am I the only one....?

[RachelMadrigal]

I'm a little mad.
I keep reading all over here about how everyone needs support, how there are so many ways to fix this, how everyone needs to bond together and so on... am I the only one out there that isn't bothered by my arm? My arm is a good 9-10" shorter than my other, I cant do a bunch of things with it, but...

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.

It really makes me mad that everyone on here seems to be feeling sorry for themselves. The fact that you seem to need support says that you are feeling sorry for yourself. I have NEVER felt sorry for myself. My parents have never felt guilty about it. Nobody knows about my arm because I don't talk about it. I don't mention it. I don't EVER think about what I CAN'T do... I find a way to do it. I have always had it - its a part of me.

Stop spending so much time trying to fix it so you can start living life. Live your life.

Rachel

[admin]

I totally agree with you that many families here seem to be very focused on themselves. And I have gone through their process. When a child is unnecessarily injured at birth, families go through a very difficult grieving and acceptance process. For myself, my process has been extremely painful because I saw my child in utero using both of her arms and hand to suck and play with her toes. And I don't speak casually of my pain, pain that I have needed to ignore as a single parent... My life has been very, very difficult.

You need to believe that there are other parents like myself that eventually step outside of themselves as families, former profesionals... and are trying desperately to end not just the BPI but so many of the issues related to birthing injuried, lack of medical insurance, lack of legal protection....

[BIGJAVSMA]

Thats a real nice and supportive thing to say to parents whose lives have been turned upside down. For me personally, I'm ok with it. If my sons arm never works, that's what we deal with. But for you to post this on a SUPPORT board seems rude and judgemental. I come here to learn from other parents and BP vets and maybe in my journey I will be able to help another family be ok with BPI. I am so glad that you have and continue to do things, I know many of the parents who aren't letting this handicap run their child's life.

I appreciate the volunteers who run these SUPPORT boards and I can only hope that JAvier turns out to be as vibrant and brave as people like NAncy, Courtney, Amy and Brittney.

Marlyn mom to Javier (almost 2 y/o w/ severe-global ROBPI that doesn't slow him down one bit)

[admin]

BIGJAVSMA,

Are you responding with anger to the original poster, or to the null poster? I am just completely confused, "am I the only one...." was expressing her bitterness, and then null was trying to explain that the selfishness of parents has a source...

Are you okay? My sense is that you may be having a bad night.

[jennyb]

Hi Rachel and all
I couldn't agree with you more, and when I first started posting here I tried to give the message that a bpi isn't a ruined life or a devastated life, it's just a different life, is all-I was so shocked by what I read here. I have also tried to point out to those who say that a bpi is terrible and if it doesn't get fixed then that's terrible too that when people who actually have a bpi read that, it's kind of hurtful, but I don't think most people get it. I thought by posting that way I would help parents see that, for the person with the bpi, it's not too bad. I think it's probably harder on the parents to be honest, luckily for me my parents were just so glad I was alive that losing my arm was not really something they worried about. I LOVE where Rachel says about spending time trying to fix the arm, because it was EXACTLY how I felt when I got my bpi. I turned down surgery and got on with my life and I have never regretted it. We are all different and in my opinion that is as valid and logical a way to deal with bpi as trying to fix it. I would stop short of advising anyone else to do it, but then Rachel's probably pretty upset right now, I know I was when I first came here.

Marlyn, (and any other parent who feels hurt by Rachel's comments) please don't get upset by what she is saying, she is just putting into words what many of us feel about this board. It's not that we don't appreciate how hurt and upset you parents with injured babies are, it's that seeing you all so upset by an injury that we live with every day, very successfully, makes us not want to read the posts here. It kind of seems to say that an if an unfixed bpi is somehow an awful thing, then my life must therefore be awful, when honestly it's not. This is a general message board for anyone affected by bpi to post, but it's almost all parents posting here. That's because so many of us actually don't relate at all to the tragedy you are feeling. I sympathise, I'm a parent myself and would probably feel exactly as you do, I just don't feel tragic myself! My arm isn't a tragedy and never has been, it's just a part of who I am. I wouldn't change one bit of my life, and if that means accepting the loss of my right arm, then that's my life.
I hope this thread doesn't erupt in a negative way, almost certainly your children will agree wholeheartedly with some of what Rachel is saying when they are grown up. I respect the right of parents to say the things they do about bpi, but I'm not the only one who feels it is hurtful to injured people to read it. People with bpi and parents of kids with bpi just don't see the injury the same a lot of the time, we may have to agree to differ.
Peace :0)
Jen NZ

[Carolyn J]

TO RACHEL,....The Adult OBPI Message Board welcomes all Venting also. If & when you would join us on the Adults With BPI Message Board, you will find that many of us had/have similar Opinions ad Atitudes and Feelings as yours at 1 time or another in our "Journey thru Life with BPI", a Lifetime of Issues, that still surprise me every day at age 67 when a new 1 jumps up.

