family CMT and being positive

February 27, 2007

Hi De:

I can only imagine the thoughts your husband was having when he realized he

probably hasn't missed the bullet. My experience was that I didn't see it

coming.

My dad had such a mild case of CMT that I never even gave it a thought and we

weren't close with his family so I didn't know about the family " affliction "

until after numerous doctor visits searching for answers, my folks decided to

level with me and reveal the deep dark secret.

I was so mad at them for so long.... I blamed them for

everything that came along. Then my oldest son, Luke, started

showing signs of CMT when he was 17 (I was about 30)and his anger was so painful

for me.

I felt so guilty - every time he cried I cried twice as hard and twice as long.

My husband was in denial about our son which made things even harder and my

youngest son (no signs of CMT yet, age 22 now) was also hurt by all of this. He

probably got neglected some, felt scared that he might be next, and even guilty

that it was his athletic brother instead of himself.

Well, it's been almost 7 years now for Luke and 18 for me. We are both doing

much better, although I won't lie and tell you that we are so well adjusted that

it never hurts us anymore or that we're glad we have CMT. Our whole family

suffers from the affects of this disease.

But, and here's the positive part, after awhile you realize that if

you don't try to be positive about CMT you only make things worse for yourself

and everyone around you. I hope your husband will get to that point faster than

we did because freaking out doesn't change the fact that you have something that

will probably alter your life -maybe a little or maybe alot.

So, in this long drawn out reply, my best advice to you and your husband is to

try to keep talking about it and facing it together. You won't be able to

always understand how he feels because you're not him, but gently remind him

that you're going through this too - with him. I promise he will need to be

reassured that you're not sorry you married him. I hope this helped.

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