RE: A thought/question regarding religion & SMA

[Guest guest]

I have SMA I/II and see my disability as a gift from God, not a curse. Having

never been able to walk, sit without support, dress or toilet myself, turn in

the bed, drive a car, etc., has made me aware of many, many things that

others take for granted. I doubt that without my disability that I would have

completed graduate school and go on to form a nonprofit organization that

assists

over 200 disabled and elderly people keep and care for their cherished

companion animals. No one else in my family has achieved as much.

God made me disabled, I believe, so that I can help and be an inspiration to

others simply by living a " normal " life. Nothing in Nature is coincidence, I

believe. God has a hand in everything. Therefore, I've never been depressed or

felt that my life was useless. I love me. SMA is a part of who I am.....just

like my blue eyes. And, I'm proud that God has blessed me with this gift of

touching the lives of others.

By the way, I am Christian who doesn't attend church.

Vicki

[Guest guest]

I do believe that my having SMA is part of God's plan for me, but I don't

look at it as having a target on my head. It relates back to the purpose of

life, the reason we're all here. I believe that we all existed as spirit

children of our Heavenly Father before we came to earth. For millions of years,

we

learned and we grew and we became more like our Heavenly Father. In order to

live where he is and receive all the blessings he has for us, we have to become

like him. Some of those lessons we need to grow from involve coming here to

earth. As premortal spirits, we all had strengths and weaknesses. When we

came to earth, we were given the circumstances that we needed to allow us the

opportunity to overcome our weaknesses, and utilize our strengths for the

benefit of those around us. If I didn't have my disability, I don't think I'd

even be the same person that I am today. It's helped me to learn things and grow

in the ways that I need to. And I think it's given me opportunities to help

other people in unique ways. Everybody in the world has trials, and I don't

think mine are better or worse than anybody else's; I think that they're

tailored to fit me, and I consider that a blessing. Of course SMA has caused me

a

lot of pain (not just physical) throughout my life, and like Meg said, I

think God cries with us and shares our pain when he sees us suffering. He hates

seeing his children suffer. But he also can see the bigger picture, and he

knows the pain is just a short moment, and he sees the amazing people we're

becoming, and he knows what sort of blessings beyond our own imaginations are

waiting for us. Taking away our trials would be taking away our chance to grow,

and he wouldn't do that. He loves us too much. Dr. Arthur Wentworth Hewitt

said, " He loves *us* so much more than he loves our happiness. " That's where I

get my strength.

-e

In a message dated 1/3/2006 12:09:59 P.M. Pacific Standard Time,

mongomustgolf@... writes:

Hey all: Over the holidays, in a pretty casual

conversation with a relative (who is quite religious),

the topic of a conversation shifted to that of

" disease all rooting back to man's fall from grace "

and a subtle suggestion that someone living with a

disease is actually just part of God's plan. Does

anyone else take offense to this suggestion? To me,

it more or less said that my innocent son was born

with some sort of a target on his head. I don't agree

at all with this interpretation and I am now

re-examining some of my beliefs (or at least what I

thought I believed). I'm not meaning to start a

religion vs. no religion arguement here - I'm mostly

interested in hearing viewpoints of those religious

folk out there who have SMA or have a child or sibling

or friend with SMA. I'm trying to research this

question other ways but know there are several in this

group who hold deep religious convictions. Thanks.

Mitch

[Guest guest]

Hey all: Over the holidays, in a pretty casual

conversation with a relative (who is quite religious),

the topic of a conversation shifted to that of

" disease all rooting back to man's fall from grace "

and a subtle suggestion that someone living with a

disease is actually just part of God's plan. Does

anyone else take offense to this suggestion? To me,

it more or less said that my innocent son was born

with some sort of a target on his head. I don't agree

at all with this interpretation and I am now

re-examining some of my beliefs (or at least what I

thought I believed). I'm not meaning to start a

religion vs. no religion arguement here - I'm mostly

interested in hearing viewpoints of those religious

folk out there who have SMA or have a child or sibling

or friend with SMA. I'm trying to research this

question other ways but know there are several in this

group who hold deep religious convictions. Thanks.

Mitch

--- <mongomustgolf@...> wrote:

> Ditto.

>

> --- jondus@... wrote:

>

> > Sorry, but I disagree. I definitely care about

> > animals. However,

> > people are definitely more important than animals.

