Hi Michelle.
It doesn'tmatter that my son's injury may be more serious then yours. You still have to live through it. And it seems that you are doing it awesomely. It is great that you play piano and do karate. Every time you do one of those things or try something new it is a great accomplishment for you. I hopemy son can have the same outlook you do.
Thanks for sending the response. It really has helped me.
Michael
I need help
Re: I need help
Hi Frigger, welcome. I don't have a lot to add to this conversation, I agree with all that has been posted here. I do take anti depressents....they have made a huge improvement in my ability to cope. Know that we are always here to suport you, and Good Luck with your son's upcoming surgery!
Respectfully,
Lenni
Respectfully,
Lenni
Re: I need help
Hey brother, this is M&M dad typing under mom's ID. I went through about a years worth of rage and depression. My kid will be two in march, he had his second surgery in September 02. I can't really say what got me out of it. I guess thinking about how I was acting toward the family grasped me. I was nasty to everyone. My work suffered, I didn't care about anything. I am not a philosopher, but I think time is one of the answers for you. You have to accept it, and be there for everyone. You need to to do it for them and for yourself. The injury isn't going to go away and neither is the rage. You have to strive on. Your kid already has a life altering injury, he needs a dad that doesn't look at him and want to die. He needs a dad that loves him for him and all that he still can be. Don't let the injury define him or you. I've been there man. Good luck.
Re: I need help
I am so happy when dads come on the board. So often they just keep on keepin' on...My husband is from the strong and silent world. And, as I openly suffered from the effects of guilt and anger, he just kept telling me "it will be okay." Funny, I never stopped to ask him how HE was doing. I have turned the corner. It took 3 years and 40 new pounds, but I did it. Here is what I learned. The injury is not going to change. The surgeries will help, and will heal. But there is no magic bullet. You will not wake up one morning and find that all is perfect again. I do not say that to make it worse. I think the key to dealing with this injury is ACCEPTANCE. Since you can't change that the injury occurred, change what you can...that is your response to the injury. I can look at Juliana now and see HER, not the injured arm attached to her. I am happier, I am more in control. I am reacting to everything better. Okay, I still have moments, but I had them before I even had her!! (She is my 4th...) Understand, as well, that there is a grieving process, and you have to grieve for the child you lost in that delivery. But you need to focus on the child you gained in that delivery too. If you make a list of what your child can do, versus can not, you will see that the cans outweigh the can nots. Because my daughter can smile and light up a city, and laugh and everyone laughs too, and tell knock-knock jokes that make no possible sense, and learn her abc's and play tennis (yes, at 3) and swim and run and play Rescue Heroes and dolls and trains and anything else SHE wants to. She does a lot of it differently than her peers. But that only adds to my amazement.
However, as I rarely asked my husband how he felt. Talk to your wife. Share this. Tell her if you feel responsible, she probably does too. Share the pain. And work through it together. And counselling is a great idea. Your friends might not understand what you are going through, but your wife does. And we do. And remember, pre and post surgical times are the WORST.
Be well. Hope it helps,
claudia
However, as I rarely asked my husband how he felt. Talk to your wife. Share this. Tell her if you feel responsible, she probably does too. Share the pain. And work through it together. And counselling is a great idea. Your friends might not understand what you are going through, but your wife does. And we do. And remember, pre and post surgical times are the WORST.
Be well. Hope it helps,
claudia
-
Michelle_16
Re: I need help
Hey again, i dont do karate nemore, that was jst one of those things i wanted to try and my parents didnt hold me back from tryin, that way i wasnt told no i wont b able to do because of my arm, i found that out myself and that is probably the best way for a child. unless they wanna try bungee jumpin...jst tell them no then! lol.
Goodluck!
Michelle x
Goodluck!
Michelle x
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admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: I need help
pray...and thank God that your child is here because your child is a blessing no matter what. accept that he is injured---but alive and here Praise God! talk to someone who can show you how to allow yourself permission to feel better and lay down guilt that you may be feeling unjustifiably. you have to give up some parts of the experience in order to get to the better parts of just raising your child! yes, the injury is a huge factor, but your relationship with your child will be just fine and you will get better! all of us have to get used to waiting and giving all things considered plain old time! i feel you! i feel for you! God bless you and make you feel whole and at peace and ready to go!:)LLLLLOOOOOLLLLL!!!
Re: I need help
You deserve to take care of yourself, too! As for therapy, shop around for a therapist who clicks with you. I have been on a newer anti-depressant called Effexor and have had very good success.
