats my point! just let them make that choice!
anyways just my opinion!! hope u r a ll well !!!
Brett

After I gave birth I felt very guilty. The doctor also made me feel that it was my fault and actually said it was my fault. So my "recovery" as my child grew up was and is still not easy. Even though I know now what the facts are, there is the little nasty person sitting on my shoulder that tells me that it was still my fault. Then I heard from many of the adults about arthritis and pain and overuse and scoliosis and more and it scared me. And at the same time I had bpi specialists telling me the same thing. That if I didn't do "this" or "that" then my child would be in terrible shape later on in life.

It took me years to stop formal therapy and get my child mainstreamed and now that we are "normal" (meaning doing normal kid activities and things like all the other kids), I can look back and know exactly how I could have been so depressed, upset, guilty and grieving.

I think that being a mom with a little one just born is different now then it was many years ago. There are so many stresses, pressures, lawsuits, insurance, state financial help, state therapy, school laws for rights, bpi specialists all with different opinions. It's so overwhelming and so very COMPLICATED! And sometimes as a mom you want to step away but you can't because you want to do everything possible to help your child. And sometimes stepping away is the healthiest thing to do for everyone.

I THINK HAVING THE INJURY & PARENTING TO A CHILD W/ THIS INJURY ARE TWO TOTALLY DIFFERENT PERSPECTIVES. AS A PARENT YOU CANNOT HELP YORSELF FOR WANTING TO FIX YOUR CHILD. WE HAVE BEEN ALL OVER THE US TRYING TO FIND ANSWERS. EVERYONE KNOWS THE TRUTH, NO ONE CAN FIX THIS INJURY TOTALLY. BUT, AS A MOTHER I CAN LOOK BACK AND NOT HAVE ANY QUESTION I DID THE MOST FOR MY SON.

I just want to say that this board has taught me so much. Using this board is not about feeling sorry for my child or myself. When one's child, or themselves personally is faced with this injury that so little of the "regular world" seems to know about, this board is a vital resource, and a blessing.

When I was told that my child had ROBPI no pediatrician seemed to know what path to lead me down. They had to research her options, so as the only advocate for my infant I did the same, hence, finding UBPN. Without this board and those who post I would have been lost and THEN I would have been feeling sorry for my child and myself.

I personally find it unacceptable for anyone to simply do nothing and ignore a problem with their injured newborn, no matter what the injury is. You mentioned your parents aren’t feeling guilty, but did they ever do anything to try to help your arm? You see, help is what many people come to this board for. I am happy to hear that, you Rachel have had such a well balanced life with an injured arm, perhaps, by not ignoring your arm you may have been somewhere different at this point in your life. Who know? If you had a child tomorrow with this injury what would you do? Above all, if your arm is not an issue, why are you read the board?

I will be sure that when my child is old enough to verbalize her feelings, she will NEVER say I did nothing.

We are living our lives and enjoying every moment!! This injury and all it encompasses (OT, PT, and doctor’s appts.) are a part of our life. But I don’t think there is a parent out there that would let this injury stop them from raising a well rounded child whom they encourage to live everyday to their fullest potential.

my parents did nothing, I had a normal life. That was doing the most for me. There are lots of different perspectives, not all parents are angry, not all parents can fix their kid and kids don't blame their parents. We live as good as we can and we don't like reading all this angry stuff. Angry does not help anyone.

Mlynn and the second "NULL"
That is EXACTLU why I did what I did....because I didn't want my son to say that I didn't try to fix him.


Thank you for stating that sooooo.....clearly
Gayle

To NULL and "Guest"...
There is NEVER anything wrong with VENTING our feelings of Anger and Frustration & "Burnout". It is very HEATHY to VENT.I personally worry if/when somebody doesn't VENT & "Stuffs it down". All who come here to all 3 Message Boards and post regularly understand and have experience that same thing. We are here for you. Even Adults with OBPI or TBPI do experience same at one time or another. I personally don't really "Get IT" until I read,feel and share. Sometimes I have to read something 5+ times.

That's my "2 Cents" on this.
Hugs all around,
Carolyn Adult LOBPI
Age 67 & proud of it!

As everyone has explained quite well, yes I'm sure there are days some of us feel down, whether it's due to pain, or a comment someone makes (no matter what your age), or you feel like your all alone (for whatever reason, BPI related or not). This site has given us somewhere to turn.
I know for myself, my confidence has risen by just knowing there are other people like me I can turn to. For example, I'm over 6 months pregnant for the first time, and I'm not sure how I will do certain things for my baby. I can simply come here and talk to those who've already been through it and get pointers from them (which may save me from many frustrations).
Let's just say it's nice to have wonderful people to talk to, and though it may seem like whining or feeling sorry for ourselves. But there is so much more to it than that.
We have fun here, and it's not all business all of the time.

-Traci

Traci
How nice... your going to have a baby!
You will do fine, you will manage and we will all help you with hints to make it easier....

Kath ( adult/robpi)