United Brachial Plexus Network, Inc.

Wow, so much anger these days. Seems like so many of you forget why we're here. Unfortunately what brings us here is our childrens injuries, I doubt any of us would of ever know about BPI unless it happened to us, we really shouldnt be annoyed with those who know nothing about it. We need to work together to get the word out. These injuries aren't going to stop, there will always be big babies, small birth canals, bad decisions. There are some who live and breath this injury, why I don't know, but I for one don't. Anyone else who doesn't let this injury rule thier life??????? I have a beautiful daughter, who happens to have an injured arm...........life goes on. Lets not forget about the little boy who not only has a BPI injury but also leukemia.........who would trade places with his parents???????? Let's be thankful for the great children we've given life to. Who's thankful for them just as they are???????????

Dawn, yes there is a lot of anger when it involves a PREVENTABLE injury, called negligence, which is what happens with the majority of our kids. I don't let "this rule my life" but I feel God put it in my life for a reason. There is a lot of heartache with this injury. BUT, if I wasn't proactive, what would be the point? How would that benefit Logan? How would that benefit other innocent parents and children? Don't you think God is trying to tell US something?? Why did he pick US to be the mothers of a child with an obpi? I think like "what if Logan was given to some other parent who didn't do anything to treat the injury and her little arm didn't heal at all?", yes, thank GOD she WAS given to me, JUST THE WAY SHE IS. Yes, we do have so much to be thankful for. I AM thankful for this little love of my life, my life revolves around her, she is my joy. But to suggest I am not thankful for her just the way she is, is absurd.
PS- don't, I repeat, DON'T read into a tone, it is meant very kind. (((hugs)))
Sincerely, Nat

Hello,
I guess one thing that is strange about your post to me is that this IS a board to share our frustrations and challenges and ideas and experiences of dealing with a BPI....I mean if this board was about our happiness it would be called the happy homemakers board. I am pretty darn happy in my life even with 5 teenagers and 2 little ones that keep me running from morning until night,but, that's not what we're discussing here. I mean this board isn't my whole entire life....My son with an injury has been gone since Monday to the White Mountains with the boy scouts. I haven't even thought of HIS injury or his excercises.

One of my other son's little league team won the championship tonight and it has been a great night of celebrating....it's been a great time.....but we're not writing about those things....we're writing about injuries and how we deal with them. Does that make sense? I mean I'm sure all of us use this board for what it is then walk away from it....even my own husband doesn't understand my thoughts and feeling about these injuries...I can't really discuss it with anyone so I come here where I know others understand me and my son and maybe we have been through something that a newbie hasn't yet and we can help with it.
I hope you understand where I'm coming from because I do love and accept my son...if you knew him you'd love him too. He's an awesome person and sometimes his feelings about himself put a shadow over who he is....That's something he deals with everyday and hopefully I can help him through these dadgum teenage years in one piece!!!
Hope you're not mad about my opinion!!! Love ya guys!!!
T.

Thanks Dawn for your viewpoint that everyone with a brachial plexus injury should just be happy and go on in life!

I normally do not respond to these kind of messages yet tonight I felt that I should. I'm an adult with erbs palsy. If you were to meet me on the street without knowing me, you'd probably never recognize that I suffer from BP. Back pain, wrist pain, congenital heart trouble, and an ever growing list of ailments are likely linked to my preventable birth injury.

When your daughter starts to have pain, will you want her to utilize doctors that might assist her needs? This website might help her (e.g., surgery options, pain management, or just a friend with a similar problem).

Can you say that your daughter will be happy after adolecence (pain and symptom free)? While I live with my injury and have a measure of happiness at times, life would be surely be happier with two full arms.

Thanks Dawn for your viewpoint that everyone with a brachial plexus injury should just be happy and go on in life!

I normally do not respond to these kind of messages yet tonight I felt that I should. I'm an adult with erbs palsy. If you were to meet me on the street without knowing me, you'd probably never recognize that I suffer from BP. Back pain, wrist pain, congenital heart trouble, and an ever growing list of ailments are likely linked to my preventable birth injury.

When your daughter starts to have pain, will you want her to utilize doctors that might assist her needs? This website might help her (e.g., surgery options, pain management, or just a friend with a similar problem).

Can you say that your daughter will be happy after adolecence (pain and symptom free)? While I live with my injury and have a measure of happiness at times, life would be surely be happier with two full arms.

I am a VERY happy person. I can't say that I was always a happy person but that all changed a few years ago when I met my husband. We got married a year later and ten 1/2 months later had a beautiful baby girl. I do however live and breath this injury. In my heart and hopfully so my daughter (now 2) will not have to. I am very thankful to God for creating this perfect person. God created perfection! A doctor messed with God's masterpiece and I'm sure he (or she) is just as pissed as I am.

I don't try to trade places with the parents of dying children, because I can't imagine. This is what we got stuck with and my daughter deserves my compassion not comparisons. I am happy that she can count her toes, all ten now, but I hate that she can't count her fingers. I love that she runs to me everytime she sees me but I hate that she usally falls on the way.
We come to the board to share our woes, but we are oh so thankful for those little toes. Keep the faith we are all good people looking for a shoulder to lean on.

Without a doubt, I live and breathe this injury. My life has changed so drastically - I have changed so drastically. I am no longer the person I used to be...and I will never be that person again. But there is work to be done out there and it's really important work. Our kids need us. This community needs us.