>

> > We obviously are not

> > the same, and were not created for the same

> > purposes. That doesn't mean

> > I support being cruel to animals, but I certainly

> > don't see how they

> > could be placed them on the same platform as

> people.

> >

> > Re: Animal rights verses

> Human

> > rights

> >

> >

> > Good points, but i beiliev wholeheartedly that

> > animals are just as

> > important as people in this world. I mean you

> never

> > ask a heart surgeon

> > why he's not a brain surgeon. If these people

> chose

> > to help animals, all

> > the power to them, money goes to waste so much, at

> > least that money was

> > put toward good.

> >

> >

> > Love, Peace and Green Day,

> > Ali +

> >

> >

>

>

>

>

>

> __________________________________

> for Good - Make a difference this year.

> http://brand./cybergivingweek2005/

>

__________________________________

for Good - Make a difference this year.

http://brand./cybergivingweek2005/

[Guest guest]

Only because you asked... :-)

I also personally believe that disease is a result of humankind's fall from

grace. HOWEVER, I do not believe that it is God who inflicts disease, injury,

misfortune, etc. on anyone. The God I love is compassionate, and according to

the Bible, in 18:14, " Even so it is not the will of your Father which is

in heaven, that one of these little ones should perish. " (No, Mitch...see? God

does NOT will for your little man to be sick.) I believe that disease, pain,

etc., comes from Satan.

I do not and never will believe that God got the idea one day to shoot SMA at

someone in the early part of 1977, and said, " Yep, she looks like a good one to

knock down. " Nor do I believe that anyone on this list or anyone with any

disease/disorder are the brunt of some sick cosmic joke. I know that He has

always had a plan for my life ( 29:11 - my personal favorite of all the

Bible's awesome promises) and despite the fact that I have a problem physically,

He still has a plan for me. I will live until I accomplish His purpose for me,

SMA or not, and when I have finished whatever it is, I will check out of these

digs and check into my new ones.

Illness or pain was never His plan for any of His kids. As Stormie O'Martian

explained it, it was " plan B. " The one that happened when His plan was

thwarted.

He chooses to allow it for whatever reason, which obviously is beyond my

understanding. But I fully believe that someday, I'll see His reasoning. Do I

always like being a wheelie? Of course not! Sometimes in my moments of sadness

or grief over loss of strength or function, I loathe it. But I have made a

conscious choice to live for Christ. I'd like to think I'd be the same person

on the inside whether my outside is " normal " or " not normal. " (Note the

quotes...) My choice to believe in a compassionate God and loving Savior is not

because I needed a crutch. Shoot...why would I need one? I already use a

wheelchair. ;-) I chose and choose to believe because I cherish the idea that

I am loved beyond all my imagination.

I really look up to Joni Eareckson Tada. She's done a lot for the disability

community worldwide. And as she once said, " I would rather be in this chair

knowing Him than on my feet without Him... "

Ditto. I so agree.

Blessings,

Holly

>

> From: <mongomustgolf@...>

> Date: 2006/01/03 Tue PM 06:09:19 GST

>

> Subject: RE: A thought/question regarding religion & SMA

>

>

[Guest guest]

Mitch,

Bryce didn't do anything...neither did my son Jordan. We need to make

sure we remember that! God didn't plan for Bryce, Jordan, or anyone

else to have SMA, so I'm not sure where your relative got that idea.

However, death and sickness are the result of sin. There was no death

or sickness as part of God's original creation plan, but the original

fall of man brought it on. So, indirectly, SMA is a result of that

sin...as is any other disease or ailment (such as my backache and cold

I'm dealing with at the moment). It's just not anything Bryce or Jordan

did to cause it, nor were they a target.

Genesis 2:17 - But of the tree of the knowledge of good and evil, thou

shalt not eat of it: for in the day that thou eatest thereof thou shalt

surely die. (Notice here it wasn't that way to start with.)

Roman 6:23 - For the wages of sin is death; but the gift of God is

eternal life through Jesus Christ our Lord.

If you think about it, it makes sense. Something caused the original

genetic mutation to occur. We may not like that idea, but God's Word

tells us that's the way it happened...so don't shoot the messenger. In

fact God is not the one to shoot either. The one to shoot is the guy

that actually caused Adam and Eve to fall into sin.

My 2 cents...

