just a note/children CMT

[Guest guest]

Hello Fellow CMTers,

Just a note of thanks and appreciation to Gretchen for all of her volunteerism

for this wonderful panel of discussion. I do not post often, however I read a

lot of what is happening with CMT. It is especially hard for people that

live in small communities as we say we have CMT and people look at us like we

have four heads and move back from us like they can catch it LOL. I want to

thank you Gretchen for everything you have been an inspiration and admirer of

mine for quite some time now. It is especially warming to know that you listen

to those of us in need of understanding our CMT. For some, it is a rather new

process, and with each process such as this grief comes with it and we must

individually work through it the best we know how. CMT is not easy, yet we can

not let it win. We must learn to understand our bodies and listen when we are

weak or tired physically and mentally.

Teaching others the tolerance of having a " disability " is the greatest lesson of

all of having CMT. I would not live my life differently if I had it to do over

again. To tell you the truth I would pick having CMT over any Learning

challenges. I have them both and would choose to keep my CMT and get rid of LD

if I had a choice. Interesting as it may sound it is my truth.

Putting your best foot forward each day is what life is about. Life is not about

giving in, it is about advocating, enjoying and accepting who we are on the

inside.

I do my best to educate others about CMT, especially the school system as

I have children that have IEP's that have been written especially for them

for their physical challenge and labeled as OHI (other health impaired). Yes,

labeling is difficult, but this is the only way for society and the school to

wake up and pay attention to these children. It is a tough road, yet parents are

the best advocates as long as they keep at it.

Never surrender to the schools - you know your children best.

Thank you,

Heidi