Having Children

[Guest guest]

HI , I have had 5 babies. I was in my 20's. I felt great with every

pregnancy. My back went out with 1 baby. The last month I was very heavy and

didn't do much walking. I had an epidural with 2 of them. One went great the

other was to strong put my whole body to sleep. I hated that. After all of

them I did have depression and my hands hurt from all the baby lifting. That

lasted about 5 or 6 weeks.

The best advice I can give you is don't think you won't have a child with CMT

think you may have a child with CMT.

I do not know if I would do it again 5 times but once for sure.

In a message dated 7/22/2000 10:56:56 AM Pacific Daylight Time, st@...

writes:

<< I am 28 years old and I would like to have a child. What do I have to

expect during

pregnancy. I know, Kathleen told me a few months ago that there are

women who

needed a wheelchair because of the fact they were pregnant. But I guess

this is the

worst case. What did you experience? And was it a question for you

wheter having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you

take medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

>>

[Guest guest]

I had two children within a year. June 83 and Dan May 84. At the time I

didn't know I had CMT so consequently wasn't on any medication. I sailed through

both my pregnancies but I did find that after about 28 weeks I couldn't hardly

walk and standing etc was very painful. I also delivered earlier. at 34

weeks and Dan at 36 weeks.

I had another son in 91 again I was fine, except for the walking and the

pain.

I've been reading the messages with interest regarding having children and

the risks of passing CMT on to them. My father only found out earlier this month

for definite that he had something wrong and that it's CMT (he's has it very

mildly and is 61 now) and that he passed it on to me. He was naturally upset

about it but sadly he said he'd wished he'd never been born.

Okay, so yes I got from him. I've had it all my life and have been disabled

and in pain with it, but I've had up till now a damn good life and one that I've

lived to the full. It hasn't been easy in any way with divorce, children,

violent partner and working up to 18 hrs a day to pay for the kids and the house

whilst on my own. And yes, to be honest looking back there are parts that given

the chance I would change but you know, if I could change those parts I wouldn't

be me.

I walked for 37 years, I've done things I shouldn't have done, but now what

I have to do is change my lifestyle. At times I feel as if I'm fighting for my

life, my identity because of what has happened, so quickly and so recently but I

certainly have never wished I hadn't be born. Now I'm a mother, I adore my kids

and yes I cry when they hurt and I wish I hadn't given it to them but it

happened and now, we work things out together, so that they'll have a good and

fruitful life. Hey I want grandkids... someday

Sue

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

From: Theyskens

egroups

Sent: Saturday, July 22, 2000 6:47 PM

Subject: [] Having children

Hi everyone,

I have got a question to those of you who have cmt and have decided to

have children:

I am 28 years old and I would like to have a child. What do I have to

expect during

pregnancy. I know, Kathleen told me a few months ago that there are

women who

needed a wheelchair because of the fact they were pregnant. But I guess

this is the

worst case. What did you experience? And was it a question for you

wheter having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you

take medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

--------------------------------------------------------------------------------

--------------------------------------------------------------------------------

[Guest guest]

I had my two children before I knew I had CMT. Both pregnancies were very

easy however my doctor has advised me that now with the CMT so bad that

another pregnancy would not be advised. My sister who also has CMT but

not as bad as me had a baby 18 months ago and had no problems with the

pregnancy or birth although she finds looking after the baby difficult--lifting,

pushing the pram etc. her husband helps out a lot.

On the subject of passing on CMT, Neither of my parents have CMT and yet

3 of their 4 children have it. They found it very difficult to come to terms

with

the fact that we have a serious genetic condition. I am currently waiting to

have my eldest child tested as she is showing early signs but I can accept it

easier than my parents because I know what CMT is and can help my

daughter whereas my parents knew nothing about it only what doctors told

them, and that was usually far from right! Everyone passes on genetic things

to their children and if people were to think about it noone would risk having s

child! CMT is bad but not the worst thing that could happen.

Joyce

[Guest guest]

I had my two children before I knew I had CMT. Both pregnancies were very

easy however my doctor has advised me that now with the CMT so bad that

another pregnancy would not be advised. My sister who also has CMT but

not as bad as me had a baby 18 months ago and had no problems with the

pregnancy or birth although she finds looking after the baby difficult--lifting,

pushing the pram etc. her husband helps out a lot.

