Avoiding CMT - I'm glad my parents didn't...

[Guest guest]

Greetings:

If my parents knew about the CMT and decided not to have

more children, I WOULDN " T BE HERE. I'm VERY glad, that is not the

case and I am not angry with them. How can I be? I'ts not as if

you have a choice of either being born with CMT, or healthy; if a

parent had it, and then you have it, the alternative, in the past,

would have simply to have not been born. Unless life is like a sci

fi film and you could just choose other parents, but then we still

wouldn't be ourselves as we know ourselves.

My childhood was NOT at all easy and did involve a lot of

suffering. In addition to the CMT, or more likely, as a result of

CMT, I was also born with cataracts in the days before laser

treatments. I was legally blind until I was seven or eight. I had

five eye operations during childhood; each necessitated a week or

more in the hospital and a month or more away from school. I had to

repeat a grade because of all the school I missed. I was not allowed

to participate in many activities in case I got " hit in the eye. And

then after the operations, I had coke bottle glasses until age 13. I

was picked on a lot and was very shy. I was not able to participate

in lots of activities other kids did. But I found activities that I

could do and have learned from this a great capacity for solitude.

When I was 13 I got contacts and my whole social world changed. I

had a fairly typical adolescence, including a few boyrfiends, until I

found out about the CMT, or back then the " neuropathy " (didn't know

it was CMT), at age 16 and got AFO's. Even after the CMT was

discovered, my adolescence was not all that different.

MY CMT symptoms today are comparatively mild (I wear

orthotics, have a pevus foot, hammer toes, balance problems, weakness

in hands - but can exercise regularly, work full-time and do most

everyday activities). My eye problems have basically been " cured "

by modern science; I had two operations a few years ago to implant

lenses so I don't even have to wear glasses or contacts anymore.

Anyway, I can say that the CMT did cause extra suffering in

my life but it also made me an extra strong person and helped me to

develop some great qualities I would not havehad without it. While

I often wish I could run for exercise or wear high heels, if I didn't

have CMT at all I might not be who I am character wise.

I am 33 and single and do not have any children as of yet.

I've done a lot of dating and had many close relationships that

lasted a long time but so far have not been married. For me, I've

decided that I would not purposely try to be a single parent as o0ne

of my older sisters has - she adopted a girl from Russia. If I do

get married though, I am not ruling out children. I will have to

weigh a lot of factors such as my age and my health at the time and

my/our schedules. While there is a 50% chance a child could have

CMT, there is also a chance that there will be a treatment or cure

for CMT say twenty years from now when a child of mine may be likely

to be showing signs. Even if there is no treatment or cure, I have

many skills and a lot of love to offer a child.

I'm a Clinical Social Worker and I work with lots of people

who have HORRIBLE parenting skills and this really hurts their

children in ways that are also incurable or nearly so. We can not

stop these people from having children because of their lack of

parenting skills and psychological problems. I, on the other hand,

have very good skills with children.

There is no " perfect " parent and no way to avoid suffering

in life. We can try to reduce suffering, but there are lots of

sources of it, genetic and otherwise, that have yet to be made

controllable. I don't want to knowingly cause suffering in a child

but I for one think that deciding to have a child, even without the

risk of CMT, is causing suffering as all of us suffer. It may not be

CMT it could instead be some sort of disfigurement caused by accident

or some other illlness we can't control or simply a quiet child that

gets picked on a lot.

Despite all that I've been through, I can still say that

I'm VERY glad to have been born.

Just my two cents.

Peace, Marti

[Guest guest]

Marti you sound like a wonderful woman,I am glad your here also!

Heidi

[Guest guest]

Everyone makes decisions that others can't understand. To have or not

to have children. That is a heavy decision. But, where does the

selective breeding process end. I don't like my hair color, do I not

have children because I don't want them to have brown hair? I don't

like my nose, do I get rid of the child in me because I am afraid it

will have my nose? Our bodies may not be right, our gene pool may not

be right, our lives may not be great sometimes. But, our minds and

our brains work just fine. My daughter may carry my genes, but she

also carries to the next generation all that I taught her. The love

of all people, the love of books, the love of music, the love of that

special person, humor, and and never letting that wall get in her

way. She also carries a good moral fiber. To parafraze the song 'I

hope you Dance " I know my daughter will never sit it out. SHE WILL

DANCE....Am I frightened for the health of then next generation. NO I

AM NOT. Because it is what we teach our children, and future

generations that counts. It is what is in their heads, not their

bodies.

> Marti you sound like a wonderful woman,I am glad your here also!

> Heidi

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