Is it just me?

[Brenda]

Hey everyone. I haven't posted in a while, but I do lurk. Recently, I took my 1 1/2 yo daughter (LOBPI) to the dr's office because she had been falling a lot, out of the norm so to speak. She hit pretty hard and I was worried. We had to see a doctor who didn't know us but seemed to be half way intelligent.
After finding the root of the problem, an ear infection, he asked about her arm and how it happened. He asked 'when the drs at children's thought it would get better'? I just lost it, and asked somewhat sarcastically if he understood what I had said, that her nerves were severed and they are not JUST GOING TO GET BETTER!"
Later I felt kind of bad about it. But I think I am still slipping and allowing my self to believe that drs still know it all when they don't.
My mom was with me at the time and told me I was too negative and that I should be nicer and not so negative. She told me I was negative about everything regarding my daughter's arm. She said I should just smile when strangers tell me they are sure it will get better. Instead I want to scream at them how they know they are so sure.

Does any one else get this? I am not trying to be negative. I think I am just being realistic about my daughter's injury. It's not just going to go away, she doesn't just have a broken arm.

Thanks for letting me vent about it. If any one out there understands me I am sure it will be someone from here.

Brenda

[Francine_Litz]

Brenda - I completely understand the frustration you feel as everyone else probably does, too. When people say that it'll get better I respond with: "No... it's a lifetime issue." Sometimes they'll ask for more information and sometimes not. If not I just leave it alone. It took me years to get to this point though..hahaha. It's NOT easy answering the questions. Give yourself a break. You're in the midst of this - and you have all the emotions that are expected for something like this.

big hugs,
francine

[marymom]

there are no shoulds here
be open to healing
a healing which is far deeper than regaining some type of change in an arm.
go deeper, this event is asking you to go deep.
get mad, do what you need to do for you,
but try to be open to healiing.

[admin]

I feel the SAME way...those phrases drive me nuts. I don't work anymore, and whenever I talk with my old colleagues they always ask if Caitlin is all better now. GRRRR. I try to liken the injury to something they can grasp...like I'll say it's kind of like a back injury in terms of once you have it, it never really goes away. Sometimes I'll liken the impairment to a stroke. I find that they only way people can grasp the severity and longevity is to talk in these terms. But not everyone really wants to understand,which is why I think they ask such stupid questions (and usually repeatedly!!)

What I'm really grasping with now, is how to answer the question in front of my dd (3), so that it is truthful, but doesn't sound negative. The best I've got so far is... actually, it's a birth injury that she'll always have to manage.

When they say stuff like "I'm sure it will get better", I respond with "yes, that sure would be a wonderful miracle..." or simply "wouldn't that be great". (Of course it goes with this condescending look of "boy you have a lot to learn"..)

This is harder for me to do (thus the look), because I'm ALWAYS feeling like I need to explain my child's injury...and you know now I'm thinking for her sake I don't need too. I don't want her growing up feeling like SHE needs to explain her injury all the time.

[Krista :o)]

No, it is not just you...

I have gotten so used to people who don't understand the inury, so I don't take it very personally anymore when they say stupid things.

Usually I just try to educate them when I see the chance...

I often tell them that the arm will get a bit better and my daughter will learn to do things in her own way. But that the injury is so severe that it will be there for the rest of her life and also affect her every day living, career choices etc for the rest of her life.

[LeeAnne]

I ditto all the above. It's even more frustrating when it's a DOCTOR WHO IS SUPOSED TO KNOW THESE THINGS. Do they sleep in class!!!!!!!!! It's funny how they look down their noses at us with no M.D. but we are educating them. Also the falling and balance issue could be related to the BPI, not just ear infection, because their center of balance is off because of the injury and muscle imbalances. Since He couldn't understand about the injury I'm sure he never thought to consider it an issue in the balance question. I'm sure others herecan testify to the same thing.

[Dean-na]

Hey! Since I am an adult with OBPI it still makes me made when I go to a doctor & they hold their hand out to shake mine & look at me with the strangest looks. Then they ask what happened to your arm..well I am there for something totally different from my arm & just hate going into the whole spill again. Then after I tell them they are just as confused then as they were before they even ask about my arm.

I really don't think there is a lot of doctors that understand our situation. It makes me want to get on a PA system & just scream sometimes to make people understand.

After about a month of working at my current job, the office manager said she noticed I don't use my right arm like my left. It really gets under my skin when people like her ask me that. I don't mind explaining my situation, but I hate when people make it their business. I wouldn't ever ask anyone what was wrong with them.

I just had to throw my 2 cents in.

Deanna

[Brenda]

Thank you all! About her falling, it was an ear infection her first one ever at 16 months. At first I thought it had to do with the BPI but she would be standing upright and just fall over. And one of her PT's said something to me about it. She is over it now.

I can't thank you all enough for making me feel so much better. And I do have hope and I pray that she will get better, BUT reality......

[Francine_Litz]

what's happening to us this past couple of weeks is people looking at Maia's airplane splint and GASPING outloud!!!! almost like ohmygod you are a monster!

I say "she just had surgery" and they usually say is she ok? and I say "yep - rides her bike one handed too!" and walk away....

I HATE that gasp...makes me shudder!!!
they stare and they gasp... what makes them do this??? aarrrggggh

tomorrow I'll start a "gasp counter"... am curious to know just how many we will receive....

on saturday we're going to a carnival.... I think I'll just hand out bpi awareness cards.