United Brachial Plexus Network, Inc.

I find that it's a very hard position to be put in... what IS the right thing to answer?

I don't want to harp on the negativity yet I want them to know how serious it really is and how much is affected by it.

I won't say anything negative if Maia is standing right there - I'll just say, "Yes - Maia is doing GREAT!!"

But otherwise, I tell them that it's most definitely a lifetime issue with future surgeries necessary.

Sometimes they shut up and don't say anything else and sometimes they want to know more and then I go into whatever direction they want to hear about.

You are NOT out of line! Especially with a friend - your friend needs to know!

I hope I don't sound too rough around the edges. Maia had two birthday parties today so all day we've encountered stares, awful comments and all of that cuz of the capsulodesis splint, so don't take my attitude personally if you sense it..... ggrrrrr, if this injury was out in the open, the way it should be, then this would not be happening. People need to be educated!!! aarrrgh>

-francine

No way were you out of line, Jennifer. You said just what you should have. Your friends and family, especially, need to know exactally what you are dealing with. Good for you for being as frank as you were!

I think you did a wonderful job Jennifer! People need to know especially friends. I know I get tired of hearing how well I am doing. Yeah, I function but I most certainly do not "function" like I use to before the accident. I never will. While you don't want to dwell on the things that are wrong or you can't do, I find it is still important for others to know they are there.

Do you feel you hurt a friendship by being direct? If so, is she the type of friend you can approach and let her know it was not your intent to make her feel bad. Explain your frustration to her. I don't think you did anything wrong, Jennifer. You told her the reality of your daughters life. Regardless of how she might appear.

No - you were not out of line (as long as your daughter didn't mind showing your friend). Showing people sometimes is the only way to help them understand! They have no idea until they SEE it. I know I've wanted to scream so many times, "Sure my daughter does fine when she's sitting with friends playing barbies, but you did not see her this morning when she was holding her milk with one hand and trying to wipe syrup off of her mouth with her other hand, or how she got herself tangled up in her jacket again just an hour ago because she forgot to put her left arm in first, or how many tries it took me to cuff up her one sleeve to make it appear to be cuffed the same amount of times as her other sleeve....... Friends have said, "you can't even tell she has anything wrong with her arm" and there have been times when that was exactly what I wanted to hear though. It was almost like reinforcing that all of our hard work was paying off. Other times the same comment would tick me off. Over Christmas I had a friend who hadn't seen us since last Christmas say, "Wow!! You can definately tell which of her arms is injured now - it used to not be as noticeable". I didn't know what to say to that one! I'm to the point now that I do not like to hear any comments about her arm, I'd prefer to be the one to bring up the subject. It gets hard when friends do mean well but what they say just comes out wrong. My biggest gripe right now are friends that do not seem to understand our lawsuit. That's a whole new vent!! Anyway - you were not out of line and probably helped your relationship with your friend. It's easier when friends know where the other person is coming from to better understand eachother.

I think sometimes people are trying to just give encouragement by saying how well the child looks...I guess sometimes we are so fed up with this injury that we may take a good intention wrong....I know my son will never have a "normal" arm or have it completely healed and so does everyone who interacts with us on a regular basis....I think sometimes they will just try to look for the silver lining to try to help us to feel better.
The problem is that we always will have this huge nag in the back of our minds that says maybe if I do more and more for my child then things will improve....The nagging never stops and then when someone says something it's like spinging a tightly wound guitar string....I have felt like freaking out on people who just say the stupidest things.
I guess it's one of the things that goes along with this injury. We're all human...including the people who may say the wrong things....try to forgive and go on but realize you may never get over feeling like this....well...I guess never is a long time....never say never. Well, I think I'm rambling now. I just wanted you to know I feel the same way as you all do.
Love to you all,
T.

No, I do not think that you were out of line, however, I am with Francine. I never say anything negative about my son's arm, around my son. My son has two good arms, only that one he has to try extra hard to get it to work right. He is 3 1/2 and knows that the arm needs special attention. He has told me that his arm, just doesn't work like he wants and we find a way to correct it. I feel very fortunate that my son has the function that he does and lets not forget, the surgery is not made to correct the problem 100%, it is done to improve everyday function.