Kimi

[Guest guest]

Kimi,

You know- I have had friends tell me it is a shame that I am wasting my

potential working at home. Meaning my college degree is useless and I could make

so much more if I used it and went to work somewhere- which is true. What they

fail to see is that I have chosen to stay with BCBS and work at home so I can

take care of Brett. I feel very lucky and blessed to be able to stay at home

with Brett and don't consider it a waste of potential. I am only at my best

potential when I am with Brett!

Now- don't get me wrong- When I was in college before I had Brett- I obviously

wanted to get a high paying job- but when you die- nobody is going to talk about

how much money you made in life- your legacy is what people will talk about-

whether you were nice and what you did for other people. I am kinda rambling now

but my point was that I agree with you that life isn't about making money it is

about what you make out of it.

Kristal

Mom to Brett- SMA II- 6 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Re: Airplane Scenario/Kimi *R-Rated Post*

Meg,

Thanks! Yes, my mom too calls me a burden to my face and my extended family

has discussions behind my back about how I am a burden to her. I just try

to ignore the whole thing now, instead of fighting them. My only mission in

life is to love others as much as I can and to inspire others. But to my mom

that's not making money.

Kimi

In a message dated 1/12/2006 1:42:58 P.M. Eastern Standard Time,

pink-tulip@... writes:

Kimi,

People say many things they don't mean when they are frustrated. I don't

think your mom would leave you if this scenario actually were to happen, God

forbid. The woman, that just died, my friend's mom, she was sort of like

you describe your mom. I found this out yesterday, but she was constantly

say to her daughter, who is less afflicted that you and I, that she is a

burden. She told strangers, friends, family members, about what a burden my

friend was to her. She would even do it right in front of her, and my

friend only put her head down in shame. She also always told her that no

man will ever want a girl as crippled and lazy as she is.

So, now I think I understand why my friend isn't grieving for her mom as

much as one would expect. Maybe if her mom had lived, she would have pushed

her over the edge and my friend might have ended up taking her life, as she

often thought of.

Please don't misunderstand me. I don't think the woman deserved to die so

young, leaving two daughters behind. I think my friend will eventually

grieve deeply for her mom, when the reality of the whole thing hits her.

And I don't wish death or anything like that on your mom. No way! But I

agree with the karma thing. If you do evil to others, sooner or later, it

will come back and bite you in the ass.

Each life is precious. Yours is too. And who gives a flying fuck how much

you contribute to society?! You touch many lives, just through emails

alone. I can only imagine how many lives you've touched in person. That is

true human value. Society can go to hell! *LOL*

Luv Ya Dearly!

Eternal Blessings,

Meg.

[Guest guest]

Kimi,

I do understand what you are saying but I bet if you surveyed people- The same

people who feel disabled adults don't deserve paid aides are the same people who

will think that the schools should not provide aides. ly, I feel like that

is BS- I am obviously not one of those. I am not sheltering and being

overprotective of Brett and YES I do think it is the schools' obligation to

provide an aide for every child that needs one. The responsibility should not be

mandated on other students- yes it is nice if they want to assist- but maybe

kids are different these days- I do see lots of kids that love to help Brett but

when it becomes an obligation is when there becomes an issue. Brett should not

feel the brunt of another child when the responsibility is not theirs. I don't

feel this makes Brett dependent or expecting that things be done for him. He

only asks for assistance when necessary, which unfortunately is often in school.

Kristal

Mom to Brett- SMA II- 6-1/2 years old

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm

Learn more about SMA:

www.fsma.org

www.smasupport.com

Re: Good point e re: SMA students w/assistants/

parent pe...

If they are comparable then why does one seem more important when deciding

where the state funding goes. Yes, you are an adult not a child, but if you

need one on one care as a child in school then you'll need one on one care as

an adult in whatever setting you chose. If someone needed suctioning during

those breaks (which for some could be hours) and could not afford to pay out

of pocket, what would he/she do? When I went to college, I knew no one and

my parents have full time jobs. At first I paid out of pocket but once my

needs increased, thank God I had private insurance and great friends by then.

If not, I wouldn't have finished college. Yes we are not guaranteed a college

education, but why does the importance of basic needs being met change? If

more DA adults were entitled to the type of services they provide for

children in public schools, many would most likely be employed and

contributing to

the taxes that pay for the services.

Smiles,

Kimi

In a message dated 9/9/2006 11:09:43 P.M. Eastern Daylight Time,

abrcrombsweetie@... writes:

In

college I had to go thru a different system for

attendent care and it sucks! They only pay for time

spent in class... so if I have a 20 min break between

classes, my aid does not get paid! If it wasnt my best

friend or my mom I could have very well been deserted

during that time!

I agree with the comparison of it to adult attendent

care that the state pays for.