Jay

Re: Animal rights verses

> Human

> > rights

> >

> >

> > Good points, but i beiliev wholeheartedly that

> > animals are just as

> > important as people in this world. I mean you

> never

> > ask a heart surgeon

> > why he's not a brain surgeon. If these people

> chose

> > to help animals, all

> > the power to them, money goes to waste so much, at

> > least that money was

> > put toward good.

> >

> >

> > Love, Peace and Green Day,

> > Ali +

> >

> >

>

>

>

>

>

> __________________________________

> for Good - Make a difference this year.

> http://brand./cybergivingweek2005/

<http://brand./cybergivingweek2005/>

>

__________________________________

for Good - Make a difference this year.

http://brand./cybergivingweek2005/

<http://brand./cybergivingweek2005/>

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[Guest guest]

Excellently written Holly! I agree! By the way, the other important

thing to remember is that this life on earth is but a blip...a mere 70

years if God is willing...though any of us could leave this earth at any

time. I plan on spending eternity with Jordan in Heaven someday,

watching him run the 100 yard dash in 8 seconds, slam-dunk a basketball,

and power lift 500 lbs! Eternity is much longer than this temporal

life, so I'll spend my time here first focusing on making sure my family

understands God's plan of salvation. The way I see it, if any member of

my family doesn't get to Heaven I've failed as a parent since instilling

that understanding is my number one job.

Also, in the meantime while I'm here, I'll focus on finding Jordan the

best care I can to keep him as healthy and functional as possible...and

continue to pray for a cure.

Jay

RE: A thought/question regarding religion & SMA

>

>

[Guest guest]

Holly: Great stuff and very well written. I'm 58 have battled sma all my life

along with three other brothers. I've married 33 yrs ago fathered three abled

bodied children all grown now. Worked for 25 yrs, own my own home and have

enjoyed a lot of blessings in this life. I thank God everyday for my

accomplishments. My firm belief is that my life was written before I arrived

here to experience something living this way to advance my spiritual journey. I

totally admire those persons that young or old who can actually experience such

a life without blame attached for such an existance in this life. I commend and

love those associated with the care giving aspect of these special souls aiding

them on this journey. My feeling is that they are Angels of God sent to help

achieve their destiny.

I am a reglious person with a profound love of God and the opportunities that He

makes available for us to continue to learn to love and rspect all life on a

soul journey towards perfection via just such experiences.

God bless, keep smiling and good health.

Bernie

hollyrp@... wrote:

Only because you asked... :-)

I also personally believe that disease is a result of humankind's fall from

grace. HOWEVER, I do not believe that it is God who inflicts disease, injury,

misfortune, etc. on anyone. The God I love is compassionate, and according to

the Bible, in 18:14, " Even so it is not the will of your Father which is

in heaven, that one of these little ones should perish. " (No, Mitch...see? God

does NOT will for your little man to be sick.) I believe that disease, pain,

etc., comes from Satan.

I do not and never will believe that God got the idea one day to shoot SMA at

someone in the early part of 1977, and said, " Yep, she looks like a good one to

knock down. " Nor do I believe that anyone on this list or anyone with any

disease/disorder are the brunt of some sick cosmic joke. I know that He has

always had a plan for my life ( 29:11 - my personal favorite of all the

Bible's awesome promises) and despite the fact that I have a problem physically,

He still has a plan for me. I will live until I accomplish His purpose for me,

SMA or not, and when I have finished whatever it is, I will check out of these

digs and check into my new ones.

Illness or pain was never His plan for any of His kids. As Stormie O'Martian

explained it, it was " plan B. " The one that happened when His plan was

thwarted.

He chooses to allow it for whatever reason, which obviously is beyond my

understanding. But I fully believe that someday, I'll see His reasoning. Do I

always like being a wheelie? Of course not! Sometimes in my moments of sadness

or grief over loss of strength or function, I loathe it. But I have made a

conscious choice to live for Christ. I'd like to think I'd be the same person

on the inside whether my outside is " normal " or " not normal. " (Note the

quotes...) My choice to believe in a compassionate God and loving Savior is not

because I needed a crutch. Shoot...why would I need one? I already use a

wheelchair. ;-) I chose and choose to believe because I cherish the idea that

I am loved beyond all my imagination.

I really look up to Joni Eareckson Tada. She's done a lot for the disability

community worldwide. And as she once said, " I would rather be in this chair

knowing Him than on my feet without Him... "

Ditto. I so agree.