TO JennyB in NZ,....Thanks for saying it better than I can. Oh, to be 20 yrs. younger and smarter...LOL.
Hugs all around,
Carolyn J
Adult LOBPI

[claudia]

Rachel:
I am the parent of a bpi child. And the perspective is COMPLETELY different. Juliana does not see herself as disabled, does what she wants, in her own way and moves through life. She is cute, funny, smart and loves to sing and read and play. In short, she is a typical 1st grader.

But perspective is the operative word here. As parents, we would do anything to keep our children from feeling pain. This is part of being a parent. I get the sense that you are not a parent yet. Before my kids go to sleep I ask them "how much does mommy love you?" and they all answer the same: "so much, very much and more than you'll ever know." It is a family thing that we do. My oldest (13 years old) asked me one day why it's more than they'll ever know. I told her that when she has kids, she'll understand.

Parents need support. We help each other learn to navigate the school systems, check to see that our ot or pt is on the ball, check our emotions... I am certain that YOUR PARENTS felt differently than you about your injury.

I don't pity my child and I don't pity myself. But I am a parent whose child was needlessly injured and I promised a little girl that I would help as many people as I could. I hope that in spreading awareness I have prevented an injury and I hope that in my own support group and in other people's support groups I have helped parents as well.

When I am down about Juliana's injury, I call Nancy. After she tells me about the 14,000 things she is doing that day, I feel like I should get off my tail!!

Don't be angry at us parents, we just want what every parent wants for their child--the best they can do.

claudia

[BIGJAVSMA]

I must reply again, just want to make sure I get my point across. I know that it could be worse, I know that I am lucky to have a healthy and happy boy. But when my son gets scared- I can't tell him that "momma won't let anyone hurt you". I have already let that happen. I don't treat Jody any different than I treat my other son. He does what he wants and is not delayed or held back by his injury. The ONLY thing that does not work is his arm. He does everything with other kids and is actually a bully on the playground and the only trait I think he got from BPI is his ferocious strength and appetite for life. I wish that the parents could post with out offending anyone, but I am sure it happens. Sometimes when I have a bad day I have to reword my posts just to be sure I don't offend anyone. I am sure I speak for quite a few parents when I say that I hope our kids grows big and strong and proud of himself for what he can do not sorry for himself for what he can't. Like we all say- every injury is different. I get offended when I hear parents complain about their child having only 50%+ function, I would love for my son to have even 20% function. but right now he doesn't and he might not ever, but that's cool. If this injury would have just happened- I wouldn't be angry about it.(my opinion) but I am angry because my doc promised that she would not let this happen and then I find out that Javier is not the first baby she hurt. I look to the older people with OBPI and TBPI for guidance to make sure Javier knows that he is alright either way. I hope I didn't offend anyone with my original reply, but I was thinking of the new parents who feel the way I did when I was sent home with a 2 day old with his arm tied to his chest and me not knowing why. We were all picked to take this "BPI journey" maybe not personally, but as a parent or grandparent. We should be able to vent and show support for eachother.

MArlyn

p.s for those of you who don;t know- Javier and Jody is the same boy.

[Kath]

Jenny is so right when she says we see this injury from a different point of view.
I never thought I was disabled nor did my family.
I understood the parents better when my daughter had such difficult deliveries and such large babies.
I thought my grandchild might have a bpi injury it was a horror for me.
I never thought of my life as horrible and I have accomplished all the things I wanted.
I knew for sure I did not want my children or grandchildren to be injured.

I was sure when I was young this injury did not bother my mother.
It was her job to exercise my arm make me move and help me to grow into a responsible person.
She did that and I felt my arm was not a big deal to her.
I realize now that some of the sadness and pain I noticed that my mother had was about me ....
She loved me and felt responsible for me and to fix anything that hurt me.
She could not make my arm all better and that probably made her sad.
This injury was as difficult for her as it may have been for me.
I am sure the guilt and pain she felt I could never understand.
Thank goodness none of my children were injured because it has been easier for me to be the injured person than the parent of an injured child.

This Message Board would have been a great place for her to come to for support and information.
Perhaps it could have helped her not to feel so guilty about something that was not her fault.
It is good to be able to vent to your peers when the pressure of OT/PT and surgery decisions are piling up...
We all need a place to go and share our feelings with people who understand.
I felt very sad when I first came to these message boards and read some of the things parents wrote.
But, eventually I began to understand that they have a much different feeling about this injury...


Kath (robpi/adult)

[BIGJAVSMA]

KAth- PERFECTLY PUT!!:)