On the subject of passing on CMT, Neither of my parents have CMT and yet

3 of their 4 children have it. They found it very difficult to come to terms

with

the fact that we have a serious genetic condition. I am currently waiting to

have my eldest child tested as she is showing early signs but I can accept it

easier than my parents because I know what CMT is and can help my

daughter whereas my parents knew nothing about it only what doctors told

them, and that was usually far from right! Everyone passes on genetic things

to their children and if people were to think about it noone would risk having s

child! CMT is bad but not the worst thing that could happen.

Joyce

[Guest guest]

My father passed on, as well as CMT, a wicked sense of humour, a determination

to achieve, a love of life and the knowledge that I can do anything. He also

passed on a love of the arts - he paints, I write but our artistic side totally

understand each other. Suddenly CMT doesn't seem quite so important. He also

encouraged me in all sorts of things but most importantly just to be me.

Sue

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

From: Joyce

egroups

Sent: Sunday, July 23, 2000 2:32 AM

Subject: [] Re: Having Children

I had my two children before I knew I had CMT. Both pregnancies were very

easy however my doctor has advised me that now with the CMT so bad that

another pregnancy would not be advised. My sister who also has CMT but

not as bad as me had a baby 18 months ago and had no problems with the

pregnancy or birth although she finds looking after the baby difficult--lifting,

pushing the pram etc. her husband helps out a lot.

On the subject of passing on CMT, Neither of my parents have CMT and yet

3 of their 4 children have it. They found it very difficult to come to terms

with

the fact that we have a serious genetic condition. I am currently waiting to

have my eldest child tested as she is showing early signs but I can accept it

easier than my parents because I know what CMT is and can help my

daughter whereas my parents knew nothing about it only what doctors told

them, and that was usually far from right! Everyone passes on genetic things

to their children and if people were to think about it noone would risk having s

child! CMT is bad but not the worst thing that could happen.

Joyce

--------------------------------------------------------------------------------

--------------------------------------------------------------------------------

[Guest guest]

, when ever I was considering getting married my fiance and I talked

about children. At that time I knew there was a 50/50 chance of my children

having CMT.

I had decided that my grandpa, dad and myself was doing just fine with having

CMT so I wasn't too concerned.

We had 2 yrs after we were married. During the pregnancy I had

horrible morning sickness for about 2 months. In my 7th month I stated

havng a sinsation of a pinched nerve in my spin. The doctors could never

find anything wrong. However when this nerve (or whatever) go pinched (or

whatever) I would loose my legs for a split second. Back then I had alot

better abilities for walking and standing and keeping my balance, so I never

actually hit the floor thank goodness. In my 9th month however it got worse

and I could never walk alone. Someone was always by my side.... The same

thing happened with my second pregnancy 3 years later.

With each pregnancy my legs did get weaker and I was more fatigued. At times

I could keep up with my daughter. But she was never allowed very far from me

since I couldn't run or move fast.

She learned to hug my body when ever I carried her so that my balance was

stable.

Oh, I guess I should tell you that in my family history I had a second cousin

that during childbirth was paralysed from the waste down for 6 months. The

doctors said it was becasue of the CMT. (nerves). I didn't know about this

until I was already pregnant with my son.

My hubby and I decided to adopt the rest of our children. So I had my tubes

tied.

We do have one adoted son (Jon).

CMT with kids growing up:

I think this is the hardest thing. It's very hard on the kids and it's hard

on me to see it affect them. My daughter does not show any signs of CMT.

(she only has week Knees). Mayby if had CMT it wouldn't have been so

hard on her.

She hates my CMT, she hates me for giving birth to her because of the CMT.

She hates the thought that she might have the gene and might pass on CMT if

she had children. The kids hate having to help me with housework because my

legs won't last. They hate having to wait for me. They hate that I can't do

thier car-pool or go on field trips with them like other moms.

I have problems with this also. I wish I could do those things, but the

fatigue can really be bad.