Blessings,

Holly

>

> From: <mongomustgolf@...>

> Date: 2006/01/03 Tue PM 06:09:19 GST

>

> Subject: RE: A thought/question regarding religion & SMA

>

>

[Guest guest]

Meg, Vicki, Jay, Holly, e, Bernie:

Thanks so much for your thoughts and words regarding

your beliefs on this topic. I'm not sure where my

beliefs fall on this issue - but I'll certainly read

up and hopefully find some reconcilable answers.

Loosely, my first reaction (which I did not display to

the relative at the time of our conversation or in my

message to this group) - was one of complete anger and

a mode of complete protection of my child - thoughts

of " How dare you make that implication about my son "

were just the beginning. Truth be told, I've said

this before - and I'll continue saying it - we are all

disabled in some regard - ALL of US.

My Dad was a large, very strong & powerful man - a

football star when he was younger - his hands & arms

were immensely powerful - even up until his death he

could pretty much take on anyone I can imagine. I'm

not small by any means, and my Dad even after 5

bypasses, congestive heart failure, several heart

attacks, etc. - the day he died, he could've whooped

me good & hard & not (though in life, my Dad was a

very intellifent & non-violent man) - but he died at

age 51 - heart disease - and he died very quietly and

in complete weakness (in complete contrast to his

life). His Dad died at 36 of similar ailment and way.

The POINT (I think I'm trying to make) - all people

have something wrong with them to one degree or

another - just that some, either aren't as obviously

evident (or evident early), or are health issues that

have been cured or treated, or are health issues that

just not might not live long enough to see.

If we are to say that all disease/human

suffering/death resulted from man's fall from grace

(original sin) - people need look no further than the

end of their own nose if they want to point somewhere.

Folks that point to little children (or adults) with

an obvious physical disability are not only vein about

their own physical prowess but also are not

recognizing their own limitations and apparently

unrepentant of their own 'sin.' (I really don't like

using the word sin, though, here it seems

appropriate). For my feeble cognitive abilities, I

like to bring it back to WWJD question - certainly not

suggest that a small innocent child's physical

disability is incumbant in that God wanted to 'punish'

that child and why.

As an aside, I actually think Jesus would agree more

with so-called ideological beliefs of the USA's

Democractic Party versus Repubilican Party - but

that's another chat for another day in another year.

One disease that I can think of that afflicts a

majority of people on this planet and certainly the

USA is CMA (Cereberal Mind Atrophy - also known to the

layperson as DPD or Dumb People Disorder). Thankfully

folks with SMA have complete natural immunity to

CMA/DPD - thus the ability to recognize and assist

those with CMA/DPD (and we needs us lots of

assistance, believe me). Sorry for this little

comedic interlude, but, alas, that is how I best

communicate when discussing complicated ideas,

feelings, beliefs, etc. - or at least it is something

I have to inject so as not to be perceived as being

too much into my own self (which I'm not) and my own

thoughts and ideas (that truthfully aren't

necessarilly that insightful or even amusing - but

what the heck, I try). And, for the record, most

people, aren't the sharpest tool in the shed (me as a

prime example).

Seriously though, thank you again for your thoughts

and words. I take them all to heart and recognize and

appreciate their full sincerity. Mitch

--- hollyrp@... wrote:

> Only because you asked... :-)

>

> I also personally believe that disease is a result

> of humankind's fall from grace. HOWEVER, I do not

> believe that it is God who inflicts disease, injury,

> misfortune, etc. on anyone. The God I love is

> compassionate, and according to the Bible, in

> 18:14, " Even so it is not the will of your

> Father which is in heaven, that one of these little

> ones should perish. " (No, Mitch...see? God does

> NOT will for your little man to be sick.) I believe

> that disease, pain, etc., comes from Satan.

>

> I do not and never will believe that God got the

> idea one day to shoot SMA at someone in the early

> part of 1977, and said, " Yep, she looks like a good

> one to knock down. " Nor do I believe that anyone on

> this list or anyone with any disease/disorder are

> the brunt of some sick cosmic joke. I know that He

> has always had a plan for my life ( 29:11 -

> my personal favorite of all the Bible's awesome

> promises) and despite the fact that I have a problem

> physically, He still has a plan for me. I will live

> until I accomplish His purpose for me, SMA or not,

> and when I have finished whatever it is, I will

> check out of these digs and check into my new ones.

>

>

> Illness or pain was never His plan for any of His

> kids. As Stormie O'Martian explained it, it was

> " plan B. " The one that happened when His plan was

> thwarted.

