United Brachial Plexus Network, Inc.

Mary feel free to ask questions here any time!

I guess to answer your question I can look at it two ways.
One, I can look back at the resources my family had and say that I dont think there way any thing that my parents could have done differently. Except that I wish my dad could accept that I have an injury but it in no way limits my abilities! I can do any thing I put my mind to. I also with that they were open in communication about my injury, I sometimes think that my sibs feel like I am faking to get out of doing something.

Open communication is a must!

or Two I could look at it in a way that would not refleft my families situation. In that case I could say I wish I had more therapy...
But that is not my case. I would not want my parents to sacrifice what my sibling and I now have so that I could have a possibility at better recovery. In my families situation I know my parents did every thing they could do for me while raising two other children too.

I am thankful for every thing that my parents have done for me! I have the abilities I have because of every thing that my family went through to get me here today.

I would say if you have other children, treat your child that has the bpi the same way. Encourage them to try what ever they want to! We all run the same risk for injury so dont hold them back. I play softball and have since third grade, I am now a sophmore in college and still play although not at a college level. I am pretty good at it too. Help your child have the mind set that they can do any thing thye put their mind to, it just may be slightly different than the "norm" whatever that is.

Amy 19 years old ROBPI from MN

I wish that I had continued PT beyond the age of 6. My injury I would consider mild to moderate. I have very functional use of my arm and hand. However, I never understood until recently that the muscles allowing me to move my arm so well are not necessarily the ones that should be doing the job. I wish that continuing into my teens my mom had me in and out of PT for stengthening and stretching(I am 26)
Becky

Mary,

I wish my parents had been willing to tell me more about my birth, infancy and early childhood. "Back in the day" people didn't talk about things that were painful to them. That's how my parents were raised. Consequently, I also know little about my grandparents, or about my parents' childhoods.

I wish that my parents had explained better about the importance of being able to use both hands and arms when I would be an adult, or made therapy "play," so that I would have done it. I was a child, with a child's understanding. I remember thinking, "If I can do what I need to do with one hand, why should I have to struggle to do it with two hands?" If I had known, and understood, then, what I know now, I think that I would have struggled to use both hands then, so that I would be able to use both hands now.

After I graduated from high school, my mother told me that she had spoken with each of my gym teachers by phone, explaining about my arm. At the time it seemed to me that she was bragging about what a good mother she had been, at the cost of any self-confidence that I had had. I had thought that I had passed those classes by my own ability to do what I could do, my willingness to try, and my knowledge of the rules of the games. We had written tests on the rules of the sports that we played in class. When my mother told me of her phone calls, my balloon burst. Did I pass on my own, or did I only pass because of those phone calls? I wish that my mother had told me about those calls sooner, so that I could have spoken with my teachers about my grades for those gym classes.

I wish that my father had not given up on doing exercises with me. I don't know what kind of exercises we did. I don't remember them. He told me that he stopped doing them with me when I stiffened up and started "fighting" him. I know that he meant that my arm stiffened up as if I was fighting against doing the exercises. Perhaps I did stiffen up intentionally, but I was a very young child. How could it have been so hard for an adult male to handle this, that he just gave up?


Gayle,

Of course our parents didn't have the resources that parents of BPI children have today. There was no internet. There was little information available for laymen, and I don't think my parents would have availed themselves of it anyway. I was the only BPI person I knew until July 2005, when I was already 56 years old. By that time both my parents were gone. I'm sure that they never knew anyone else with an arm like mine, or they would have told me so. They were isolated, doing the best they could with whatever knowledge they had. Here is a perfect example of what I'm saying:

When I was 17, I was told that my injury had a name - Erb's Palsy. I was thrilled to know that it had a name. That meant that someone, somewhere on earth, at some point in time, had had an arm like mine - an injury like mine. I brought this information home to my mother. She said angrily, "You don't have palsy! There's nothing wrong with your brain!" I don't think she ever looked the word up in the dictionary. Why would she? She thought that she knew what it meant. She did the best she could, with what she had.

I haven't read anything here that suggests that our parents didn't do the best they could with what they had. Mary's question was, "If you could think of one thing that you (emphasis mine) wish your parents had done differently ..., what would it be?" We are each answering that question to the best of our ability. We are answering from our own point of view, not that of our parents', because that is what Mary asked for.

We adult OBPIs know that because of the internet, UBPN and other organizations like it, and advancements in the medical fields, parents today have so much more available to them than our parents had.

Well, I guess I've said my piece, and my peace, at least for now.

Joanie

Joanie, I was pointing out to Mary that I feel the lack of internet and resourses changed the way the "ADULTS" parents treated the injury. Back 15 years ago when my daughter was born, she suffered shoulder dystocia, they pinned her arm to her sleeve. Seven Years later along can Brandon....they tried the same thing, but the internet helped me figure out what was right. These sure have envolved over the years....and thank goodness for that ! GAYLE

MaryDroz, thank you for posting this question. I have learned a lot from it. And you can tell that all the answers came directly from the heart.

I very much appreciate all of your very honest and candid replies.
You will never know how much this might help parents of small children as we sort through the many decisions we have to make along the way.
God bless you all.

I beleive my parents did all they could for me. My dad even built me monkey bars. They let me try any sport that I wanted, even thou I did not do well at some. The one thing I wish that my Mom did not do is blame herself for this injury. I did not find out until I was 40 that she thought it was her fault. That hurt alot knowing that she lived with this pain all those years. Be informative to your kids about the injury(this type of info,internet, was not available to my Mom) and LET THEM BE KIDS! We know our limits. Judy

Judy, you put that perfectly! I also wish that my mom would not blame herself. After 19 and a half years she is still blaming herself. We know that this is in no way the parents fault. So Please Please Please do not blame your self for this! Its NOT your fault!
Amy 19 ROBPI from MN

OBPI Mom's are very much affected by this injury and the feelings of anguish don't go away easily if ever. My Mother, who is almost 98, gets tears in her eyes when we speak of my injury and the years of therapy we went through together.

John P.


Message was edited by: jep98056

Same here. My mom still blames herself too. Sad, I find, as it had nothing to do with anything she did. It was an accident plain and simple (in my case, they pulled to save my life). Yes, maybe they could've been more careful, but again, it has nothing to do with my mom. She knows it but still blames herself.
Marieke (LOBPI age 30)