United Brachial Plexus Network, Inc.

Hi! I just really didn't realize how much people would stare at my daughter while she is in her immoblizer(Had primary last week). I was literally appalled as 2 woman in Walmart were discussing my daughter and how she must have fallen or been abused in some way. This made me so angry, I saw red. I told these women that she had a bpi from birth due to the fact she was a large baby. This also made me realize the face that my poor daughter might have to deal with stares all of her life due to the fact that she has a bad contracture. So far, her arm is only 2 inches shorter. But it may get better or even worse..who knows. Anyway, this just really hit home today and I am so very thankfull I have a place to vent. Thanks to all of you who also deal with this everyday. Heather

Hello, Savannahs' mom, I have not yet had to experience what you are experiencing at this point and time of your daughters' BPI and I pray that we may not have to because the small town we live in sounds exactly like the town you live in, we always go to Walmart with our children and some there is either staring or saying something about my children and our family, no one has respect for anyone these days or does not know how to ask ?'s, they just assume the worst and by doing that it makes and ass out of them and you. Hold your chin up and just know that you are not alone in this one. You will be in our thoughts and prayers. Just remember to stand up for yourself and your baby, don't let anyone try to put you down. I also am worried that my daughter will be starred at and made fun of, I just have to remember that she is special and I didn't do this the Dr. did. Thanks for listening. Lesley Janes' Mom (Danielle)

I'm so sorry that happened to your family. I noticed many stares and head shakes while my daughter was in the sol splint. Ironically, I worked for CPS at the time. I did notice something kind of neat though, elderly people and children seemed to be very curious and did not tend to make assumptions. They asked questions and were interested in the answers. They offered encouragement, prayers etc. The older people headed home on missions to educate their daughters and grand-daughters. Fortunately, there were many more curious, decent, well meaning people than there were idiots. Keep your head up and your eyes open for the decent people that are out there. Oh, High five to you for standing up for your child and yourself.

I saw this and just had to respond. Amazingly for us, we got the most stares while we were in Texas after Bens primary. In the hospital, on the elevator, one person gave us a dirty look and said "how did the baby break his arm?" along with a dirty look, I explained that the baby hadn't broke his arm, that he'd just had surgery. When we got home to our small town, most people, I am fortunate to say, just asked us what was going on with him. Just remember to keep your head high and when you feel its neccessary, to tell them whats going on. Of course, this is just my opinion!!!

I know it can be sometimes hard, but I have learned that the best thing to do is to use every opportunity as a means to build awareness.

That way you walk away from any encounter actually feeling good because you have had the opportunity to educate someone and maybe, just maybe, save someone else from having to experience what we have all experienced.

I found that the most questions and the most stares I got were following surgery when I was in the splint. Otherwise most people don't notice at all, and my arm length, while noticeable to me at 5 inches of difference, is not noticeable at all to anyone else.

Nancy

We had moved to TEXAS when my son had his second surgery and I believe it is just TEXAS We were in Walmart also when we overheard people whispering about what we had done to the poor child. Me being me I turned around and said....I am sure glad that TEXAS CHILDREN's HOSPITAL repair other people's mistakes. They looked at me funny but soon understood !!!!!

We had this same problem recently with the splint my daughter was wearing after Mod Quad.Try decorating the immobilizer. Instead of people just gawking or asking what happened to her arm it changed to oh how cute and then to give out some awareness.It's always nicer if you can turn a negative into a positive.It's really easy with fun foam shapes and velcro or even just stickers.

I know what you mean. It wasn't because of a cast that everyone stared, it was because Michael was bald from chemotherapy. They not only stared, but they deliberately got out of our way as if he or I would make them sick just by being next to us. Little did they know that they were more dangerous to Michael's health than he could ever be. I would get comments like, don't you think he belongs in the hospital? Why does he look so bad? Thats a pretty short hair cut, don't you think? I can't believe that woman would bring her kid out looking like that! Needless to say I got pretty good at looking right through them. Michael would ask me why people were saying such things and I would tell him that, that is what ignorance is. People jump to opinions about people without knowing who they are or what has happened.

Bottom line? They are strangers. Their opinion is not important. Look right through them. You owe no one an explanation on your child.

Thank you all so much for all the support. And to plaliscak, you are exactly right! These people are complete strangers and who cares what they think. We know all that our children are going through and if they are so stupid that they assume things and don't ask us, then thats THEIR problem. Heather :O)

its sad but true that people will say the darndest things, one man asked me if my baby had a deformity when she was in the cock up splint. after mod quad a police officer approached us about why she was in a splint. that was really scarry, you never know what people think.