Of course I know that it could have been worse - but I can't go there because my reality IS my reality. I have no clue what it's like for a mom whose child has a more debilatating prognosis although my heart breaks for her as well.

Can't avoid the anger. Don't want to avoid the anger - it's part of the process - it's teaching me a lot about who I am. I have reason to be angry, somebody hurt my kid...and in a big way, too. It wasn't just a stupid little mistake - it was not knowing how to do it correctly every single step of the way and lying to me pretending that they did. You bet I'm angry.

My daughter is doing great - she's making headway - finally moving forward in big ways and I am SO excited for her and yet I can't allow myself to really revel in her success because I'm so worried that she will dislocate again soon. - we've been warned MANY times. So camp starts next week and every day I feel another layer of angst. I still want to embroider something on her shirt on that side - I'm really scared. I don't want other people to be scared but yet I do. I don't want them dislocating her. There are so many young counselors at camp - even though I've typed up a 3 page informational sheet on bpi and Maia- will they remember? Will they know who she is? So, now I am reconsidering embroidering a big red heart on her left arm sleeve.

Am I thankful? Absolutely. Am I happy? Unbelievably happy. Am I sad? You bet.

I'm not the only one though - our lives shift so much because of this injury and for those of us with young children who are running the surgery / rehab track - well let me tell you - this life is HARD!

Maybe 5 years from now we'll have experienced a bit of normalcy again when you don't have to think about therapy so much or estim nightly... maybe then I'll be in a different space and life will be little less heavy. But for now - can't go there yet. Sorry.

I would consider myself to be a very happy person. My life is satisfying and full. Yet I live and breathe this injury -- it is part of me -- it is part of who I am -- it is NORMAL for me.

Perhaps what we see more on this message board is the outpourings of our struggles and pains more than our successes and achievements. That is what happens with a support system -- this is where we go when we need help or a question answered.

But as I scanned through the messages, I also see reflections of rejoicing.

Nancy

This is an interesting post. I do understand where Dawn is coming from, if as an outsider, you came across these boards by accident, you might be forgiven for thinking that all parents of children with BPI(of whatever age!) are the angriest people in the universe.
However, I do think that there is also some truth in the fact that these boards were set up for people to share their experiences,both good and bad and that it is often when we hit another problem with our children, whether it be more surgery, a bad reaction from someone, something our child can't manage on their own, that we feel the need to vent our frustrations.
In my experience with the Group in the UK, you often only hear from families when a problem arises and I think that's very natural, we all need someones help during the bad times.
I know that if I don't hear from a family for a little while, that things are going well and running smoothly for the family and more importantly, the child concerned.
It is very hard, to come to a stage in your life when you don't feel anger towards the people resonsible for your child's injury, but it can be achieved. As a parent I do feel that some of the feelings of anger I had in the past have been resolved, but my son is almost 11 years old now, so it does take time.
Of course, when something happens to interfere with his day to day life, I do get angry and I do fight for his rights, but as he gets older I have come to terms with the fact that he is a normal boy who happens to have this injury. I must also mention that I have another child who has An Autistic Spectrum Disorder, so perhaps my entire focus hasn't been on my son with obpi and maybe that has helped, of course, I don't know that for certain, as I can only tell you about experience as it is and not as I would have wanted it to be!
I am involved heavilly with the group in the UK and certainly my life does revolve around BP injuries to a large extent, but it's certainly not the only aspect of my life, and I am sure that as many of the children whose parents post messages on these boards grow older,
their parents will find that they no longer need as much reassurance and support as they did when their child was younger, there is no greater reassurance than seeing your child blossom and achieve things in their own way.
We all deal with this injury in our own way, there isn't a right or wrong way to deal with it -only your own way.
Respectfully
Karen

I am happy! My child is happy and so is my family. It is all in the way you view things. I do get upset by all of the anger here. That doesn't mean that I do not understand it, but I guess it's just that I don't think it does anybody any good to let anger motivate them. What a waste it is to spend your life being angry. I do NOT feel that my child's injury is about me at all. I feel that God's plan is about my daughter and who she will be and how she will influence others. I do not think that my daughter would benefit from my anger about what happened to her. I do not want her to be angry that she is not perfect. What good would that do her? She would benefit far more from my understanding and acceptance of her so that she can accept herself and reach her goals in life. She is the one who is injured - not me - so I focus on what would do her the most good - and anger will not help her. Maybe her place in life is to show others that you don't have to look or be perfect to be happy. Maybe she was injured because God knew she was a strong willed, determined, positive child who could teach all of us to get over ourselves and appreciate eachother. Maybe her place in life is to show all of us how to enjoy our lives with what we are given and not to waste it wanting what we don't have. Our family has fun together and that helps my child - teaching her how to enjoy life.

We went blueberry picking yesterday and out of 13 kids and 6 adults my child was "queen blueberry picker" - picked more than any of us - then we all went swimming. Some of the other kids were complaining that they were too hot or bored picking berries. My child picked berries and ate and picked more and was singing to herself while she picked - she is a happy kid. That is our therapy and our way of life - having fun together. No one there noticed/mentioned her arm and the way she picked. They did notice how their kids were complaining and sitting in the shade and my child was still picking away. Thanks for asking if I'm happy because it helped me think about all of the reasons I have to be happy and there are many.
Christy