Also wanted to share that my husband has struggled more than I have to accept our son's injury. He gets really angry, and he shares that with me, but when he feels depressed he is much more likely to keep it inside.
From the time our son was a newborn, I found myself feeling much more worried about his self-esteem than his actual injury. Of course I hope he gets as much function in his arm as possible but more than anything I hope he will be a happy, confident person. So I forced myself to think positive thoughts myself, especially when I hold him or when I was still nursing. I make sure I don't frown when I look at his arm or do ROM, etc. I think he picks up on the vibe. I have found that this helps me a lot. My positive attitude translates hopefully into his positive attitude.
Take care!
Julie
Also wanted to share that my husband has struggled more than I have to accept our son's injury. He gets really angry, and he shares that with me, but when he feels depressed he is much more likely to keep it inside.
From the time our son was a newborn, I found myself feeling much more worried about his self-esteem than his actual injury. Of course I hope he gets as much function in his arm as possible but more than anything I hope he will be a happy, confident person. So I forced myself to think positive thoughts myself, especially when I hold him or when I was still nursing. I make sure I don't frown when I look at his arm or do ROM, etc. I think he picks up on the vibe. I have found that this helps me a lot. My positive attitude translates hopefully into his positive attitude.
Take care!
Julie
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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
Re: I need help
you are right, your situation is not unique and I believe I detect quite a strength within you, get some professional help,
and / or
seek out others who have gone thru similar experiences, not necessarily BPIs but challenges, but who have recovered the sense of serenity and well being or whatever it is you are looking for, and reach out to them, likely they would be honoured to support you,
stay in touch
it will be ok.
and if you pray, pray,if you do meditation, meditate, yoga, yoga, do whatever you do to keep an open line with your higher power.
May you find relief soon, mary
and / or
seek out others who have gone thru similar experiences, not necessarily BPIs but challenges, but who have recovered the sense of serenity and well being or whatever it is you are looking for, and reach out to them, likely they would be honoured to support you,
stay in touch
it will be ok.
and if you pray, pray,if you do meditation, meditate, yoga, yoga, do whatever you do to keep an open line with your higher power.
May you find relief soon, mary
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: I need help
Reading your words takes me back to when our now 6 1/2 year old son was born. Between the BP injury and the nucal cord bruising, he was so damaged I didn't get to hold him until about 8 hours after delivery. We were so stunned when we brought him home, with his arm pinned up, that we just hid. I remember steeling myself when calling people to say that I had delivered my son and that he was partially paralyzed. Some people never called back (cowards).
Zach was like a fragile little bird with a broken wing that hung off the side of his body. Two TCH surgeries, and countless hours of OT and PT later, he is a strapping red headed, blue eyed whirlwind that climbs EVERYTHING (oy!) and builds fantastical machines using TWO hands. Yes, you can see a difference. Yes, it took longer for him to learn how to walk, and he wasn't able to run until he was 3 years old (post 2nd surgery), but he runs plenty now.
What can I give you? The following:
1. This is survivable.
2. The anger and depression is very real, and very frightening. It's like standing on a precipice and looking into a dark swirling black hole filled with debris and a terrible roaring sound that only you can hear. The stresses can be a real marriage breaker. Our's was almost a casualty. Almost. We fought back against the pain and rage and feeling of isolation and decided that what our 2 children needed was more important than our own needs to withdraw and quit.
3. Compunding our problems was how Zach's medical needs brought my career as an art director to a screeching halt, along with the income it brought in. Personally I was faced with both learning about what Zach needed, and dealing with co-workers who were less than sympathetic, to the point of being down right crass about it ("Could have been worse - it could have been his leg.." told me my first week back after maternity leave). Made me want to tear their nerves out and see how they managed. Thank God we have excellent health insurance. I finally realized a few months ago that when I had to stop working back then, I also lost my public identity, and that now I have to reinvent who I am. Took 5+ years to understand this.
4. You will learn much from being in the world that is within the halls of children's hospitals. I saw real courage there, the quiet kind that expresses itself in minute movements, that sometimes pedals a tricycle while wearing pressure bandages covering burn scar tissue, as I saw once at Seashore House in Philadelphia. I would come away from my weekly trips to CHOP amazed at the wide variety of trauma's that kids live through, and feeling that while what we were experiencing was bad, that we would all survive somehow.
5. I learned that parents of ill or injured children will sit with you quietly and listen without judging your right or lack to complain, rant, vent or cry. Talk to other parents in the waiting rooms, and also be sure to listen. Offering small charities can ease your own burdens.