I wish I had known my great grandmother who had CMT.... Maybe then I would've

decided not to have children - but to adopt.

Apparently my great grandma raised her kids from a chair that she scooted

around on in the house. After she wore down the wood legs she would get

another chair.

I know that's there's going to be moms out there that disagree with this and

think that I'm not good.

BUT, I wish I had made the decision not to have children at all. I see the

pain that my selfishness has caused.... I'm not getting better... I'm getting

worse.....

I know that some moms with CMT do just fine.... I wish I had been one of

them... My kids shouldn't have to take care of themselves and me..... I

should be taking care of them..... But, I can't.....

Oh yes, I was not on any medications when I was pregnant at all.

Jeanie

In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

writes:

> >Hi everyone,

I have got a question to those of you who have cmt and have decided to have

children:

I am 28 years old and I would like to have a child. What do I have to expect

during

pregnancy. I know, Kathleen told me a few months ago that there are women who

needed a wheelchair because of the fact they were pregnant. But I guess this

is the

worst case. What did you experience? And was it a question for you wheter

having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you take

medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

>>

[Guest guest]

Hi sandra, I have 3 children, I found out as a small child that I

have cmt and when I was 20 I had first child who is 6 now. I didnt

have any pain caused from the cmt with her or with other 2 babies

which were born in June of 98 and May of 99. I have however noticed

that my cmt has gotten worse since having my last child. Yes, my legs

were weaker when I was pregnant, but no pain and no medication. I

delivered all three of them just fine and they were all full term. I

had no problem with pushing them out as suggested in some of the

things i read about cmt and delivery. I havent had any real pain with

my cmt at all just weakness and frustation. if you have any question

for me you can email me at coyote6598@... put cmt in the

subject line please. Jeanne age 26

> I had two children within a year. June 83 and Dan May 84. At

the time I didn't know I had CMT so consequently wasn't on any

medication. I sailed through both my pregnancies but I did find that

after about 28 weeks I couldn't hardly walk and standing etc was very

painful. I also delivered earlier. at 34 weeks and Dan at 36

weeks.

> I had another son in 91 again I was fine, except for the

walking and the pain.

> I've been reading the messages with interest regarding having

children and the risks of passing CMT on to them. My father only

found out earlier this month for definite that he had something wrong

and that it's CMT (he's has it very mildly and is 61 now) and that he

passed it on to me. He was naturally upset about it but sadly he said

he'd wished he'd never been born.

> Okay, so yes I got from him. I've had it all my life and have

been disabled and in pain with it, but I've had up till now a damn

good life and one that I've lived to the full. It hasn't been easy in

any way with divorce, children, violent partner and working up to 18

hrs a day to pay for the kids and the house whilst on my own. And

yes, to be honest looking back there are parts that given the chance

I would change but you know, if I could change those parts I wouldn't

be me.

> I walked for 37 years, I've done things I shouldn't have done,

but now what I have to do is change my lifestyle. At times I feel as

if I'm fighting for my life, my identity because of what has

happened, so quickly and so recently but I certainly have never

wished I hadn't be born. Now I'm a mother, I adore my kids and yes I

cry when they hurt and I wish I hadn't given it to them but it

happened and now, we work things out together, so that they'll have a

good and fruitful life. Hey I want grandkids... someday

> Sue

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

> From: Theyskens

> egroups

> Sent: Saturday, July 22, 2000 6:47 PM

> Subject: [] Having children

>

>

> Hi everyone,

>

> I have got a question to those of you who have cmt and have decided

to

> have children:

>

> I am 28 years old and I would like to have a child. What do I have

to

> expect during

> pregnancy. I know, Kathleen told me a few months ago that there are

> women who

> needed a wheelchair because of the fact they were pregnant. But I

guess

> this is the

> worst case. What did you experience? And was it a question for you

> wheter having

> children or not? How old were you when you had your child? What

happened

> during

> pregnancy, did you have pain (I mean if you had pain before)? Did

you

> take medicine

> like anti-depressants (prozac or so)?

>

> Thanks for your help.

