Re: Parental guilt and lack of it

[Guest guest]

-----Original Message-----

From: jacee17@... <jacee17@...>

egroups <egroups>

Date: Wednesday, August 09, 2000 11:35 AM

Subject: [] Parental guilt and lack of it

I am a mother of a son who also has CMT. I do not feel guilty about giving

birth to this child and to the fact that he has CMT. I was not diagnosed with

CMT until my son was 20 years old and I was 45. My father was still living at

the time but my mother had already passed on. I do not know which of my parents

had the disease and I have not detected it in any of my cousins, aunts, uncles

or other relation. My brothers and sisters have not been diagnosed with

symptoms of CMT. I had to learn at a young age that I have one best friend who

will not laugh at me when I could't play ball or do things other children could

do. I had to be strong to face objects which were placed in front of me. I

still feel that I am a very strong willed person and even if my CMT gets worse I

will be able to bear what Is placed in front of me. I know that when and if I

have any surgeries and need anesthetics, they will make my legs weaker. Having

had a back surgery in May I now must use a walker to steady my self when I go

outside. But then last week I was also faced with having a gallbladder surgery.

I talked with the Drs. about the anesthetics and they did not affect me more

this time. I think I would feel more guilty if I would have done like some do

and kill my child through abortion. However that was not available when my son

was born. My son has also gone through a time of drinking and if a recovering

alcoholic, but as any of you know alcohol is a poison to a person with CMT, and

will affect our legs and muscles more than the normal person.

I know you said you feel that this is a punishment for some wrong that

you did when you were young, but may you be strengthened to know , as I was told

" The Lord will not give us more than we are able to bear. " Be strong and learn

that Jesus is you're best friend. He is there to help and listen to all our

troubles, He is a good listener and will not argue with you about how we feel

about our problems. Life does not promise anything to be easy, but when I see

someone who is complaining about their other types of problems, I feel they

could not handle what we have to deal withas a person who has CMT. God Luck

and May God Bless You thru your life.

Doris

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[Guest guest]

I'm not a psychologist or counselor. But I have done my time in a

therapist's office - it was explained to me that I was, as you

mention, carrying around my mother's guilt, that she had in effect

given it to me. And further that I needed to give it back to her,

because it wasn't mine! We did that in a therapeutic setting and it

was good!!

I've learned that my mother did the best she could - she didn't give

me a good role model and she left me with a lot of heart wounds, but

she gave me what she could give me. She couldn't give me what she did

not have to give.

I too did the best I could with my child. If I could have done better

I would have. But at the time I didn't have the skills. Thank God she

and I have a good relationship now!

Some of us have learned much through 12-step programs about dealing

with people. I recommend that approach. Al-Anon is great for the

" people " stuff.

I don't know if this helps, but I wish you the best.

Regards, Carolyn

> I find it funny that my Mother has no guilt at all. I was trying to

whine to

> her a little the other day and this was her responce. " The Lord

made you

> strong you can handle it " .. It made me mad when she said that.

Because she

> seems to think of me as strong does that mean it is easy?? Does she

think bad

> stuff happens only to strong people? I think NOT! She also started

to say

> something about I had something to learn from my problems. WHAT IS

THAT

> SUPOSED TO MEAN!

> After she said that to me I started to think about something that I

never

> thought about before. I am her daughter why dosen't she have any

guilt. Just

> about every parent has some of it. She dosen't have any at all. I

asked her

> why she didn't have guilt. She said because the Dr. told me it

wasen't my

> falt not to feel guilt. Now I have heard her say that before. A

LOT before.

> But this time I figured out what happens to me when she says it. I

feel like

> it's all on me. That if she can't feel bad then it must be my job

to carry it

> all. I am also wondering what she had to learn from having me as a

kid? What

> ever she ment by that remark... Anyone have any GOOD advice?

>

[Guest guest]

In a message dated 8/9/2000 1:50:57 PM US Eastern Standard Time,

jacee17@... writes:

<< That if she can't feel bad then it must be my job to carry it

all. I am also wondering what she had to learn from having me as a kid? What

ever she ment by that remark... Anyone have any GOOD advice?