6. Climbing into a bottle of booze or pills only makes matters worse. If you or your spouse is taking this way, please get help. Now. The emotional need to escape the frustration, feeling of having failed (you didn't), the pain of watching your child struggle, the mistrust of doctors and the future, the bills that have to be paid, can all make the desire to blunt the edges very hard to ignore. Chemical compromise will just make you unavailable, and drain your personal and family resources.
7. Your sense of what is important will change. Your ability to tolerate will change. In someways, life elements that you are willing to accept will expand, in others it will shrink. You may find yourself with a greater sense of clarity as to how your life should be lived. It may take a few years to reach this point.
8. Some friends will have the strength to stand by you. They will be your shelter, and you will be grateful for them. Be sure to let them know once in a while that you saw they were there for you. Some will dissapear, leaving you feeling cast off, abandoned, betrayed. Let them go. They are poor in spirit and will probably wind up hating themselves for their weakness. You have more important and worthy things to do with your time than to let them poison you with their lack of honor.
8. Love. Deeply, softly, honestly, passionately. Little things and grand. Your wife, your child, and when you are ready, yourself. When you feel too tired, too used up, and can't love, try kindness instead. Loving can be spiritually intimate, and some times when you are feeling wounded, it's not possible to expose the heart that much. That's why I suggest kindness until the strength returns.
May the spirits protect and strengthen you and yours. May you and your wife look forward to telling your son to quit climbing on the furniture, drawing on the walls, and to stop throwing balls in the house. Which he probably will eventually do. Like every other kid. Like my own. Take care. Spring is coming, when all things are new again.
Zach was like a fragile little bird with a broken wing that hung off the side of his body. Two TCH surgeries, and countless hours of OT and PT later, he is a strapping red headed, blue eyed whirlwind that climbs EVERYTHING (oy!) and builds fantastical machines using TWO hands. Yes, you can see a difference. Yes, it took longer for him to learn how to walk, and he wasn't able to run until he was 3 years old (post 2nd surgery), but he runs plenty now.
What can I give you? The following:
1. This is survivable.
2. The anger and depression is very real, and very frightening. It's like standing on a precipice and looking into a dark swirling black hole filled with debris and a terrible roaring sound that only you can hear. The stresses can be a real marriage breaker. Our's was almost a casualty. Almost. We fought back against the pain and rage and feeling of isolation and decided that what our 2 children needed was more important than our own needs to withdraw and quit.
3. Compunding our problems was how Zach's medical needs brought my career as an art director to a screeching halt, along with the income it brought in. Personally I was faced with both learning about what Zach needed, and dealing with co-workers who were less than sympathetic, to the point of being down right crass about it ("Could have been worse - it could have been his leg.." told me my first week back after maternity leave). Made me want to tear their nerves out and see how they managed. Thank God we have excellent health insurance. I finally realized a few months ago that when I had to stop working back then, I also lost my public identity, and that now I have to reinvent who I am. Took 5+ years to understand this.
4. You will learn much from being in the world that is within the halls of children's hospitals. I saw real courage there, the quiet kind that expresses itself in minute movements, that sometimes pedals a tricycle while wearing pressure bandages covering burn scar tissue, as I saw once at Seashore House in Philadelphia. I would come away from my weekly trips to CHOP amazed at the wide variety of trauma's that kids live through, and feeling that while what we were experiencing was bad, that we would all survive somehow.
5. I learned that parents of ill or injured children will sit with you quietly and listen without judging your right or lack to complain, rant, vent or cry. Talk to other parents in the waiting rooms, and also be sure to listen. Offering small charities can ease your own burdens.
6. Climbing into a bottle of booze or pills only makes matters worse. If you or your spouse is taking this way, please get help. Now. The emotional need to escape the frustration, feeling of having failed (you didn't), the pain of watching your child struggle, the mistrust of doctors and the future, the bills that have to be paid, can all make the desire to blunt the edges very hard to ignore. Chemical compromise will just make you unavailable, and drain your personal and family resources.
7. Your sense of what is important will change. Your ability to tolerate will change. In someways, life elements that you are willing to accept will expand, in others it will shrink. You may find yourself with a greater sense of clarity as to how your life should be lived. It may take a few years to reach this point.
8. Some friends will have the strength to stand by you. They will be your shelter, and you will be grateful for them. Be sure to let them know once in a while that you saw they were there for you. Some will dissapear, leaving you feeling cast off, abandoned, betrayed. Let them go. They are poor in spirit and will probably wind up hating themselves for their weakness. You have more important and worthy things to do with your time than to let them poison you with their lack of honor.
