United Brachial Plexus Network, Inc.

I love my sister I really, really do! That being said I have never in my life been so royally ticked with her! I am probably way off base here, but you would expect support from your close family members and insensitivity from strangers.

My dear loving older sister told me the other day to get over Melissa "arm thingy" that there were worse fates to happen to parents and that I should be grateful.

ARGHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!

She then went on to tell me that a "good friend" of hers has lost 3 babies (in utero) and that Missy's injury wasn't life threatening.

I very quietly agreed that a) yes Missy's injury wasn't life threatening and that b) there were worse things that could have happened. I asked her if this should negate my grief and anger. Her response: " well it's been two years, get over it!"

ARGHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!

I AM SO MAD!!!!!!!!

(sorry had to vent...thanks)

Ginne

I feel for you, and people not knowing much about this injury just don't understand. This is an injury that is life long. Unlike a death that is tragic, but is over, done, a sorrowful memory, OBPI is a life-long struggle. Fights with insurance companies, doctors, schools, etc. Growth spurts that cause issues, arm length differences, joint malformations, tightness, a constant list of items to look for, not letting your guard down, because if you can catch something early, the better the chances. Spine issues, scoliosis, winging... Teasing, adapting, driving... all these things will be a constent reminder of this tragic injury. Yes, we do get over it, if only to be able to deal with it. But if you read about the adults who have dealt with this injury all their lives, even after growth ends, there is always the possiblity of pain, arthrisus (sp?), over usage of the uninjured arm... we as mothers see this, deal with this & unfortunately must deal with a unjust amount of guilt...so yes, other injuries are tragic, but so are all unnecessary injuries. This is a life-long injury, dealt with on a daily basis...
Remember, you are not alone (I wish I couldn't say that but this injury just keeps happening...)

Ginne,

I share your anger with your sister. She is being very insensitive when she suggests that you "get over it". This is a lifelong disability, one that constantly reminds us of the pain and sorrow when something devastating happens to our children. Sure, there are worse things out there that happen to people. But us parents of BPI kids should at least expect our family to be supportive, and not insensitive to our little ones and the emotions that result from such a traumatic injury.

To be blunt, if a family member had said that to me, I'd have slapped them silly or tell them to jump off a cliff. But hey, that's just me.

I might also suggest that if she'd had lost an arm, would she get over it in two years? I think not.

Best of luck to you,

John Anthony Ferrado

Yep - I would be angry - but I think that people just do not understand. There are issues thru the years non stop with my BPI injured daugher, but also with my other daughter too - it's part of being a parent. Please do not take me wrong here - you DO need to vent!!!!!! I have been hurt many times from comments and so has my child regarding her injury - but they just do not understand. That is the key - they don't get it.

I remember right after Brittney was born and I was trying to understand what they were telling me about her arm - I asked "will she die from this?" which sounds kind of silly but at that time I just wanted my baby - and nobody will ever really understand except those who live it - how could they really? Just like I do not know what it's like for the stuff other people might be going thru - it's hard to to have empathy if you do not understand the issues - but the issues aren't always that bad really because you do have your daughter. I think that your sister will begin to realize though - it might take a while for her to see the impact - and she will be so proud of her niece for being strong and doing so well. It took my whole family a very long time to understand - but they are beginning to I think - especially my sister who used to come and visit often when Britt was younger and could SEE for herself the struggles and the therapy. It's good to vent - but this is your sister and you need to talk to her. This weekend my girls got in a big fight - crying, hurt feelings - I made them sit in the room and not come out until they talked it out. Lots of screaming going on in that room!!! They both came out teary and closer - it it hard to express your feelings and have people actually understand - and it sounds like your sister just isn't understanding yet - she will eventually!:)
Christy

Ginne,

Sounds like the same type of conversation I had with one of my so called close friends. She had the nerve to tell me, "you know you just have to have faith in your doctor....things just happen, otherwise kids wouldn't be dying of cancer". This statement came after we were talking about another good friend who was being induced early because her OB thought she was going to have a very large baby.
This person also made a point to bring up how her labor was rough and her doctor offered a c-section but she chose not to (felt there was more risk to herself and her child) and they had to use both forceps and the vacuum to get her daughter out, but she was lucky...no injury!

People just don't understand period! Needless to say, we haven't spoken since and that was back in early December. At least your sister is family and you can work it out in time.

