The months since my daughter Rowan (LOBPI) was born have been the best and the worst months of my life. I know that all of you will understand that and I guess that is why I'm posting this here. I feel as though I need someone to validate my feelings. She is 5 months old today, born on 9-11, and today has been really hard. I guess I thought all along she would be completely recovered by now and since that hasn't happened...
I think one of the hardest things to deal with since her birth is the reaction that other people have to her injury. Some people just don't know what to say...they mumble something about being sorry or something like that...I can almost appreciate that. The ones I really hate...
"You should be grateful it wasn't worse...she could have something serious wrong with her like CP or something like that..."
Of course I'm grateful that Rowan doesn't have CP or severe brain damage or a long list of other things that can occur...isn't everyone grateful when their child doesn't have those problems...I don't think the emotions are mutually exclusive...I can be grateful she doesn't have CP and still be mad as he11 that she does have a BPI!!!
"My friend/cousin/sister has a baby that has Downs/Autism/Other Condition. That's so much worse that what Rowan has...you should be thankful..."
Yes, there are worse things that Rowan could have, I admit that, but NO, NO, NO!!! It is not the same!!!! This is something that someone did to her, it could have been prevented!!! If a drunk driver hit your child and paralyzed his arms, you wouldn't say "well, it could have been worse...at least he doesn't have (insert dread disease here)..." It just isn't the same thing!!! Please don't think I mean to minimize the severity of those other conditions...I absolutely do not. It is just the preventable nature of this injury that hits me the hardest.
"At least it isn't her heart or something vital..."
No, thank God, her heart is fine. Mine, on the other hand, is broken in two.
I know that all of these feelings are not necessarily healthy and that I should try to move on past the anger and be grateful for all that we do have. I sometimes feel like a child crying "it's not fair, it's not fair."
We just found out last month that Rowan doesn't need primary...we are truly so grateful for that. The day that she bent her elbow was one of the happiest days of my life...that in itself makes me sad, that I am forced to be happy for things I should take for granted, things she should take for granted. I know that Rowan is already better off than many of the other Erb's babies and that fills me with sadness too. Why do these doctors keep doing this to our babies? I just hurt so very very much.
-Stacey
Vent
Re: Vent
Stacey - I acknowledge your pain and your anger and your sadness and your grief. These are all normal feelings for all of us. I'm glad that you shared it with us here.
Words can be very painful...but I have to tell you that I believe that most people just don't understand too much about this injury. It's not like the 'usual' injury - it's just so different. First of all somebody did this to our kids because they were being negligent. Second of all- the recovery 'fight', the timelines, the stress is just incredible. It seems like it's a never ending battle.
I'm sure that some time in your life you were in a public place and saw someone with a physical anomoly (sp?) and stared for a minute or two. You don't know them so you don't strike up a conversation- but if it were someone you knew, you might be saying something that to 'them' would be really off. How do YOU really know what that person is going through or feeling, right? I know I've said some pretty awful stuff without even realizing it - even recently. It's because I just don't know what it's like to really be in that person's shoes and don't know what their emotional "holes" are.
I can tell you that (Maia is almost 5 years old) these emotions may still be prevalent throughout your daughter's years. There was a counselor that talked to our support group who told us that she felt that the emotions would probably never truly go away - they would surface at different times of your child's life... each new stage brings a whole set of feelings to the surface. BUT when you see your child start being involved in regular kid things, and doing things that all other kids do - albeit be anywhere from a little to VERY different - it will slowly become easier and better for you.
I remember Maia's first 4th of July celebration. I watched kids throwing a ball with each other and I sat there and sobbed - thought that Maia would never be able to do that. Well let me tell you that she's got the ball thing downpat. Actually when we had our doctor's appointment for the defense (lawsuit) - Maia hit the doctor with a tennis ball pretty hard! (go girl! LOL).
So when things seem and feel too hard and too emotional - allow yourself to feel them completely because that's truly important - and then when you can breathe again try to focus on just one thing that's positive. If you can't easily get out of the emotions, enlist some professional help. Counseling is good and sometimes medication can even play a positive role.
