kids need to be kids

[Guest guest]

I agree with you. Kids need to be kids. If you baby a kid so much due

to his/her CMT, you will take away much of the joy of being a kid. Let them do

what they can do. Concentrate on what they can do and not what they can't. You'd

be surprised what they can do sometimes. Kids need to be up and active not

riding around in power scooters meant for older adults. Even if a kid is wearing

AFOs or braces there is much that they can do whether it's riding a bike or

playing with their friends.

Bob

[Guest guest]

I agree with this - but it still does not stop me from doubting if I should

have kids or not, should opt from PIGD (IVF with a screening for CMT) or

other totally insane worries.

I grew up knowing I could not run fast and was not the greatest at throwing

a ball. But I loved swimming and biking, roller skated all the time until I

popped my knees out of joint, and in general was just like everyone else. I

was not stopped from doing things by my parents - but due to their working

shifts, I did not participate a lot in team sports. This is the only regret

I have - I would have loved to be on the swim team, or paddling team, but it

was not to be...

I would encourage anyone to just let kids experience life, to be there to

pick them up again, and to help them excel at what they are good at. Limit

setting - in my opinion - should not happen until we know what we can /

can't do and even then " can't do " is most like " can do but with some

adaption or assistance " .

Best wishes from London,

Donna

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[Guest guest]

Amen Donna!

My son rode bikes, rode scooters, played basketball and all that fun

kid stuff from ages 4-9. At 9 his CMT advanced more dramatically

than the doctors could believe...but he has a variant so no one

really knew what to expect. He continued to play basketball and

ride his bike and scooter and played outdoors and swam and joined a

bowling team....all of the normal kids stuff until around 12 when he

really started to fatigue too quickly. Then after a big and busy

physical day he would be sick for the next day or so (sometimes

longer).

He couldn't eat, couldn't sleep and couldn't stop the muscle cramping. When he

started middle school at a very large campus the doctor agreed that in order to

maximize his strength he should use a wheel chair to get from class to class -

so that's what he does. The addition of the power assist chair has really

helped tremendously.

Over the weekend we balance his physical activity so he doesn't over extend

himself. We have found what works for us. It's important to mention that in

the past 2 years he has grown almost 12 iches...which has also taken a huge toll

on his stamina.

I understand your concerns in having children. My children are both

adopted. To the best of our knowledge CMT did not run in my sons

family history...so there is no way to know what God has planned for

us.

Wishing you peace and more good days than bad!