>

> He chooses to allow it for whatever reason, which

> obviously is beyond my understanding. But I fully

> believe that someday, I'll see His reasoning. Do I

> always like being a wheelie? Of course not!

> Sometimes in my moments of sadness or grief over

> loss of strength or function, I loathe it. But I

> have made a conscious choice to live for Christ.

> I'd like to think I'd be the same person on the

> inside whether my outside is " normal " or " not

> normal. " (Note the quotes...) My choice to believe

> in a compassionate God and loving Savior is not

> because I needed a crutch. Shoot...why would I need

> one? I already use a wheelchair. ;-) I chose and

> choose to believe because I cherish the idea that I

> am loved beyond all my imagination.

>

> I really look up to Joni Eareckson Tada. She's done

> a lot for the disability community worldwide. And

> as she once said, " I would rather be in this chair

> knowing Him than on my feet without Him... "

>

> Ditto. I so agree.

>

> Blessings,

> Holly

>

>

> >

> > From: <mongomustgolf@...>

> > Date: 2006/01/03 Tue PM 06:09:19 GST

> >

> > Subject: RE: A thought/question

> regarding religion & SMA

> >

> >

>

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________

DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.

[Guest guest]

Mitch, it wasn't hard to guess your reaction to that relative. : )

I've been trying to find words appropriately Religious to address the

" why " question. But, although people perceive me as religious, it's

not about a religion or a creed with me. In fact, I kind of rebel at

being an inspiration or a test for someone else . . . What's

important to me is a relationship with Jesus Christ.

Back to " why? " -It is simply easier to accept something difficult if

you can blame it on something or someone, or you have a reason to

justify it. " This happened because. . . " I like the explanation that

in the beginning God set the physical laws of nature in place and can

intervene in the process, but often chooses not to. Somewhere, many

generations back, a gene got warped and the results landed on me. For

my cousin, some cells went nuts and she got cancer. I'd rather not

believe either was the direct result of human action. Why does God

allow it? I don't know.

But I will love Him, trust Him, and follow Him. Years ago I heard

someone say this : I'd rather live a life of believing than not.

Then, when I reach eternity, if God isn't there, I'll look around and

tell the universe I expected more. But I will have lived a life of

faith. Much better than the alternative.

Will find out why someday. " Until then, my heart will go on singing. "

(that's from an old song)

[Guest guest]

I hate when people say things like its part of God's plan. Or " It was

meant to be. " I thiink that would offend me. I also don't like when

people say " he's there to help teach me. " I feel that is a little

selfish. I don't believe everything is planned. IMO that is sad. The

future is not written in stone. A small choice can drastically change

things. Maybe it's too cliche, but your life is what you make it. I

think SMA and DMD and all disease just happened. God didn't cause it.

neither did Satan. Neither did people. I think it's too easy to blame it

on adam and eve.

I like your political message you threw in there but I don't wanna start

anything

wrote:

>Meg, Vicki, Jay, Holly, e, Bernie:

>

>Thanks so much for your thoughts and words regarding

>your beliefs on this topic. I'm not sure where my

>beliefs fall on this issue - but I'll certainly read

>up and hopefully find some reconcilable answers.

>

>Loosely, my first reaction (which I did not display to

>the relative at the time of our conversation or in my

>message to this group) - was one of complete anger and

>a mode of complete protection of my child - thoughts

>of " How dare you make that implication about my son "

>were just the beginning. Truth be told, I've said

>this before - and I'll continue saying it - we are all

>disabled in some regard - ALL of US.

>

>My Dad was a large, very strong & powerful man - a

>football star when he was younger - his hands & arms

>were immensely powerful - even up until his death he

>could pretty much take on anyone I can imagine. I'm

>not small by any means, and my Dad even after 5

>bypasses, congestive heart failure, several heart

>attacks, etc. - the day he died, he could've whooped

>me good & hard & not (though in life, my Dad was a

>very intellifent & non-violent man) - but he died at

>age 51 - heart disease - and he died very quietly and

>in complete weakness (in complete contrast to his

>life). His Dad died at 36 of similar ailment and way.

> The POINT (I think I'm trying to make) - all people

>have something wrong with them to one degree or

>another - just that some, either aren't as obviously

>evident (or evident early), or are health issues that

>have been cured or treated, or are health issues that

>just not might not live long enough to see.