>

> Best wishes from Germany,

>

>

>

> --------------------------------------------------------------------

------------

>

>

>

> --------------------------------------------------------------------

------------

>

[Guest guest]

Jeannie I wish I could hold you in my arms and give you a great big hug. (Might

knock you out with the metal in my wrist braces but never mind)

My two eldest sons if they're home first have to start preparing dinner, if

not my husband does it when he comes home. My three sons help with the

housework, in fact everyone in this family has to muck in. My three kids hate

CMT, my two eldest particularly because they have it too. They hate seeing their

Mum in pain and seriously disabled as does my husband.

But... you may very well hate me for this but I've got to say it. You ask

your kids what would they prefer. A mother who is abled bodied and doesn't need

their help but who may well be horribly cruel and hate them or a mother who is

disabled but loves and adores them and does everything she possibly can do for

them. I know what I would prefer. I think your kids are very lucky for having

such a wonderful, caring Mum and I hope soon they will realise exactly what a

treasure they have.

Much love and many hugs

Sue

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

From: Moonglow21@...

egroups

Sent: Sunday, July 23, 2000 9:59 AM

Subject: Re: [] Having children

, when ever I was considering getting married my fiance and I talked

about children. At that time I knew there was a 50/50 chance of my children

having CMT.

I had decided that my grandpa, dad and myself was doing just fine with having

CMT so I wasn't too concerned.

We had 2 yrs after we were married. During the pregnancy I had

horrible morning sickness for about 2 months. In my 7th month I stated

havng a sinsation of a pinched nerve in my spin. The doctors could never

find anything wrong. However when this nerve (or whatever) go pinched (or

whatever) I would loose my legs for a split second. Back then I had alot

better abilities for walking and standing and keeping my balance, so I never

actually hit the floor thank goodness. In my 9th month however it got worse

and I could never walk alone. Someone was always by my side.... The same

thing happened with my second pregnancy 3 years later.

With each pregnancy my legs did get weaker and I was more fatigued. At times

I could keep up with my daughter. But she was never allowed very far from me

since I couldn't run or move fast.

She learned to hug my body when ever I carried her so that my balance was

stable.

Oh, I guess I should tell you that in my family history I had a second cousin

that during childbirth was paralysed from the waste down for 6 months. The

doctors said it was becasue of the CMT. (nerves). I didn't know about this

until I was already pregnant with my son.

My hubby and I decided to adopt the rest of our children. So I had my tubes

tied.

We do have one adoted son (Jon).

CMT with kids growing up:

I think this is the hardest thing. It's very hard on the kids and it's hard

on me to see it affect them. My daughter does not show any signs of CMT.

(she only has week Knees). Mayby if had CMT it wouldn't have been so

hard on her.

She hates my CMT, she hates me for giving birth to her because of the CMT.

She hates the thought that she might have the gene and might pass on CMT if

she had children. The kids hate having to help me with housework because my

legs won't last. They hate having to wait for me. They hate that I can't do

thier car-pool or go on field trips with them like other moms.

I have problems with this also. I wish I could do those things, but the

fatigue can really be bad.

I wish I had known my great grandmother who had CMT.... Maybe then I would've

decided not to have children - but to adopt.

Apparently my great grandma raised her kids from a chair that she scooted

around on in the house. After she wore down the wood legs she would get

another chair.

I know that's there's going to be moms out there that disagree with this and

think that I'm not good.

BUT, I wish I had made the decision not to have children at all. I see the

pain that my selfishness has caused.... I'm not getting better... I'm getting

worse.....

I know that some moms with CMT do just fine.... I wish I had been one of

them... My kids shouldn't have to take care of themselves and me..... I

should be taking care of them..... But, I can't.....

Oh yes, I was not on any medications when I was pregnant at all.

Jeanie

In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

writes:

> >Hi everyone,

I have got a question to those of you who have cmt and have decided to have

children:

I am 28 years old and I would like to have a child. What do I have to expect

during

pregnancy. I know, Kathleen told me a few months ago that there are women who

needed a wheelchair because of the fact they were pregnant. But I guess this

is the

worst case. What did you experience? And was it a question for you wheter

having

children or not? How old were you when you had your child? What happened

during

pregnancy, did you have pain (I mean if you had pain before)? Did you take

medicine

like anti-depressants (prozac or so)?

