Re: SMA family on the news - lori

[Guest guest]

Hi Lori

 

imp not sure what Ur getting at by saying 'we' are not normal who is this we?

 

Yes I do have SMA but yet I have still to find any one on this who I can fully

relate to

after reading over ur long list of the 'un-normal' things 'we' again need done

personally I tick about two of them and I don’t need them done I need

assistance to carry such tasks as to move around my bed or chair and assistance

to clear my lungs if I have a cheats infection

 

and to imply that people cannot accept that they are not 'normal' whatever u

have defined normal as is a total insult and misunderstanding of me personally

possibly others in here

 

Yes I can’t walk I do the toilet though a tube I use a c-pap to breath at

night and I need assistance with all personal care

 

but I also go to university go out every weekend to night clubs with my friends

and do everything else a 18 year old within my society dose so if u fell the

need to have a definition of normal witch by the way dose not exist and put ur

self in a box PLEASE do not put me in it just because I have sma does not make

me un normal or anything near it I fully accept my condition and who I am but I

don’t accept some one putting me in a box

 

 

lauramechelle

 

[Guest guest]

mechelle,

I am afraid you missed the entire point of my post but I completely respect your

difference of opinion. As I said in my post, to propose that SMA is normal or

common is to minimize the multiple challenges we face every day and especially

as we age with Type I and II. 

As I said to this morning, I think that we all try to normalize of lives

and do the best we can in everything we do.

Thank you for sharing your thoughts on this matter.

Lori

________________________________

From: as if <xx_laura_s_xx@...>

Sent: Sunday, November 23, 2008 4:15:46 PM

Subject: Re: SMA family on the news - lori

Hi Lori

 

imp not sure what Ur getting at by saying 'we' are not normal who is this we?

 

Yes I do have SMA but yet I have still to find any one on this who I can fully

relate to

after reading over ur long list of the 'un-normal' things 'we' again need done

personally I tick about two of them and I don¢t need them done I need assistance

to carry such tasks as to move around my bed or chair and assistance to clear my

lungs if I have a cheats infection

 

and to imply that people cannot accept that they are not 'normal' whatever u

have defined normal as is a total insult and misunderstanding of me personally

possibly others in here

 

Yes I can¢t walk I do the toilet though a tube I use a c-pap to breath at night

and I need assistance with all personal care

 

but I also go to university go out every weekend to night clubs with my friends

and do everything else a 18 year old within my society dose so if u fell the

need to have a definition of normal witch by the way dose not exist and put ur

self in a box PLEASE do not put me in it just because I have sma does not make

me un normal or anything near it I fully accept my condition and who I am but I

don¢t accept some one putting me in a box

 

 

lauramechelle

 

[Guest guest]

And my question would be, why is it so important to be " normal " ?

On Nov 23, 2008, at 6:13 PM, Lori G wrote:

> mechelle,

>

> I am afraid you missed the entire point of my post but I completely

> respect your difference of opinion. As I said in my post, to propose

> that SMA is normal or common is to minimize the multiple challenges

> we face every day and especially as we age with Type I and II.

>

> As I said to this morning, I think that we all try to

> normalize of lives and do the best we can in everything we do.

>

> Thank you for sharing your thoughts on this matter.

>

> Lori

>

>

>

>

>

> ________________________________

> From: as if <xx_laura_s_xx@...>

>

> Sent: Sunday, November 23, 2008 4:15:46 PM

> Subject: Re: SMA family on the news - lori

>

>

> Hi Lori

>

> imp not sure what Ur getting at by saying 'we' are not normal who is

> this we?

>

> Yes I do have SMA but yet I have still to find any one on this who I

> can fully relate to

> after reading over ur long list of the 'un-normal' things 'we' again

> need done personally I tick about two of them and I don¢t need them

> done I need assistance to carry such tasks as to move around my bed

> or chair and assistance to clear my lungs if I have a cheats infection

>

> and to imply that people cannot accept that they are not 'normal'

> whatever u have defined normal as is a total insult and

> misunderstanding of me personally possibly others in here

>

> Yes I can¢t walk I do the toilet though a tube I use a c-pap to

> breath at night and I need assistance with all personal care

>

> but I also go to university go out every weekend to night clubs with

> my friends and do everything else a 18 year old within my society

> dose so if u fell the need to have a definition of normal witch by

> the way dose not exist and put ur self in a box PLEASE do not put me

> in it just because I have sma does not make me un normal or anything

> near it I fully accept my condition and who I am but I don¢t accept

> some one putting me in a box

>

>

> lauramechelle

>

>

>