Re:How can I prepare/not knowing

[Guest guest]

Hello :

I was in my early thirties when I first started really experiencing

the symptons of CMT. I was pretty scared. I had two children ages

six and eight and they were just starting to be active outside the

home. At first, I continued to make myself do what I thought a " normal " good

mother did. I would walk through malls for those

special tennis shoes, stand on concrete floors to sell cokes at

their sporting events, and so on.

And I paid the consequences - sore feet, aching back, tiredness... you know the

results. Then one day, my oldest son told me that even tho he liked all that I

did for him, he didn't like to see me hurting and it made him feel bad that he

was the cause. I cried for hours.

I never meant to put a guilt trip on him and I was so worried that he was

worrying about his mom instead of just having fun like any 8 year old should.

That is when I started thinking of other ways to give them what they needed and

still preserve a part of myself. I asked our athletic club if there was some

other way that I could contribute rather than standing in the concession stand.

They worked with me and I was able to help in other ways such as sitting at the

door to collect the admission fee.

I also would help our team with carpooling, keeping score, etc. Everyone who

was on our team understood my situation and didn't mind a bit that I was helping

in a different way. Oh I'm sure to parents who didn't know my situation they

probably thought I was a slacker - there will always be people in the world who

are judgemental. That is their disability.

As for shopping, I learned to find stores in strip centers where we could park

in front, go directly into the store and make our purchase and get out.

Actually, this saved money by by-passing stores that might cause spur of the

moment spending and everyone was less tired. Being boys, they didn't really

care so much about the mall. And if they just really wanted to go there, either

their dad, their aunt or

another parent took them.

What I'm telling you here is that part of CMT is " Can Manage This " , by being a

little creative my boys had a good, normal childhood and they have never

complained about the things we couldn't do together. They are both in their

twenties now, are pretty self-sufficient and just regular guys. I think if I

asked them today if they felt deprived as kids they would say, " Mom, get over

yourself! You did just fine " . Trust yourself , you'll make good

decisions for all of you. Hang in there.