>>

,

I understand where you are coming from. I had CMT when I was a teenager, but

wasn't diagnosed until my twenties. My mother said (when she found out it

had come from her genes) she wished she had never had children. I ended up

comforting her. I have three children, whom have CMT too. Sure I felt guilt

that they ended up with CMT because of me. I am 53 years old and have learned

that Guilt is no good for anyone. It is not constructive. You really don't

want her to feel guilty. What you are wanting is understanding and some

empathy. The cliche of going through bad things and we will become stronger

is something NO ONE wants to hear or experience. I can so relate to you on

this. I have gone through some horrendous experiences throughout my life.

From an ex with alcohol problems to financial disasters. CMT to cancer. BUT I

got through all of them and you know what? I am a VERY strong person and have

learned so much about myself and others because of it. I would often say,

" I've been through enough, I don't want to go through this " " I'm tired of

learning what I am suppose to learn. " People would point out others and their

hardships. I didn't want to hear about other peoples hardships....just cared

about mine.....lol

So there is so much truth to that old cliche. I learned instead of showing

any guilt to my children, to show them strength. I've tried to teach them by

my life rather by just words. , CMT is not the easiest thing to live

with, but don't let it live your life for you. Let us be the ones with the

understanding and empathy for you. We DO understand. Decide what you want

and go after it. Good luck and let us be there for you.

from IN.

[Guest guest]

Hello Everybody,

I felt a need to address this subject: My Mother was diagnosed with CMT

in 1980. At that time, we did not know much about it, and really didn't care

to know. My Mother had fallen many times before, so did I, and we just

thought we had inherited clumsiness. As the years went by, my daughter was

born, and we, my Mother and I learned more about CMT. I had my son in 1992,

knowing full well that I carried the gene, and that my child had a 50/50

chance of having CMT. My son now shows obvious signs of having CMT, and my

daughter now carries the gene. Up to this moment, I have never felt an ounce

of guilt over having him, or having my daughter. They are the loves of my

life and every morning I thank the Great One that I can spend one more day

with them, watching them grow, and helping them be all they can be. We don't

look at tomorrow, or waste time on yesterday. Will their future be any

different if I become consumed by guilt, or regret having them? You bet.

Their self esteem will decline, their outlook on life will suffer. I refuse

to do that to them. They are wonderful people and deserve all of mine and my

husbands attention, and love, without the burden of guilt, or self pity. I do

empathize with all the adults and children that didn't get the love, support

and understanding, when having to deal with CMT and the effects its had on

their lives. I guess the only advice I can give is if you have children, or

are thinking of having any in the future, don't waste your time on guilt,

just love your children every moment of everyday, and tell them everyday.

Help them grow to be loving, compassionate people. Much Love and Kindness to

all, Michele

[Guest guest]

Hi, Michele.

Thank you for warming my heart today! I think you have a wonderful

attitude and I'm sure your children feel it and know it in their

hearts too.

Warm regards, Carolyn

> Hello Everybody,

> I felt a need to address this subject: My Mother was diagnosed

with CMT

> in 1980. At that time, we did not know much about it, and really

didn't care

> to know. My Mother had fallen many times before, so did I, and we

just

> thought we had inherited clumsiness. As the years went by, my

daughter was

> born, and we, my Mother and I learned more about CMT. I had my son

in 1992,

> knowing full well that I carried the gene, and that my child had a

50/50

> chance of having CMT. My son now shows obvious signs of having CMT,

and my

> daughter now carries the gene. Up to this moment, I have never felt

an ounce

> of guilt over having him, or having my daughter. They are the loves

of my

> life and every morning I thank the Great One that I can spend one

more day

> with them, watching them grow, and helping them be all they can be.

We don't

> look at tomorrow, or waste time on yesterday. Will their future be

any

> different if I become consumed by guilt, or regret having them? You

bet.

> Their self esteem will decline, their outlook on life will suffer.

I refuse

> to do that to them. They are wonderful people and deserve all of

mine and my

> husbands attention, and love, without the burden of guilt, or self

pity. I do

> empathize with all the adults and children that didn't get the

love, support

> and understanding, when having to deal with CMT and the effects its

had on

> their lives. I guess the only advice I can give is if you have

children, or

> are thinking of having any in the future, don't waste your time on

guilt,

> just love your children every moment of everyday, and tell them

everyday.

> Help them grow to be loving, compassionate people. Much Love and

Kindness to

> all, Michele

[Guest guest]

Doris:

I appreciated your response to this subject. I was diagnosed with CMT 4

years ago. I already had 3 daughters and now have a son who's going to be 2

this month. I was upset with the " parent guilt " issue and my personal faith

is the same as your's " God won't give us more than we can handle. " So far

none of my children show any real signs of CMT. I would not have ever had

an abortion.. I am also adopted.