8. Love. Deeply, softly, honestly, passionately. Little things and grand. Your wife, your child, and when you are ready, yourself. When you feel too tired, too used up, and can't love, try kindness instead. Loving can be spiritually intimate, and some times when you are feeling wounded, it's not possible to expose the heart that much. That's why I suggest kindness until the strength returns.
May the spirits protect and strengthen you and yours. May you and your wife look forward to telling your son to quit climbing on the furniture, drawing on the walls, and to stop throwing balls in the house. Which he probably will eventually do. Like every other kid. Like my own. Take care. Spring is coming, when all things are new again.
-
Kathleen M
Re: I need help
Stacy - what a beautiful response... your post gives me some insight in the feeling of a parent of obpi.
I am not sure if I can help... I am 63 years old and right OBPI... I never once blamed my parents. I never thought it was something that could have been prevented. Now I know that it can be. I was always told that the doctor made a mistake - had he been more attentive he would have seen all the red flags present... I am not angry at him... I just always know that he did something wrong and injured me and my parents were grateful I was alive...
Your sadness, I think, is typical of our society that does not allow men to freely express their pain... I am so glad you posted here... all to often men turn to drink or pills to help contain their feelings... Becoming more active in your child’s therapy care and life will give you the comfort you need. Spreading Awareness empowers you and allows you a way to speak out.
I climbed trees (and fell out of them too), roller skated, sang, danced, played basketball and dated-- kissed some frogs and married my prince 37 years ago... I know that sound silly but I want you to know that our injury is not the end of our life... It changes our path and makes us strong, stubborn, persistent, flexible, creative... And most of all I developed a sense of humor that truly is a gift...When I found this board three years ago I thought I was the only one with this injury... I spent 60 years without ever meeting anyone with my injury or anyone who understood this injury... Now through UBPN I have found another path – I try to educate and spread Awareness information when ever I have an opportunity…
I never considered my injury severe nor did I ever think I was a disabled person... the word handicap or disabled were never uttered in my family... ( I have c5-6-7-8 & T1 involved) My family told me I was paralyzed the first year and I wore a brace for 11 months only off for ROM and massage...
Hope is a wonderful thing... Never loose it…
As a child prayer sustained me, as a parent prayer sustained me and as a grandparent prayer is my way of coping...
I hope you can find your path to peace with this injury... The sooner you find peace the sooner you will feel joy... Please don't forget to look at all the joyful experiences – smiles, kisses and hugs that fill your days with your son... By focusing on this arm you give your power away and loose precious time with your baby…
Kath
I am not sure if I can help... I am 63 years old and right OBPI... I never once blamed my parents. I never thought it was something that could have been prevented. Now I know that it can be. I was always told that the doctor made a mistake - had he been more attentive he would have seen all the red flags present... I am not angry at him... I just always know that he did something wrong and injured me and my parents were grateful I was alive...
Your sadness, I think, is typical of our society that does not allow men to freely express their pain... I am so glad you posted here... all to often men turn to drink or pills to help contain their feelings... Becoming more active in your child’s therapy care and life will give you the comfort you need. Spreading Awareness empowers you and allows you a way to speak out.
I climbed trees (and fell out of them too), roller skated, sang, danced, played basketball and dated-- kissed some frogs and married my prince 37 years ago... I know that sound silly but I want you to know that our injury is not the end of our life... It changes our path and makes us strong, stubborn, persistent, flexible, creative... And most of all I developed a sense of humor that truly is a gift...When I found this board three years ago I thought I was the only one with this injury... I spent 60 years without ever meeting anyone with my injury or anyone who understood this injury... Now through UBPN I have found another path – I try to educate and spread Awareness information when ever I have an opportunity…
I never considered my injury severe nor did I ever think I was a disabled person... the word handicap or disabled were never uttered in my family... ( I have c5-6-7-8 & T1 involved) My family told me I was paralyzed the first year and I wore a brace for 11 months only off for ROM and massage...
Hope is a wonderful thing... Never loose it…
As a child prayer sustained me, as a parent prayer sustained me and as a grandparent prayer is my way of coping...
I hope you can find your path to peace with this injury... The sooner you find peace the sooner you will feel joy... Please don't forget to look at all the joyful experiences – smiles, kisses and hugs that fill your days with your son... By focusing on this arm you give your power away and loose precious time with your baby…
Kath