Re: normal for Ken

[Guest guest]

Well I have a book with the title: " NORMAL " is a Setting on Your Dryer.

It's a really good book and really makes you think about what your

perception of normal is compared to others. If nothing else, the book gives

you a good laugh and lets you know that what is " normal " for you is just

fine. No mater what others think.

Mother to Nichole 9 mos.(CHARGEr) & Carlie 2 yrs

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[Guest guest]

Everything you said is exacltly how I picture sean in

the future. " normal " comes from people at work,

relatives, etc. It's definitely not my word. thanks

for responding because I feel the same way. I can

deal with the theraputic issues. It was the heart

issue that almost 'broke my heart'.

--- Michele Westmaas wrote:

> Ken-

> Boy, what you said about wishing that your kid will

> be " normal " at a

> certain age sure hit home. I felt exactly the same

> way when Aubrie was

> an infant. We imagined that by kindergarten she'd

> be a regular kid who

> just had some trouble walking and stuff. Well,

> she's almost 3 and she's

> sort of " normal " in many ways, but very " different "

> in other ways. She

> seems totally normal to me -- which means I've

> adjusted my concept of

> normal and our family has become accustomed to

> living with CHARGE. We

> still have more doctor visits than a typical kid,

> still have possible

> surgeries for ear tubes and eye muscle realignments

> (but nothing major

> anymore). Aubrie doesn't talk like a typical kid --

> she uses a combo of

> sign and speech. But she communicates her messages

> very well. She has

> above age-level receptive language skills so she

> understands everything

> we say. She's silly and can express her sense of

> humor. She can walk

> but still falls more than usual, needs help on curbs

> and unsteady

> surfaces, can't quite run... etc. She gets where

> she needs to go and

> keeps up with the others, it's just different. It's

> so hard to

> explain. Everything she does is " different " but

> it's not really

> " abnormal " . She's just her. And she's so

> absolutely cute that everyone

> who meets her thinks she's a living doll. Our life

> is not " normal " in

> the sense that I had hoped it would be (meaning as

> it was before CHARGE)

> but it is " normal " in the sense that we still do the

> same things we did

> before, we still interact the way we did before,

> we're used to the new

> considerations we have (like her being afraid of the

> air show, etc) and

> life is fine. It's not perfect and there are times

> when I'm exhausted

> and frustrated by this CHARGE thing, but for the

> most part it's ok and

> we're content. So--- will probably not be

> " normal " in your old

> sense of the word because CHARGE will not go away.

> But -- he may do

> very well and your lives may become " normal " .

>

> I don't know if that made any sense, but I hope it

> helps you deal with

> those worries for the future. I wish you could meet

> Aubrie. She's so

> sweet and so competent in many ways. I think she'd

> be a comfort to you.

>

> Michele

> mom to Aubrie (almost 3) CHaRgE and (9-- just

> elected class

> president!), wife to DJ

> west@...

>

>

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