Congratulations on your sweety not needing primary! This is just wonderful news. Happy 5 month birthday Rowan!
big hugs,
francine
Words can be very painful...but I have to tell you that I believe that most people just don't understand too much about this injury. It's not like the 'usual' injury - it's just so different. First of all somebody did this to our kids because they were being negligent. Second of all- the recovery 'fight', the timelines, the stress is just incredible. It seems like it's a never ending battle.
I'm sure that some time in your life you were in a public place and saw someone with a physical anomoly (sp?) and stared for a minute or two. You don't know them so you don't strike up a conversation- but if it were someone you knew, you might be saying something that to 'them' would be really off. How do YOU really know what that person is going through or feeling, right? I know I've said some pretty awful stuff without even realizing it - even recently. It's because I just don't know what it's like to really be in that person's shoes and don't know what their emotional "holes" are.
I can tell you that (Maia is almost 5 years old) these emotions may still be prevalent throughout your daughter's years. There was a counselor that talked to our support group who told us that she felt that the emotions would probably never truly go away - they would surface at different times of your child's life... each new stage brings a whole set of feelings to the surface. BUT when you see your child start being involved in regular kid things, and doing things that all other kids do - albeit be anywhere from a little to VERY different - it will slowly become easier and better for you.
I remember Maia's first 4th of July celebration. I watched kids throwing a ball with each other and I sat there and sobbed - thought that Maia would never be able to do that. Well let me tell you that she's got the ball thing downpat. Actually when we had our doctor's appointment for the defense (lawsuit) - Maia hit the doctor with a tennis ball pretty hard! (go girl! LOL).
So when things seem and feel too hard and too emotional - allow yourself to feel them completely because that's truly important - and then when you can breathe again try to focus on just one thing that's positive. If you can't easily get out of the emotions, enlist some professional help. Counseling is good and sometimes medication can even play a positive role.
Congratulations on your sweety not needing primary! This is just wonderful news. Happy 5 month birthday Rowan!
big hugs,
francine
Re: Vent
Oh my, so many times over the last three years I've had the exact same feelings. I found myself distancing from some of my closest friends because I hated to always get similiar comments and I felt alone and like nobody else understood. Now I try to exercise and do other things to help keep my spirits up and find I'm not so defensive with people because they couldn't understand unless they've been through it. Time does help but know we are all hear to listen, smile, and even cry with you! You are in a critical time frame for healing and I pray your childs arm gets much better. lol- Joni Sandoval
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Karen Hillyer
- Posts: 562
- Joined: Fri Sep 06, 2002 1:36 pm
Re: Vent
Hi Stacey
my son Gavin (robpi) is now 11 years old and I remember VERY WELL feeling exactly the same feelings as you do now. Along with the anger and the frustration of constantly having to explain the injury, I was wishing Gavins life away, waiting for the time when " he would get better"
gradually these feelings will lessen and lessen and eventually they will almost go - for the most part.
There will always be days and times when you will be back to square one, feeling like you do now, but they will be fewer.
As for other peoples comment, I'm with Francine on this one, now that I " am in the disabled arena" so to speak with one autistic child and one obpi child, I look back at some of the comments I have made to other
people and I cringe with embarassment.
People don't mean to hurt you with their comments, they just can't comprehend that this injury could have been prevented, or that it can't be miraculously cured by medical science. I am sure that if you could gently point out to them that the injury is preventable and shouldn't have happened at all, they will understand why you feel so bitter and angry.
some days you will feel able to do this, others you won't, I'm no saint, sometimes I have just snapped with people and their stupid comments, but for every insensitive person, there will be one person who does understand and that makes all the difference.
If you can explain to people how you feel, then the next time they meet someone with a child who has obpi then maybe they won't make the same mistake again.
It's hard, but it's also very new to you and time does make things slightly easier to cope with, I promise you.
I hope you find the strength to get through these bad times.
Blessings
Karen
my son Gavin (robpi) is now 11 years old and I remember VERY WELL feeling exactly the same feelings as you do now. Along with the anger and the frustration of constantly having to explain the injury, I was wishing Gavins life away, waiting for the time when " he would get better"
gradually these feelings will lessen and lessen and eventually they will almost go - for the most part.
There will always be days and times when you will be back to square one, feeling like you do now, but they will be fewer.