Thanks for your help.

Best wishes from Germany,

>>

--------------------------------------------------------------------------------

--------------------------------------------------------------------------------

[Guest guest]

In a message dated 7/23/2000 2:22:56 AM Pacific Daylight Time,

coyote6598@... writes:

<< I

had no problem with pushing them out as suggested in some of the

things i read about cmt and delivery. I havent had any real pain with

my cmt at all just weakness and frustation. if you have any question

for me you can email me at coyote6598@... put cmt in the

subject line please. Jeanne age 26 >>

Same here only a few pushes and they were out. My biggest was the easiest. 8

pounds 3 oz only 2 pushes. The rest of the babies took about 5 pushes.

[Guest guest]

In a message dated 7/23/2000 2:00:53 AM Pacific Daylight Time,

Moonglow21@... writes:

<< I know that's there's going to be moms out there that disagree with this

and

think that I'm not good.

BUT, I wish I had made the decision not to have children at all. I see the

pain that my selfishness has caused.... I'm not getting better... I'm

getting

worse.....

I know that some moms with CMT do just fine.... I wish I had been one of

them... My kids shouldn't have to take care of themselves and me..... I

should be taking care of them..... But, I can't.....

Oh yes, I was not on any medications when I was pregnant at all.

Jeanie >>

Jeanie, I think I speak for all of us when I say we are not here to judge you

for your feelings. I have days when I feel like I made a very very bad

decision. I have other days that go OK and I am think I made the right

decision. I have to think of my decision as an eternal plan and not just

this life. Eternally I made the right choice but that is not easy for this

life.

[Guest guest]

I have 3, a son now 35, a daughter 33, a daughter 20 I didn't know I

had CMT until 1994. I did know I had what the Dr. called poly-neurtis

ayear before I had my 20 yr.old.MY 33 yr old has CMT but very mild she

has a 6 yr. old boy who so far is fine she is now pregnant again. I did

great on all except I lost feeling in my hands when I was about 7mo.

with my last it lasted for about 3mos. So far I have a happy story. What

the future holds noone knows my children are the most important thing in

my life. I also raised 2 stepsons that are like my own.. ;)

[Guest guest]

In regards to having children! I was told that I had CMT at the age of 17,

I'm now 51. I was never told the whole story about CMT and the changes it

would have on me physically or if having children - what the chances that

they to would have CMT. I have 3 great kids. They are 31+, 30, and 23 now.

While they were growing up they helped me a lot and still do. My experience

has been (over all) positive in raising our kids. From the beginning when I

found out that I had CMT, I made a decission not to let CMT control my life

or my outlook on life. My family has been very supportive and our children

have a compassion for other people because they grew up with a parent with a

disability. Our 31 yr old daughter works in the medical field, the 30 yr son

works with disable Vets, and our 23 yr old son is in the Military right now.

With anything we do, whether it is to raise a family or day to day living,

it's how you look at whether your glass is half full or half empty! Kathy

R.

>From: Moonglow21@...

>Reply-egroups

>egroups

>Subject: Re: [] Having children

>Date: Sun, 23 Jul 2000 04:59:29 EDT

>

>, when ever I was considering getting married my fiancé and I talked

>about children. At that time I knew there was a 50/50 chance of my children

>having CMT.

>I had decided that my grandpa, dad and myself was doing just fine with

>having

>CMT so I wasn't too concerned.

>We had 2 yrs after we were married. During the pregnancy I had

>horrible morning sickness for about 2 months. In my 7th month I stated

>having a sensation of a pinched nerve in my spin. The doctors could never

>find anything wrong. However when this nerve (or whatever) go pinched (or

>whatever) I would loose my legs for a split second. Back then I had alot

>better abilities for walking and standing and keeping my balance, so I

>never

>actually hit the floor thank goodness. In my 9th month however it got worse

>and I could never walk alone. Someone was always by my side.... The same

>thing happened with my second pregnancy 3 years later.

>With each pregnancy my legs did get weaker and I was more fatigued. At

>times

>I could keep up with my daughter. But she was never allowed very far from

>me

>since I couldn't run or move fast.