Thanks again for your response.

Jane

>From: " doris45 " <doris45@...>

>Reply-egroups

><egroups>

>Subject: Re: [] Parental guilt and lack of it

>Date: Wed, 9 Aug 2000 19:54:33 -0700

>

>

> -----Original Message-----

> From: jacee17@... <jacee17@...>

> egroups <egroups>

> Date: Wednesday, August 09, 2000 11:35 AM

> Subject: [] Parental guilt and lack of it

>

>

> I am a mother of a son who also has CMT. I do not feel guilty about

>giving birth to this child and to the fact that he has CMT. I was not

>diagnosed with CMT until my son was 20 years old and I was 45. My father

>was still living at the time but my mother had already passed on. I do not

>know which of my parents had the disease and I have not detected it in any

>of my cousins, aunts, uncles or other relation. My brothers and sisters

>have not been diagnosed with symptoms of CMT. I had to learn at a young

>age that I have one best friend who will not laugh at me when I could't

>play ball or do things other children could do. I had to be strong to face

>objects which were placed in front of me. I still feel that I am a very

>strong willed person and even if my CMT gets worse I will be able to bear

>what Is placed in front of me. I know that when and if I have any

>surgeries and need anesthetics, they will make my legs weaker. Having had

>a back surgery in May I now must use a walker to steady my self when I go

>outside. But then last week I was also faced with having a gallbladder

>surgery. I talked with the Drs. about the anesthetics and they did not

>affect me more this time. I think I would feel more guilty if I would have

>done like some do and kill my child through abortion. However that was not

>available when my son was born. My son has also gone through a time of

>drinking and if a recovering alcoholic, but as any of you know alcohol is a

>poison to a person with CMT, and will affect our legs and muscles more than

>the normal person.

> I know you said you feel that this is a punishment for some wrong

>that you did when you were young, but may you be strengthened to know , as

>I was told " The Lord will not give us more than we are able to bear. " Be

>strong and learn that Jesus is you're best friend. He is there to help and

>listen to all our troubles, He is a good listener and will not argue with

>you about how we feel about our problems. Life does not promise anything to

>be easy, but when I see someone who is complaining about their other types

>of problems, I feel they could not handle what we have to deal withas a

>person who has CMT. God Luck and May God Bless You thru your life.

> Doris

>

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>

>

>

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>

[Guest guest]

In a message dated 8/10/2000 11:47:48 AM Pacific Daylight Time,

flyingk@... writes:

<< , CMT is not the easiest thing to live

with, but don't let it live your life for you. Let us be the ones with the

understanding and empathy for you. We DO understand. Decide what you want

and go after it. Good luck and let us be there for you.

from IN. >>

Thank You , and everyone for your understanding and your words of

encouragement. It's hard being the family CMT pioneer.

[Guest guest]

Michele...

I had to say that I totally agree with your attitude! I am 35 years old,

don't have a husband or kids, though I am dating someone. I would have had

children if I had the opportunity in the past, even though I know there is a

chance of passing CMT to a child. You are right on target about not passing

on guilt towards your children, because my mother passed on more than guilt

to me. She is estranged from me now because of many things due to my

disability...I am the only one in my family who has CMT (Roussy-Levy type).

It is worse to pass on guilt or shame to a child than to pass on a

disability. What made my childhood even harder was the lack of support I

received from my family. If I had a mother who gave me support and love, the

CMT would have been a bit easier to deal with. My friend tells me that a

parent never really knows what the health of their child will be in the

future...she has two children, and is not disabled. She told me that I would

be a great mom, and that if I ever do decide to have a child, she supports

that decision. We both came from very dysfunctional families and know that

there are so many " able-bodied " parents who shouldn't have been parents. In

many ways, disabled people can pass on the best characteristics to their

children, such as compassion and understanding.

Kathy in Brooklyn

[Guest guest]

> Kathy in Brooklyn wrote: It is worse to pass on guilt or shame to a

child than to pass on a disability.

I just want to say Amen, Amen, Amen!!! Thanks, Kathy

Regards, Carolyn

[Guest guest]

> Kathy in Brooklyn wrote: It is worse to pass on guilt or shame to a

child than to pass on a disability.

I just want to say Amen, Amen, Amen!!! Thanks, Kathy

Regards, Carolyn