United Brachial Plexus Network, Inc.

Rachel,

You also need to realize that there are many parents posting to this list, all at different stages of dealing with this injury and their lives. At any given time, you will find joy and heartache, optimism and despair. Individuals do "get over it" to differing extents, and move through different stages of grief.

But since there are new parents coming in all the time, there will always be some participating from the more raw stages of grief, some still struggling with the risks vs benefits of "letting it be" or trying to make it better. The community as a whole is never going to "move on", until children are no longer injured and parents no longer have to struggle through the tremendously difficult early stages of coping with this injury.

We all want families to be happy and parents to not stress and worry over their kids. But that isn't a place where your parents started out, anymore than many of the other parents here. Acceptance and peace is a place you come to after a period of time. And depending on your child and the options you have for trying to improve their situation, a place that you must try to come back to again and again. Your own parents pursued therapy for 24 months, and struggled with whether or not they were doing the right thing! I'm sure you don't remember those times too well And they too were put in the difficult position to decide to go against one doctors recommendation to immobilize your arm. Dealing with conflicting medical advice is one of the most difficult things about parenting a child with this injury, and the main reason why so many parents seek the support of this group.

For you and all those who are in a different "place" about this injury than those you are interacting with: try to be understanding and accept that each family has it's own journey, and needs the space and the support to travel it.

Kate

i totally agree with kate, i also hope that after reading you & your family continues to come here and share you life. my reason for being soooo emotional is b/c we have too many options and honestly i have to make a decision that i never in my wildest dream thought i would have to make. i am curious how long bpi specialists have been around? thanks was surgery an option 20 years ago????

Wow! Every single person has added so many feelings - so much truth!! I feel like I will repeat what everyone else has said - but here I go....

My daughter is 14, and not a day goes by that I don't come across something that I'm doing and I wonder how she'll be able to do that when she is my age. I am scared for her. I have NEVER felt sorry for her though and she is such an extremely strong kid that I know in my heart that her life will be complete. I hung picures the other day, then dusted the curtains, tried to hang a shelf last week, couldn't put stuff on the top shelf casserole dishes, unless I had it balanced with both arms - and so on - every day I worry about how she will do things that already are so hard for me to do with two functioning arms. She is constantly in my mind when I find things difficult. I am extemely proud of my daughter - she is way stronger than I am and I know that she will figure her own way out in life - but as her MOM I can't help but worry for her. There is surely not any 'sympathy', 'poor us' 'my poor kid' - that has NEVER been the case at all - but to come to this forum here and have others share my same concerns helps me because I do not feel so alone any more. It's aplace that I feel free to share those concerns - although my daughter doens't have them - I DO!!!

Last week in school my daughter (BEEP, BEEP!! - ran a 6:25 mile - (top 3 on her track team....blew the kids away in in a divisional meet) BEEP one more time!:) YIPEE! came home and said that a girl told her that she was surprised that Britt could run so fast with "an arm like THAT", and Brittney held back on the response that she would have said if the kid wouldn't have been so happy for her. Life is NOT OVER with an arm injury - it goes on and you become stronger - stronger than most! The understanding here on these boards is what I so much appreciate.
It sounds like you are a fighter too and you have done things that most can't do if they weren't injured! I bet you can do things I can't do and make it look easy!!I appreciate your honesty and completely understand where you are coming from because I feel the same way at times too when I read some of these posts - like -get over it and move on - life is GOOD!!!!!!! But there are times when we all need eachother to understand.
Christy

Nerve grafting surgery for bpi was available in London at least 26 years ago (that's the earliest I know of a friend having it, it worked, too).Dr Kline was also doing it in the USA, don't know how many others were. I was just not interested in the surgery when I got my bpi, for me it was either an arm as good as new or don't bother! That's just me tho, I understand others may feel differently. I have a lot of bpi buddies who feel the same as I do, it's not unusual. It certainly isn't wrong to not want treatment/surgery, any more than it's wrong to pursue it. For me it felt like I was choosing life, and that's exactly what I did. Maybe if my injury had been milder I would have chosen a different route, it wasn't mild so I didn't. I would not have chosen any course of action that involved long periods off work, lots of therapy or multiple surgeries, I had too much to do in my life, with or without an arm it had to continue!