>She learned to hug my body when ever I carried her so that my balance was

>stable.

>Oh, I guess I should tell you that in my family history I had a second

>cousin

>that during childbirth was paralyzed from the waste down for 6 months. The

>doctors said it was becasue of the CMT. (nerves). I didn't know about this

>until I was already pregnant with my son.

>My hubby and I decided to adopt the rest of our children. So I had my tubes

>tied.

>We do have one adopted son (Jon).

>CMT with kids growing up:

>I think this is the hardest thing. It's very hard on the kids and it's

>hard

>on me to see it affect them. My daughter does not show any signs of CMT.

>(she only has week Knees). Maybe if had CMT it wouldn't have been

>so

>hard on her.

>She hates my CMT, she hates me for giving birth to her because of the CMT.

>She hates the thought that she might have the gene and might pass on CMT if

>she had children. The kids hate having to help me with housework because

>my

>legs won't last. They hate having to wait for me. They hate that I can't

>do

>their car-pool or go on field trips with them like other moms.

>I have problems with this also. I wish I could do those things, but the

>fatigue can really be bad.

>I wish I had known my great grandmother who had CMT.... Maybe then I

>would've

>decided not to have children - but to adopt.

>Apparently my great grandma raised her kids from a chair that she scooted

>around on in the house. After she wore down the wood legs she would get

>another chair.

>I know that's there's going to be moms out there that disagree with this

>and

>think that I'm not good.

>BUT, I wish I had made the decision not to have children at all. I see the

>pain that my selfishness has caused.... I'm not getting better... I'm

>getting

>worse.....

>I know that some moms with CMT do just fine.... I wish I had been one of

>them... My kids shouldn't have to take care of themselves and me..... I

>should be taking care of them..... But, I can't.....

>Oh yes, I was not on any medications when I was pregnant at all.

>Jeanie

>

>In a message dated 7/22/00 10:57:38 AM Pacific Daylight Time, st@...

>writes:

> > >Hi everyone,

>I have got a question to those of you who have cmt and have decided to have

>children:

>I am 28 years old and I would like to have a child. What do I have to

>expect

>during

>pregnancy. I know, Kathleen told me a few months ago that there are women

>who

>needed a wheelchair because of the fact they were pregnant. But I guess

>this

>is the

>worst case. What did you experience? And was it a question for you whether

>having

>children or not? How old were you when you had your child? What happened

>during

>pregnancy, did you have pain (I mean if you had pain before)? Did you take

>medicine

>like anti-depressants (prozac or so)?

>Thanks for your help.

>Best wishes from Germany,

>>>

>

________________________________________________________________________

Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com

[Guest guest]

In a message dated 24/07/00 09:45:52 a.m. Pacific Daylight Time,

novanest@... writes:

<< My family has been very supportive and our children

have a compassion for other people because they grew up with a parent with a

disability. Our 31 yr old daughter works in the medical field, the 30 yr son

works with disable Vets, and our 23 yr old son is in the Military right now.

With anything we do, whether it is to raise a family or day to day living,

it's how you look at whether your glass is half full or half empty! Kathy

R. >>

Kathy did any of your children get CMT?

jenny

[Guest guest]

Hi ,

I had planned on having only one child and I did at age 33. My pregnancy

was easy. I even had surgery on an ankle in the 2nd trimester and was in a

walking cast for 3 months. I did not notice that it affected my leg

strength, but I gave birth at 33 weeks, so I did not experience being full

term. My water broke due to a strep infection, I was hospitalized and given

medication to prevent labor, but it came anyway after 4 days, so fast that I

couldn't be given any pain medication - ouch! My son was healthy and

weighed 4 pounds. Sometimes I think Providence was at work because he was

so easy for me to lift and carry until he got bigger. I also took care of a

friend's baby at the same time for some income while I stayed home.

Once kid's start moving around, then it gets harder and you have to think

ahead and take precautions. My son learned to come to me when he fell or

something, rather than waiting for me to come to him. I used a wrist

'leash' when we went out, or I wouldn't take him at all and let Dad watch

him. He does not have CMT and is now 12 years old. He has been a blessing

to me - is very understanding (most of the time) and helpful to me. I feel

he has learned a lesson that many people will never learn - how to be

considerate to those who have difficulties. He is impatient and says 'no'

sometimes, but he is also a pre-teen and I think that is natural. We have a

wonderful relationship.