As for other peoples comment, I'm with Francine on this one, now that I " am in the disabled arena" so to speak with one autistic child and one obpi child, I look back at some of the comments I have made to other
people and I cringe with embarassment.
People don't mean to hurt you with their comments, they just can't comprehend that this injury could have been prevented, or that it can't be miraculously cured by medical science. I am sure that if you could gently point out to them that the injury is preventable and shouldn't have happened at all, they will understand why you feel so bitter and angry.
some days you will feel able to do this, others you won't, I'm no saint, sometimes I have just snapped with people and their stupid comments, but for every insensitive person, there will be one person who does understand and that makes all the difference.
If you can explain to people how you feel, then the next time they meet someone with a child who has obpi then maybe they won't make the same mistake again.
It's hard, but it's also very new to you and time does make things slightly easier to cope with, I promise you.
I hope you find the strength to get through these bad times.
Blessings
Karen
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marymom
- Posts: 692
- Joined: Mon Nov 05, 2001 5:05 pm
- Injury Description, Date, extent, surgical intervention etc: Teen aged home birthed son with OBPI
- Location: Fort Pierce, FL
welcome to Holland
Welcome To Holland
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.
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 your 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."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that 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 that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from 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."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
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.
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.
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 your 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."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that 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 that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from 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."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
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.
Re: Vent
After reading your post all I could think of was "Wow" - you have such a gift to be able to express your feelings so exactly and help others understand and feel too.
I also wanted to add that with me, as years have gone by, I do not expect people to understand my daughter's injury anymore because I don't think they ever really could - same as I have no way of knowing what others go through daily although I try to understand - I'm sure I can't possibly understand.
What has helped me deal is believing that the doctor did not intentionally set out to injure my daughter.
Thank you for sharing such an excellent post. There was so much feeling pouring out of it. You really do have a gift with writing.
Christy
I also wanted to add that with me, as years have gone by, I do not expect people to understand my daughter's injury anymore because I don't think they ever really could - same as I have no way of knowing what others go through daily although I try to understand - I'm sure I can't possibly understand.
What has helped me deal is believing that the doctor did not intentionally set out to injure my daughter.
Thank you for sharing such an excellent post. There was so much feeling pouring out of it. You really do have a gift with writing.
Christy
Re: Vent
Oh Boy! Where I do I start! Feeling? one liners? Having a child with both BPI and Leukemia I get it from both ends. From the BPI end my favorite is "I don't see anything wrong? It could have been worse..." and so on. On the leukemia end my favorite is... "you are so strong...I could never go through that..." as if I signed up for it! I don't want to bother you with my little problems, yours is so much worse..." Although I try to understand were they are coming from...the bottom line is, you do for your child because you have no other choice, but to fight.
The feelings are very different. BPI makes me extremely angry because like she said, It was preventable. Cancer is just bad luck.
Patty
The feelings are very different. BPI makes me extremely angry because like she said, It was preventable. Cancer is just bad luck.
Patty
Re: Vent
I understand where you are coming from. I think you expressed yourself very well and I'm thankful that you can share this with us. I think all us us have felt this at one time or another....I remember one thing that made me so angry I wanted to lash out was when complete strangers look at you like you must have abused your child or something!!! They think that because a tiny baby wears a brace that the parent must have done it!!! GRRRRRR...My son used to have the Department of Developemental Disabilities come to the house to evaluate and do therapy and they drive the same car as the Child protective services drive!!!! I used to see the neighbors stand outside their houses and stare!!! I was so humiliated....I just wanted to hang a sign on my house that said how my son was injured...I didn't and I got thicker skinned...but it still hurt at the time.
Thanks for sharing with us!
T.
Thanks for sharing with us!
T.
Re: Vent
Theresa - I know what you mean. Sometimes I hear "did she break her arm? Is that why she carries it like that?" (Like she broke her arm and I didn't bother taking her to the doctor???) Then when I tell them that her nerves were injured during birth I get a reply like, "Well it sure seems like they could fix that". (Like she needs 'fixing' - - AND - - It's not that simple!!) I guess people are either nosey or they try but it comes out very wrongly worded or something ......I've become thicker skinned too!
Christy
Christy