>

>If we are to say that all disease/human

>suffering/death resulted from man's fall from grace

>(original sin) - people need look no further than the

>end of their own nose if they want to point somewhere.

> Folks that point to little children (or adults) with

>an obvious physical disability are not only vein about

>their own physical prowess but also are not

>recognizing their own limitations and apparently

>unrepentant of their own 'sin.' (I really don't like

>using the word sin, though, here it seems

>appropriate). For my feeble cognitive abilities, I

>like to bring it back to WWJD question - certainly not

>suggest that a small innocent child's physical

>disability is incumbant in that God wanted to 'punish'

>that child and why.

>

>As an aside, I actually think Jesus would agree more

>with so-called ideological beliefs of the USA's

>Democractic Party versus Repubilican Party - but

>that's another chat for another day in another year.

>

>One disease that I can think of that afflicts a

>majority of people on this planet and certainly the

>USA is CMA (Cereberal Mind Atrophy - also known to the

>layperson as DPD or Dumb People Disorder). Thankfully

>folks with SMA have complete natural immunity to

>CMA/DPD - thus the ability to recognize and assist

>those with CMA/DPD (and we needs us lots of

>assistance, believe me). Sorry for this little

>comedic interlude, but, alas, that is how I best

>communicate when discussing complicated ideas,

>feelings, beliefs, etc. - or at least it is something

>I have to inject so as not to be perceived as being

>too much into my own self (which I'm not) and my own

>thoughts and ideas (that truthfully aren't

>necessarilly that insightful or even amusing - but

>what the heck, I try). And, for the record, most

>people, aren't the sharpest tool in the shed (me as a

>prime example).

>

>Seriously though, thank you again for your thoughts

>and words. I take them all to heart and recognize and

>appreciate their full sincerity. Mitch

>

[Guest guest]

Nick's two cents: I cannot believe in a God that would hurt me or kill

people. I think that saying that God wants us to suffer or deliberately

doesn't stop our pain in order to teach us a lesson is just sick.

" In some religions the purpose of life is to perfect oneself. For

Judaism the purpose of life is the healing of the world. " -- rabbi

Shmuley Boteach

" Rabbis and priests should be harbingers of redemption rather than

prophets of doom. As long as we can explain how people can be gassed, or

people die of incurable illness, the pain associated with these losses

will be mitigated. And that is not meant to happen. OUR RESPONSIBILITY

IS TO DEMAND THAT THEY CEASE. "

-- rabbi Shmuley Boteach

This is why I hate the ubiquitous " everything happens for a reason "

meme. Babies don't die of SMA for a reason. Hurricanes don't drown

people in their attics because God wanted it. I don't believe in an

evil, vengeful God. That is an insult. I believe in a loving Creator.

But life isn't perfect; it isn't immune from the abuse of free will or

natural disasters. Where the world is broken it is our duty to heal it,

known in Judaism as Tikkun Olam, known to Catholics as creating God's

Kingdom on Earth.)

/ " /He has shown you, O man, what is good.

What does Adonai require of you, but to act justly,

To love mercy, and to walk humbly with your God? "

Mikhah 6:8

PurplGurl3@... wrote:

>Dr. Arthur Wentworth Hewitt

>said, " He loves *us* so much more than he loves our happiness. " That's where I

>get my strength.

>

>-e

>

>

[Guest guest]

In a message dated 1/3/2006 4:32:37 PM Eastern Standard Time,

hollyrp@... writes:

I believe that disease, pain, etc., comes from Satan.

Holly- I'd like to talk with you more about this.

Perhaps " off " list..........

~

[Guest guest]

In a message dated 1/3/2006 4:32:37 PM Eastern Standard Time,

hollyrp@... writes:

He chooses to allow it for whatever reason, which obviously is beyond my

understanding. But I fully believe that someday, I'll see His reasoning.

Holly- I was waiting for you to chime in on this topic, and I just knew that

you'd have some words of wisdom. As you know, 2 of my kids have

significant disabilities. My 15 y.o. daughter has Syndrome, and my 12

y.o.

son functions on the LOW end of the Autism Spectrum (non-verbal, goes to

residential school), and, my son-in-law with SMA-2.

Anyway, I can't tell you how much your statement above HELPS

me...............

There have been times that I've felt " picked on " . " ENOUGH IS ENOUGH

ALREADY "

Especially, with my son-his disability is the HARDEST to try to

understand!!!!! Anyway, I find your faith to be extremely powerful and that

just gives

me SO much HOPE!