My old orthopedist consulted with neurologists and told me my CMT was most

likely recessive, however, when my son was born I was told by the hospital

genetics dept. it was dominant - that was upsetting. I have not had any

testing.

I knew for sure that I would have no more children both for that reason and

after all the work with one, I didn't think I wanted to do it again. It's a

joy, but it's tiring.

That's enough. Hope that helps.

Melody

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

From: Theyskens <st@...>

<egroups>

Sent: Saturday, July 22, 2000 10:47 AM

Subject: [] Having children

> Hi everyone,

>

> I have got a question to those of you who have cmt and have decided to

> have children:

>

> I am 28 years old and I would like to have a child. What do I have to

> expect during

> pregnancy. I know, Kathleen told me a few months ago that there are

> women who

> needed a wheelchair because of the fact they were pregnant. But I guess

> this is the

> worst case. What did you experience? And was it a question for you

> wheter having

> children or not? How old were you when you had your child? What happened

> during

> pregnancy, did you have pain (I mean if you had pain before)? Did you

> take medicine

> like anti-depressants (prozac or so)?

>

> Thanks for your help.

>

> Best wishes from Germany,

>

>

>

> ------------------------------------------------------------------------

> Old school buds here:

> 1/7081/13/_/616793/_/964288217/

> ------------------------------------------------------------------------

>

>

[Guest guest]

Moonglo I dont know what to say to you but I want you to understand that

there are those who care . Do you have a pastor? There are caring church

groups somewhere for you or community support groups.I will think of you

often.I hesitate to say I will pray because it sounds so pompous or something

and you may not wish it but I do care.All of us have days when it seems hard

to go on but we must. Your kids need you as much as you need them tho they

will never say so.They also suffer for you and cant express it.Trust. Gwen

[Guest guest]

Jeannie,

Hi heart is breaking for you. You know kids can be a great joy ANd a great

source of heartache. I truly believe than can pick up that " thing " that most

irritates us and " work it " when they want. I wonder if they just pick on the

CMT and if you did not have that, it might be something else. I will be

praying for you.

a

PS Did you see, got on and wrote a response. She was watching me go

through me E mail and she said " let me respond to that on OK? " Whoa, is this

the same kid who left our support group in May?

[Guest guest]

I hope your daughter and your husband are drinking lots of ice water ... they

are going to need it, where they are going ...

[Guest guest]

Oh , I soooo agree... Michele

[Guest guest]

Thanks, Michele ...

Did you see Bob's post ... ??? I love good, clear thinking like that. Thanks

again Bob.

[Guest guest]

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

From: mikerobertac@... <mikerobertac@...>

egroups <egroups>

Date: Tuesday, July 25, 2000 7:12 PM

Subject: Re: [] Having children

>Jeannie,

>

>Hi heart is breaking for you.

>>>> Mine too. I went through this last year with my then 16 year old son.

He is a changed person now, he helps me with everyting now. I found out

through lots of questions/talks, that he had such a fear of himself having

CMT!!!! When I was diagnosed, he started working out, to the extremes.

Since his little brother was diagnosed and after much talking his fears are

less. And his attitude is great. He is a changed kid. Maybe your daughter

is holding in fears of this happening to her? She resents the CMT, resents

your having it, resents the knowledge that she may some day have it too and

its just too many fears for her to handle? Have you talked with her about

the chances of her having it? Wish I could help more, but just know your

not alone, ~>Becky M.

[Guest guest]

In a message dated 7/25/00 5:10:11 PM Pacific Daylight Time,

Pepperbrammer@... writes:

> Moonglo I dont know what to say to you but I want you to understand that

> there are those who care . Do you have a pastor?

****************************

Gwen, thank-you for your thought's. I am not against prayer at all, but I

certainly what to thankyou that you didn't say something like. I'll pray and

know it will be O.K..... As I've learned with being a preachers daughter,

some things are mean't to be.... I just wish God would realize that I'm not

as strong as he thinks I am. LOL

I know one day things will be better for me. SOme days my kids are there for

me thru thick and thin.... I'm just not strong enoough nerve wise to deal

with the bad times.

