United Brachial Plexus Network, Inc.

Dawn

I am a happy person. I have a wonderful husband, three great kids and 4 grandchildren. I am truly blessed and I know it...

But I also have obpi and I can never forget that. I have always been challenged to do the ordinary and had to learn to be creative. Did I ever focus on my arm NO not until I started to suffer from overuse... I learned from the parents on this board who share so much how to take better care of my self. I don't feel the negative stuff or anger because I just never have.

There are days when I get frustrated and it is related to my arm... but it passes very quickly and besides when our arms are injured we are given an extra dose of HUMOR... so we can laugh at our selves and move on...

I think parents share their anger here in a safe place to prevent their children from feeling the parental frustrations... I noticed that parents are more frustrated when they are facing surgery decisions, in the middle of lawsuits and when they loose their lawsuits,because they have no validation that the doctors made a mistake.
I also think that parents with older children have had the great healer TIME and as they see their child grow and get strong they feel less angry and less frustrated. They begin to EXHALE and see that we do make it!

I get up in the morning like Joy I am happy to be here.... I dust off my wits and rush into my day... Some days are great, some days I wish I had stayed in bed or lived in a cave... but each day is a gift I smile most of the time ...


Kath

Yes I am very Happy Dawn! Thank you for asking.

I would like to be completely honest right now with all of you. When Michael was born I lived, ate, breathed his injury. I was angry all of the time and especially when I saw him struggle to do the most simplest things. When he fell and ate the dirt and spit the grass out from his mouth I cried inside and my anger grew, but he would just get right back up again and run like hell all over again. Then I had hope from surgery. When I heard he didn't need it and that all of therapy was working fine I have to confess, I was disapointed. Looking back now I think I was hoping the Dr. would be able to take away my responsability and make the problem go away. How selfish of me. I was just so tired of being so angry all of time and wanted so much to have a normal life with a normal child. I know this sounds cruel. I guess I had some accepting to do.

I don't know what it would take for the rest of you who live this injury the way I did to heal in your own way, maybe your just not ready, it's not for me to say. What I do know is that it took something like leukemia to open my eyes. His oncologist said it best. "Forget the arm, we have to save his life!" Even at that moment I was still concerned for his arm! That's how bad I lived it and that's how angry I was.

Now I know I have found a happy medium. When Michael had a phsycological evaluation they asked him for three wishes and if he could change something about himself what would it be? Here is what he said. 1) A new bike.2) a loose tooth. 3)to wish on a star. As far as what he would change? He wanted a green nose because he thought that would be funny.

No mention of his arm or the cancer.

I hope everyone finds peace in their own time.

Patty

Thanks Patty!!!
I sure think you are an awesome person and so is Michael!!!
Love to you.
T.

Rich! happy birthday to your daughter!

Yes I remember those days...and do you remember when I used to spout off about how I thought e-stim was so detrimental etc because of my shiatsu training and how meridians work? Yea... wasn't that something? Now look at me doing estim everynight! LOL We learn - we mature - we learn how to communicate better - we lose it - we come back to it. It's all part of the concept.

5 years from now we'll look back again and laugh at ourselves

have a great weekend,
francine

wellll, not sure I should reply since I dooo think about BPI stuff alot,
one of my fav quotes used to be
happy is the hardest discipline
(from the peaceful warrior)

does that count?

I've always felt such guilt over being angry because my Erb's has caused me to limit some of the things I have wanted to do in life. Things like being the last one chosen for games like volleyball, feeling embarrased at having to do jumping jacks in gym class, a rejection letter from the air force-I almost made it through the physical when,at the last moment the Dr. asked me yo put both hands above my head,the number of people who thought I uesd my arm to get out of doing something,when in truth, I was afraid of being laughed at. I could go on and on.
My point is-- somehow I think if I could have gotten rid of the anger it would have made a difference. Was it the Erb's or the anger that shaped my life. What would I do different if I could do it over without anger, fear or resentment?
A lot of you parents are really working hard to make sure your childs adjustment is as smooth as possible. They understand that it's ok to be a little different, different doesn't mean lazy or bad.
Pat yourselves on the back. Read that poem from a few posts earlier, just don't get too angry. Even if it isn't directed at your child, it can cause he or she to feel guilty.I know this is a little disjointed. Your posts caused so many raw emotions in me, I found it hard to connect everything smoothly.
You all do such a great job and I can feel the love you have for your child . I can also feel your frustration. You have a lot on your plates.
This isn't meant to offend anyone. Just a viewpoint from an old 49 year old Erbie. Pat

Wow.......Gotta say, I am happy but I have to agree sometimes when I think about the birth of Kyle and the way things went and the fact that his big brother was born only 15 months earlier with some of the same troubles, suffered a mild shoulder injury, and they NEVER told us......and not to mention the SAME doctor deliver both of them...yes, I get angry,
but ya know what? Ky is 7 now, 7 and so handsome and he has such a determined spirit. I loved what one person had already said about "they wonder why did God pick us to be the parent of a kid with BPI" I think it is a special gift that we were all given. Although at times we don't feel like it was a gift. But all the work we can do, to let others know.
Ky has a mild RBPI. By the time he was 5 therapy was a normal part of life. I don't even think he knew why, one day he screamed for me from the living room...I ran in, he looked at me with tears in his eyes, he held out two arms and said "MOM MY ARM IS CROOKED". At that point all I could tell him was how God had made his special. We never really thought about it but Ky thought he was just like everyone else, even though he had been in therapy, he didn't know his arm was crooked. I cried, held him tried to explain, but how do you explain that?
Again, I must say that God gave us our special BPI Child for a reason, maybe to get the news out, maybe to make us appreciate all the other healthy things about him.
I am so scared about the pain he might experience. That to me is a horrible thought, but ya know...watching him play baseball tonight, I thought his arm was sticking out like a sore thumb, I felt sick inside. The lady next to me leaned over and said "wow, I don't think I've seen a more aggressive little player". While I was looking at his arm and feeling sad, she was looking at him and didn't even notice! It really made me smile inside!
Happy, yes that Kyle is has healthy as he is....but occasionally yes we all get sad over over little ones have an injury that could have been prevented by information that just doesn't seem to be out there...so I say we ALL need to make use of our feelings and testimonies and spread the word about BPI and its effects!
Sorry for the long post!
Tami

Hey don't get me wrong when I say this, I am extremely thankful for my beautiful daughter, wouldn't change her for any other daughter in the whole world. I know very little about BPI, but what I do know is that it was preventable, I told the Dr. that if I had not had her by 3:30-4:00am that there was a reason she was not coming and explained my feelings, the Dr. ignored what I said and wanted to do it her way, well her way injured my child, that is who I am angry with not anyone else, but that Dr., for not listening to what I had to say, wouldn't you be angry? I am probably way off base but that is how I feel, my anger is directed at the Dr. who would not listen. Sorry, just having an extremely bad day today, had to vent. Thank You, Lesley Jane' Mom (Danielle)

Thanks everyone for replying, my only intention in asking this question was to see some positive remarks instead of all the bickering that has been going on lately. Of course this should be a safe place to come to vent, and share. But it should also be a safe place for everyone to have an opinion without being blasted for it, and my opinion is to be happy (said with a smile). Hope you all have a great day, and enjoy your kids as they are . Take Care.............Dawn