Take care and be strong.

By the way, I emailed you about a month ago, did you ever get it??

Shellie

Oh, Ginne,

I HATE that response, too! I've heard it on several occasions and just want to scream at people.

What? Are we supposed to just "get over it" because other kids have cancer or other children die? That's horrible to have a child die! Of course it is. And much worse than a BPI. But hey - it's not a fair comparison. Does that mean we can only grieve or feel sad if our child dies?! So if a child is severely burned, do we say, "It's just a burn. Get over it - she could have died?!" Give me a break! That is so insensitive.

People who haven't been through it don't get that it isn't "just an arm" ... it is an injury that affects the WHOLE body and leads to many other problems down the road that affect the child's whole life. Not only that, but unlike Down's or other problems in utero, this wasn't a genetic thing. This is an injury that the doctor I TRUSTED did to my son because of his own stupid negligence - so as moms, we are dealing with our kids' injuries, as well as profound feelings of betrayal from the medical community.

I'm glad you vented. Know you have lots of us venting with you. Have your sis read the TBPI boards for about three weeks and see if she still thinks it's "just an arm."

Janet

I feel for you all.....you, your child, the rest of your family and your sister too. There is no right or wrong answer....venting is good. We do have to grieve and let go of the hard done by feelings at some point , perhaps this is what your sister is trying to get at? My daughter has a ROBI Injury so I know what your going through.......letting go of the victim blues was not easy for me.....not even sure I have let go but I have stopped talking about them . Probably I have not let go...my girl is 9 and I still feel like I have Postpartum Blues. Anyways..just a thought , good luck to you and I think you have been given some good tips.....like maybe if sis didn't use arm for a week or a day....read these boards .

All the best,
Lenni

I am glad you have a place to vent!
People don't get it! Believe it or not people will often say to me (after asking what is wrong with my arm) wow, you are so lucky it's only your arm... it could have been so much worse -- or your lucky you can hardly tell... ( like I don't know that!)
Most times I just blow it off... but sometimes I feel so annoyed and tired of the dumb remarks.

My PT suggested (the next time someone had the nerve to tell me I was lucky) I ask them to tape their arm in my position an restict their ROM to my ROM and live for a day with my limitations. I think that would be funny because I don't think they would last for an hour!
PS... I have never had the nerve to do it.
Maybe you should just sit and talk to your sister and tell her she hurt your feelings. Ask her to read all the materials you have had to and if she would take over therapy for one week. I bet she would feel terrible if she knew how much she hurt you.
Feel better glad you vented.
Kath

Just a funny. Britt just got home from soccer practice a little bit ago and said that a kid at soccer practice asked her if it ever bothered her that her 'arm was like that' and she said that she wanted to tell her "does it ever bother you that your face is like that? - (I'm glad she didn't say it - but push her enough and she will take you down verbally......) but instead she just replied "No - I'm fine with it". The coach was doing drills and even asked if she felt comfortable with doing them - over head ball exercises - he is a coach that seems to understand and cares..... like all coaches over the years so far- no bad experiences here!
Christy

Christy: not to get off topic, but you really made me laugh! I would have said the same thing!!

Ginne:
This is the absolute forum for these feelings. This is why the message boards were created--so we would have a place to learn and share and vent.

It is hard for people to understand the breadth of this injury. And are we happy that our kids were not more injured than they were??? of course!!! No one wants it WORSE for their child. Oy vey. I think you should send her outreach magazine. Let her see what it is like for bpi's. My sister used to read it and cry, so did my mom. My other sister, however, told me once, that it was good that I had the kids with "issues" because she couldn't "handle" a child who wasn't perfect. I really didn't have the heart to tell her that NO CHILD IS PERFECT EXCEPT TO THEIR MOMMY. Because for me... all of my kids are perfect. They get rude, obnoxious, nasty, some not so great grades occasionally, but they are still perfect. To me at least!

And as for "getting over it"... well that does take some time. I know that 5 years past Juliana's birth, I am not so angry. I want change, but I am not so angry. I can talk about her with more perspective. I can see her with more perspective. But we each heal at our own rate and the first 3 years were really not pretty for me!!!

Remember to be nice to yourself (I wasn't). And tell your sister to put her hand in her pocket for a whole day and not use it... then ask her if it is "only an arm"!!

good luck,
claudia