parents pushing CMT kids

[Guest guest]

louise, hi,

OK you know I was diagnosed with CMT as a kid and no one in my family

has/had it.

My mother, at first, about age 7-9 was really pushing me. Mom had a

very fast walk and was on my case constantly to keep up with her. (like at the

grocery store) I grew tired very easily and broke into tears, and I lacked the

emotional words to express my feelings. I just said " my feet hurt " .

After an early bedtime (7:30 pm), and good sleep, I woke early and

was apparently fine...it's just the fatigue issue hit me about 2 pm

everyday that I had school.

On a family vacation to the East Coast to see everything historic and

then to NYC, both my parents noticed I wasn't walking " right " .

(Rolling left foot out, and rolling right foot in - also to the

left) After that vacation and a few more falls trying to balance on

river stones while catching fish with Dad in Amherst, my parents

found a new orthopedist for me, and then I got the CMT diagnosis at age 10.

Once my Mom and Dad understood that my big issues related to CMT were

fatigue and balance, they tried their best to help me learn to slow

down, have naps (a bummer!) etc. Mom sort of nagged me on things, and

when I was on scout trips or sleepovers, I got so embarrassed,

because Mom would call the host mother and explain my " situation " .

Fortunately, none of my friends were hip to any of this, even my CMT

issues, and I did have a wonderfully happy childhood.

Dad never nagged, he was just always giving my love, attention,

sympathy, drying my tears and promising more Barbies, trips to

Disneyland and Hawaii He also taught me how to relax by deep breathing and

backwards counting, which I still use now in my meditation periods.

I never " played up " the CMT issue to get out of anything or get

attention. Matter of fact, being a " Dr. Spock baby " , I was spanked

when I was in trouble - lol, oh yes, I was rather naughty... you see, I had this

younger brother and I insisted on giving him a hard time lol

The only time I tried to " play up " being sick was trying to fake the

flu so I could get out of a math test - Mom had been a WW2 Navy nurse

and saw right through my 8 year old con job.

I believe that my parents just raised me like a non-CMT kid, very normal, I went

to school, ballet, piano lessons, summer camp, family gatherings, etc. It is my

feeling now, as an adult, that growing up " normal " and not having CMT be made a

major issue in my life, that has allowed me to develop into the woman I am

today. About 95% of the time I forget I have CMT. Oh sure, all it takes is one

trip over a dog bone burried in the grass or dropping a head of brocolli on the

kitchen floor to remind me... I just pretty much blow that off and keep on

keeping on for the other 5% of the time.

Just my 2 cents on the subject.

~ Gretchen

~ Gretchen