Thanks for being so open and honest.

~

[Guest guest]

In a message dated 1/3/2006 4:32:37 PM Eastern Standard Time,

hollyrp@... writes:

My choice to believe in a compassionate God and loving Savior is not because

I needed a crutch. Shoot...why would I need one? I already use a

wheelchair. ;-)

LOL GOOD point!

~

[Guest guest]

In a message dated 1/3/2006 5:23:27 PM Eastern Standard Time,

mcko_2@... writes:

I am a reglious person with a profound love of God and the opportunities

that He makes available for us to continue to learn to love and rspect all life

on a soul journey towards perfection via just such experiences.

See what I mean? There is SO much " hope " on this list! Thanks, Bernie!

~

[Guest guest]

I normally don't post anything here unless I need something(!), but I

am thrilled this topic has brought so many thoughtful responses and

figured I'd add some perspective as the parent of an angel baby.

A brief history of my family - my husband (Randy) and I had two

wonderful, healthy children when I learned I was pregnant again. It

was a huge YIKES moment! I was 42, no longer had maternity benefits,

and honestly still have NO clue how it happened at that point because

of our chaotic schedules at the time.

was born 2 weeks early (3 days after I turned 43!) and was

beautiful. His Apgar scores were good, and all seemed just fine. His

abdominal breathing bothered only Randy, and since he tends to be a

worrier at times, I didn't dwell on it. I was in a bizarre fog during

most of the pregnancy and the first few weeks after 's birth.

Life was full in many ways at that time, and I decided later that the

'fog' enabled me to tend to other matters of significance.

At 8 weeks, was diagnosed with a severe case of Type 1. In

1997, there was not a glimmer of hope anywhere around, and we were

shipped home to 'wait.' Needless to say, we were reeling from the

shock of the diagnosis (completely foreign) and utterly dismal

prognosis, but we managed to shake ourselves off and act as if we

knew God had allowed this for some good reason. Of course, we had no

idea why because we are mere humans in the grand scheme of life, but

we were able to speculate enough to keep us relatively upright during

our brief journey with this very special little guy.

While there were certainly some 'why me' moments, we chose to focus

on the good things that came from 's short stay with our

family. I was fascinated with some key connections. One example:

Randy lost his job as a football coach near the end of the pregnancy,

even though no one could explain why; I realized later that it

allowed him to be with and spend a LOT of time with our other

two children. Another example: Years ago, I was placed in a teaching

position at a school for orthopedically and multi-handicapped

children, even though that was the area I felt least competent in;

however, I knew almost immediately after the diagnosis that those

years would help in countless ways in caring for and in my

ability to see incredible potential beyond physical limitations. To

say we learned a greater appreciation for simply being here and a

part of God's plan - whatever it may be - sounds like a cliche, but

it's true.

One of the ways I kept sane (sorta!) was to think of our challenge as

a blessing, thanks to the Bible. That was extremely tough in the

beginning, although it gradually became the ONLY way I looked at it.

I refused to be completely consumed by SMA, which I believe, like

others, wasn't caused by God, but rather allowed by God because of

man's doings somewhere along the line. I do not believe SMA was

punishment for my family; I choose to believe - firmly - that we are

all given big challenges throughout life as an opportunity to test

our faith.

I do believe we aren't given more than we can cope with, even though

I wondered a few times with . I cannot imagine getting through

a crisis without a firm belief in the power of God, just as I can't

imagine having a firm belief and NOT being able to get through a

crisis. This doesn't mean it's easy, or that I'd happily volunteer

for a chance to bury another child!!! It does mean (to me, anyway)

that I will be better equipped to handle the challenges/assignments

that come my/our way in the future. And they WILL come!

Although I could go on and on, I will stop now; I fear I'm rambling,

particularly with more than a few interruptions since I started this

last night. It doesn't take much to derail my train of thought!

Thank you all for sharing such honest opinions about this topic. Even

though I am not a regular poster and am no longer dealing with SMA on

an 'active' basis (other than trying like crazy to heighten

awareness!), I do read your posts and have learned so much from those

in this group.

Happy, healthy 2006 to all.

Helen Baldwin

The Journey (http://balderdashe.com)

[Guest guest]

In a message dated 1/4/2006 4:18:14 PM Eastern Standard Time,

LKMartz@... writes:

Please pray that His

divine Will of love will be done in me. My body will return to the

earth of which it was made. My soul is forever!

