helping teens to deal with CMT

[Guest guest]

Hi Deborah and :

My son was diagnosed at 17. He is now 22. At first, he was angry

and just didn't want to talk about it even though he was scared out

of his wits. As I'm sure all of us have been like that when we

first started experiencing symptons. As the years have passed he is

learning to deal with the changes in his body and how they affect

his daily life. In the beginning, I would try to make him talk and

then we would both be upset because he would lash out which would

hurt me ( I am the one who passed him this gene), resulting in both

of us having guilty feelings. We both found that we needed someone

else to talk to about all of this and how scared we both were of

what was happening to him. I took solace in a good friend, he ended

up with his councelor at his college. It took him at least 3 years

before he could face what the physical reality meant to him. He had

been a great basketball player and had hoped to play college ball,

so not only was his body failing him but his biggest dream had a

huge hole in it. I felt horrible - I couldn't help him. But time,

which really is a great healer, has brought us to a place where now

he calls me when he is feeling a new symptom, when he is trying

something new to aid him or just when he's feeling a little blue

about the whole frustrating situation. Sometimes we both still get

upset and have even cried over this together. But most of the time,

we are able to talk like we do here at . We share our ideas,

compare what has happened to us both and prop each other up once in

awhile. That doesn't mean that it is over. There will always be

days for him, just like they are for me, that just plain suck! But

the good news is that as he is maturing into a young man, he is

learning that there is still a good life for him even with CMT.

Now, instead of a super hero on the court, he is majoring in

physical therapy in order to help others who are more disabled than

himself or maybe even a jock or two. And he's really loving his

studies. Anyway, my message here is to give your sons time. The

teenage years for a boy are hard all on their own. Their bodies are

changing in so many ways - everybody is flexing those new found

muscles, and then yours aren't quite working right! What a hard

place for a guy to be!! But, you both are good caring mothers who

are there for your sons and eventually they will come back to you

with all of this. That's the great thing about mothers and their

sons - it's a bond that is pretty special. So, keep them close to

your heart and try not to worry too much. They, like us, will work

through it all eventually. Actually, I'm still working to cope with

CMT everyday and I don't expect that it will ever stop until I am

gone from this earth. That is just part of CMT, everyday is

different and some are better than others. Really, I guess that is

just life. So, hang in there and just keep loving them like I know

you do and everyone will be ok in the end.