Thank-you and God Bless..... Jeanie

[Guest guest]

In a message dated 7/25/00 5:44:46 PM Pacific Daylight Time, rmax@...

writes:

> Maybe your daughter is holding in fears of this happening to her? She

resents the CMT, resents your having it, resents the knowledge that she may

some day have it too and its just too many fears for her to handle? Have

you talked with her about

the chances of her having it? >>

****************

Yes, this is a big part of it..... she is very afraid of the CMT. I have

talked with many times about CMT and the possibilities of her having

it or being a carrier or both. The whole thing upsets her horribly..... I

understand that.....

I have tried to be there for her. is very strong headed and will

only listen if she wants. I've learned over time that if I like something I

tell her I don't, otherwise if I tell her I like it she will hate it....

It's always the opposite of what mom says, thinks, feels, she's been this way

since she was very young.... And it's always driven me crazy.... LOL

Thank-you for your thoughts and encouragement.

jeanie

[Guest guest]

In a message dated 7/25/00 5:43:04 PM Pacific Daylight Time,

oregonpapa@... writes:

> I hope your daughter and your husband are drinking lots of ice water ...

they are > going to need it, where they are going ...

>

*************

Hopefully they will both change before that time comes and be more

responsible for thier actions.

I know that when I wsa still able to get around and my daughter was shorter I

still had control of her and she paid the consequences even if her dad didn't

get involved. I'm the disiplinarian (SP) in our family. My husband just looks

at me and doesn't know what to do.

After I told my hubby what had said to me and how she acted he

didn't say or do anything. However, the next day when asked him if

she could go out with a friend he talked to her about what she had done and

said. She did come in and apologize to me and I accepted and told her it

couldn't happen again PERIOD.... But yet...... (I have a rule with

.... She's not allowed to go anywhere if her dishes and room aren't

done.... even if her ride is there).... Well, her ride came and her room was

clean but the counter was a mess. I ;ooked at her and said the

dishes... She said, dad said I needed to TRY to get them done.... So I got

on Bill's case and told him that that was not acceptable....

Jon my son wasn't allowed to play with friends ALL DAY becasue of his

attitude... But yet he let her off the hook...

I think this is why I am alwayss sick and stressed out... I have no way to

actually make her do anything because I don't have the support behind me....

Her dad could say no and stand up to her.... She wouldn't dare say anything

to himmmmm. She knows he would bean her.... like she should be beaned,. like

she should've when she said it to me.... So I feel unimportant to my

hubby.... I know I shouldn't... But it says to me that he doesn't care how

I'm treated. CMT or not. Know what I'm saying....

Anyway, sorry I went on. Jeanie

[Guest guest]

In a message dated 7/25/00 5:27:22 PM Pacific Daylight Time,

mikerobertac@... writes:

> I will be praying for you.

> a

> PS Did you see, got on and wrote a response. She was watching me go

> through me E mail and she said " let me respond to that on OK? " Whoa, is

this

> the same kid who left our support group in May?

***************

Thank-you, and yes I did notice that did a post.... I was very

excited that she got involved and very thankfull.....

Jeanie

[Guest guest]

Dearest Jeanie,

I have been reading your postings and my heart swells for you. I know I

don't know you personally, although I would like to, and I won't give you

parenting advice, answers for your husband, but I will tell you, YOU ARE A

WORTHWHILE, BEAUTIFUL PERSON, and YOU ARE IMPORTANT. Your imput in this

group, your wise advice, your general compassion for the people in this

group, even though you don't know them, does you credit. It doesn't matter

what anyone else thinks of you, including your children and your husband. I

read many years ago and have lived by it, that if you love yourself, make

sure everybody knows this, and those around you can't help but love you back.

Please don't be so hard on yourself and know that I and I'm sure 99% of the

people in this group are rooting for you. So please try and relax, get the

help that YOU need to make YOU feel good. Loving Kindness and Compassion be

with you always, Michele