United Brachial Plexus Network, Inc.

hey moonchild, there is going to be a camp this year in potosi, missouri, in july. maybe it would be a good thing for you to come and talk face to face with a lot of other parents, children and adults with this injury and have been through what you have been through. there is a scholarship program you can apply for if you need financial help. hope to meet you there.

Thanks JMar.. This decision just happened this past week. It feels like the jury basically said, "we don't believe you or that the doctor could do what you're accusing him of"..

I want to scream!! but at whom??? I want him to apologize instead of lying to cover up his mistakes! Who will listen to our cries, our screams, our truth?? Who will comfort us, understand us, or be sympathetic/empathetic towards us?? We're not healthy enough to be that for each other..

I find myself drinking more adult beverages than usual, hoping to numb my feelings..please don't be judgemental, I'm just being honest about my pain..

i sent you a private message.
i will NEVER be judgemental of you. actually, i am very happy you came on here for help and support. you will find a lot of help support on here with no judgement.

This morning I woke up to a private message from JMar and boy, did it ever make me giggle. As I was smiling and responding to her pm, I suddenly felt and knew that things would be ok!! So today I will re-claim my life back and take steps towards recovery instead of dispair

Thanks to all who responded and helped me get out of my "funk" and once again JMar, you made my heart and spirit smile this morning...

Thing dont change???
When I got my birth erbs in 1950, My Mom was told I had polio Back then Doctors were look at as perfect I wish I new how and why these cases end the way they do today?? There has to be cases that do work and why they DO???
For some reason the one of the best thing I learn growing up was the determination I saw in my mom and what help me in standing my ground later in life in legal fights I got in a couple of times . I went into them think nothing about the outcome , I gust was so tick off I could not accept not following threw. What a mental drain, out comes I cant even talk about GAG ORDER

You are at a positive place here, You will never get over it,But Venting finding a new direction will here. By your post there is help for your child and you. Determination in trying is a great thing to have , Seeing your chid learning to adapt will give you great Joy, All you have to do is see the thousands of post of others overcoming there limitation If your child or you need help?? Gust post , I am always amazed what I read here to. I gust hope it may give both a moment of peace?? You guys are never alone here

Maybe it would help if you talk to parents at camp??

best wish and hopefully a healing to a point ?????

Tom

Moonchild,
"jmar" is my roommate at Camp in July. Come to Camp and meet us. I promise it will be Lifechanging for you. You'll be blown away at what we "BPI-ers" can do. It has made me a strong person. I did not find the true name or diagnosis until I was age 66. My mother died in 2000 believing she caused these injuries.

Watch out for this Hugging gramma when you do come!
Carolyn J
LOBPI/73+
HUGS HEAL!

thank you moonchild. i hope you enjoy your excercise and teach those animals a lesson or two. lol good luck.

Moonchild this is for you...posted on FB by another mother like you~: HUGGZ

Welcome to Holland
by Emily Perl Kingsley
by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this . . . . . .

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland".

"Holland?!?!" you say. "What do you mean Holland???" I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

The important thing is they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around ... and you begin to notice Holland has windmills ... and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going to Italy ... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned."

But ... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Carolyn J
LOBPI/73+

how do we recover?

we don't recover

we will never be the same people we were before the injury and before the surgeries and before the daily therapy and before the anger and the sadness and the pain and the inner screams that want to be screamed all day and night

but whether we like it or not, life goes on
and everything changes

and other things will happen in your life that might just make this look smaller than it did a day ago or a year ago

there is no recovery for me for who I was
but over the years I've come to some sort of acceptance
and with acceptance I've been able to recreate myself - like a butterfly

THEN both my parents got very ill and died within months of each other and I sunk even deeper than I did with my daughter's injury
I'm still looking for the sunshine that still only flickers through the clouds on certain days or hours or minutes

life is hard

but the learning that we do by going through these hard times is unbelievable
and life changing and amazing

I will never be the same person -- thank God
I have so much more appreciation now for the little things
I have so much patience now that I never had before
I have so much love -- I feel it at a depth I've never been able to feel it before

the really hard things seem to uncover blessings

yet, I still cry.
AND it's OK.

-francine

Beautiful post, Francine.

I would also like to add... the hardships in our lives uncover our weaknesses, in ourselves and in our marriages - they don't create them.

For a long time, I blamed what "happened to us" for my struggling marriage, for taking away the life we "should have had". Through Retrouvaille, I have learned this isn't the case. EVERY marriage takes "hit after hit". EVERY life is hard, in one way or another. Yes, our hits were hard on us, but the main reason they became so difficult to bear is because of weaknesses - in ourselves and in our marriage - which were always there from the beginning of our relationship. Our hard times uncovered our weaknesses, they didn't cause them. Our "hits" challenged us to a point where the inherent shortcomings of the "house" we had built (our marriage) started to fail. But a house doesn't fall down in an earthquake because the quake is evil or bad... it falls down because it was not built strongly enough to withstand the quake. And you don't just say "oh, well, I guess we shouldn't have a house". You rebuild and make it better than before. And you don't just yearn for the same house, because that old house wasn't strong enough. The future you can build now can be better than the past which was taken from you.

The most amazing thing about Retrouvaille, for us, has been witnessing the amazing depths that couples can overcome, once they put the tools in place and learn to support and uplift one another, rather than tear each other down or retreat from each other in times of stress. If you had asked me months ago what I thought the limits a relationship could endure... it would be nothing to what we have witnessed in the last month and a half. And these couples, through their struggles, are coming to such a wonderful place, one which I don't think I ever believed could even exist in a marriage. They give me such hope, and now I realize our hope is in our future that we are building together right now... not our past.

Kate