Rachel didn't answer why she came here in the first place if she has no issues with her bpi. I know that for me, it was the curiosity of putting the words 'brachial plexus injury' into a search engine out of curiosity, I wondered if there was anyone else out there. Boy was I surprised! I 'met' others like me, in many cases much more newly injured than me, and people who were still in enormous physical and mental anguish, and I stuck around to help-I had no experience of surgery, but I did have experience of working, parenting and living with one arm, and experience of getting off hardcore painkillers and learning to ride the pain, which is probably always going to be part of who I am.

Coping well with such a devastating injury isn't being in denial, we must allow ourselves and others to grieve if we need to, we must also allow ourselves and others to get over it. There is no right and wrong, there's no best way. There is only what's right for us. It is much harder on parents to make these decision for their child than it was for me to make the decisions for myself.
Take care all, hope the spring is just gorgeous, autumn is pretty glorious here right now!
Jen NZ

Jenny,

You are not kidding about it being easier to make decisions for yourself than for your child!!!

I just had a fairly controversial knee surgery (yet another decision where the majority say "wait and see", the surgery "isn't 100%", most "do without"). Even though it was a tough decision to make (and sure enough, I *did* research the hell out of it and even looked up licenses and lawsuit records for the two doctors I was considering!!), it was NOTHING like when I had to make a surgical decision for our child, who couldn't contribute to the discussion, and I just had to guess what was the right thing for him and hope that I didn't screw up his life. When it's your life, it's really no big deal. No one else is going to blame you or suffer if you make the wrong decision.

Kate

I am a 35 year old women and I have Erb's Palsy in my right arm since birth. I too am proud of who I am and do not let a day go by regretting my injury-it has made me a stronger person.

My parents and family never blamed anyone and did not get angry. They treated me like a normal kid. I played sports (and still do) and was a ballet dancer for 10 years. My mom did OT and PT when I was younger so that I could use my arm as best as I could. I found that through the years that I primarily used my right arm for everything, i.e. I golf right-handed, when I was a waitress-I carried the tray in my right arm. I write left-handed but then I taught myself to write right-handed, I wanted to make full use of my hand and arm. I never felt different than the other kids. They respected me more because the gym teachers would always say "LeAnne, you can't do that because of your arm..." and off I went and hit a homerun or do the most push-ups! I did get injured more than most kids but I pulled myself together and went back to playing sports. I was not competive because I was compensating, I was competitive when I was born. My mom said that my injury was due to me getting stuck in the birth canal. I fought hard to get out and was an angry, screaming baby because I wanted out! They had to do an emergency c-section and the doctors thought I had more damage because of the lack of oxygen but it ended up only being an injury from the shoulder down to finger tips. My parents were just so thankful that I was a girl and that I was a healthy baby-they already had 5 boys.

I had a friend, who I met through a PT session who had the same birth defect as myself and her parents were so angry and blaming everyone and everything about her injury, that she felt worthless. At the young of 14 she took her own life and in her last letter, she wrote that if her parents could not love her for who she is and was angry because of her birth defect, she could not love herself and felt that she did not belong in this world and she did not want her parents to be angry anymore.

It was the saddest day when I went to her funeral because her parents were blaming the injury for her death that she could not get past it. But I knew that she just wanted to be treated like a normal kid and not the "handicapped" child that her parents always called her.

I understand that parents are angry about these injuries and I get that. There was a point in my teenage years where I was angry too but being a girl going through that teenage thing is not the easiest to begin with. I was angry that no boy would ask me out on a date because of my arm and my dad pointed out that if a boy did not like me because of my arm that he was not a boy to like in the first place. And that I would have lots and lots of dates. And boy did my dad regret saying that I ended up with a lot of boyfriends and he had to endure the heartaches and angts of those breakups.

I did have 2 surgeries that were MY choice when I was a teenager. I had a tendon transfer to straighten my wrist-my basketball game improved but because of the surgery I get numbness now due to the immobility of my wrist. And I also had my thumb fused together-it used to sit in the palm of my hand and now it sticks out and I keep breaking it. I plan on having surgery later this year to unfuse it so I stop breaking it. I wish I never had the surgeries because yes in the short term it did help but in the long term I am having problems.

So parents, treat your kids normal and they will lead normal lives with their injuries and they will find out what best works for them. They know their bodies, they know their limitations and they know themselves better than you will ever know them. Guide them, be there for them, support them, cry with them when they have pain, cry in private because of their injury. But do not make them feel different than eveyone else because they sense that and I believe that is more damaging than being teased by a kid.

LeAnne:
What a well phrased post you have given us. I am so sorry that your friend committed suicide, though I am want to believe that more was to it than just a bpi.

I do believe that there are many parents out there who "disable" their children. I am not one of them. We have done 3 surgeries so far, and yes, are investigating 2 others. My daughter, who is 6+, is very verbal and makes clear what she wants. From about 4 years old on I have encouraged her to tell the doctors what SHE wants her arm to do that we can't get it to. If they can't help, then it is what it is.

She swims better than almost all of her peers. She played basketball, but didn't love it. Next year she will try softball. I have 2 children who dive competitively, and the coach will take her out privately to see if she can generate the power necessary to dive (she can move her shoulder, but does not really have strength). The only reason we would keep her out is for safety. She rides horses and will attend a horseback riding camp this summer.

We have never told her that she was not capable, but instead that she had to find her own, unique way of doing things. And she has. She is the youngest of 4 kids and her siblings love to help her doing things "differently." I am practically brought to tears to hear one of her older sibs say "you are working so hard to do that--let's find a better way." And off they go to work on different ways of doing things. They want me to pierce her ears and so have been "practicing" the earrings!!

Have I been angry. You bet. Do I still get angry. Yes. Do I share that anger with Juliana? No. It was not her fault and it was not my fault. It was the doctor's fault. She knows I would not want her any other way. Maybe it is easier to be "different" in a family of sibs who have "issues" of their own. And they do!! (the list in our family is endless!!!)

All of my kids know that I would go to the ends of the earth for them. And I do.

The issues of letting go, after years of protection and therapy are tough ones. ALL PARENTS struggle with letting go, and bpi just amplifies those issues.

I am so glad for your positive relationship with your parents. And for your wonderful self-esteem. I think you would have had that with or without a bpi.

I have gone into Juliana's classroom to talk about her arm a number of times. I always ask each child, "what is special about you?" Juliana often answers "my left arm." I always tell her that I think it is her beautiful green eyes and her ready smile. That is how I want her to see herself. Yes, her arm will set her apart-it already does. But she should look in the mirror and see a beautiful, intelligent, funny girl. Not the arm. Six years later, that is what I see.

claudia

Jenny B,

I came to this site through watching the Dr. Phil show. I was OUTRAGED at the show about brachial plexus because it showed the mother dwelling over the injury and therefore hurting her child. I sent Dr. Phil a message about it - and to do that, I had to go to his site. I never even DREAMED that there would be a need for a "support group" for this... and when I DID see it, it made me mad.

That's what brought me here. Just wanted to clarify.

Rachel

Claudia,

Very well put. Your little girl sounds a lot like me when I was her age. I loved to swim... I tried volleyball instead of basketball, but its along the same lines. She sounds confident and comfortable in her own skin and that is so important. Thank you for your responses!

Rachel

I AM NOT DWELING ON THIS INJURY I COME HERE TO SEE WHAT OPTIONS ARE OUT FOR MY SON!!!! WHICH DOCTOR IS BEST? WHO IS HAVING BOTOX???? CAN IT HARM MY SON???? ANY PROBLEMS FROM IT???? THIS BOARD HAS HELPED ME MAKE DECISIONS!!!!!! DO I TREAT MY CHILD DIFFERENT ABSOLUTLY NOT!!!!!! MY CHILD WAS SWIMMING BETTER THAN HIS TWO YEAR OLDER SIBLING!!!!! THIS BOARD HELPS PEOPLE MAKE DECISION REGARDING, SURGERY, THEARPY, TAPING, I GAVE OUR THEARPIST THE SITE & THE LATEST OUTREACH/ WHICH SHE READ & USES TO HELP HER IN HELPING MY SON!!! THIS SITE HAS DONE SO MUCH FOR MY FAMILY!!!! UBPN..... FOR ME I COME TO LEARN, SOMETIMES VENT..... GET QUESTIONS ANSWERED....MOST IMPORTANT I HAVE MET SOME REALLY AWESOME PEOPLE HERE .....NEEDING SURGERY IS A VERY SERIOUS THING, HAVING PEOPLE WHO HAVE ALREADY EXPERIENCED IT, HAVNG THEIR ADVISE IS PRICELESS!!!!!