Jesus, I trust in You...

AMEN!

[Guest guest]

I would like to share my own thoughts about religion and SMA. May the

Lord guide my writing - His mysteries are so very deep, His thoughts are

not our thoughts, nor are His ways our ways...

As others on here described, it was not in God's original plan of

creation to have suffering, disease and death (SMA included). It was a

result of original sin - mans choice to disobey God and eat the

forbidden fruit. When I commit sin and think it's no bid deal, I think

back to how Adam and Eve thought it was no big deal to eat that little

piece of fruit, but their sin brought such pain into the world. I

especially meditate on this when someone dies and the family is grieving

so terribly. Is sin really no bid deal?

God does not " enjoy " suffering - as if He's up in heaven devising ways

to make one suffer. He does though make good come out of all

suffering. How many times in our own lives can we see the good out of

sommething that was horribly painful at the time - such is an example of

how His ways are not our ways. No, we can't always see the good in it,

even when the suffering has passed - thus is a time to exercise faith

and trust in His love and eternal goodness.

I view SMA as a gift rather than a curse. He has allowed me to be on

the Cross with Him. His disciples abandoned Him at the Cross - just

like many of His disciples run in terror and great dislike for suffering

today - we would rather be His disciples when He grants us blessings,

riches, healing, consolation and other wonderful gifts. Do we love the

gifts or the Giver of the gifts? But in His suffering, I am trully close

to Him. As I lose functioning in each of my limbs, it is as if my legs

and arms are each being nailed to the cross. As I gradually lose the

ability to breathe, I am also suffocating with Him. Research the

physical/medical aspects of a crucifixion and this will enlighten you.

I am not going through anything that Jesus has not endured - my

sufferings are miniscule compared to His. He took the bitterness out of

suffering by undergoing it before me - any sweetness that can be found

in suffering He left for us. I would not want to be elsewhere. Is it

easy? NO! Is it fun or a bed of roses? NO! Would I want it any other

way? NO. By the grace of God, I say that.

Sometimes when I go to Church, I have had people say to me " you're gonna

walk soon " or " I am praying that you will be healed " . I greatly need

their prayers. Please don't pray for my healing. Please pray that His

divine Will of love will be done in me. My body will return to the

earth of which it was made. My soul is forever!

Jesus, I trust in You...

[Guest guest]

Hi, My name is Dawn and I have never posted here before, but I read alot of your

posts and I have found them helpful! My son Casey is a weak Type1. I am 32 years

old and I feel that this is the best time in my life! When Casey was diagnosed

it was a verry difficult time as I know you all know. I have always believed in

salvation through Jesus Christ, but I also wanted the young fun party life.

Before Casey, I was selfish, immature and self centered. I have grown so much

since God sent this prescious little gift to me. Whatever the reason for SMA, I

know that my son is a gift from God, SMA and all. I will love him and take care

of him as long as God allows and trust in him for support and strength. I do

think that we all are here to fulfill God's purposes even if we do not believe

it!

I hope you all have a happy healthy 2006, and thank you so much for

letting me be a part of this group, even if I only just read the posts! I will

post more now!

" Lori K. Martz " <LKMartz@...> wrote:

I would like to share my own thoughts about religion and SMA. May the

Lord guide my writing - His mysteries are so very deep, His thoughts are

not our thoughts, nor are His ways our ways...

As others on here described, it was not in God's original plan of

creation to have suffering, disease and death (SMA included). It was a

result of original sin - mans choice to disobey God and eat the

forbidden fruit. When I commit sin and think it's no bid deal, I think

back to how Adam and Eve thought it was no big deal to eat that little

piece of fruit, but their sin brought such pain into the world. I

especially meditate on this when someone dies and the family is grieving

so terribly. Is sin really no bid deal?

God does not " enjoy " suffering - as if He's up in heaven devising ways

to make one suffer. He does though make good come out of all

suffering. How many times in our own lives can we see the good out of

sommething that was horribly painful at the time - such is an example of

how His ways are not our ways. No, we can't always see the good in it,

even when the suffering has passed - thus is a time to exercise faith

and trust in His love and eternal goodness.

I view SMA as a gift rather than a curse. He has allowed me to be on

the Cross with Him. His disciples abandoned Him at the Cross - just

like many of His disciples run in terror and great dislike for suffering

today - we would rather be His disciples when He grants us blessings,

riches, healing, consolation and other wonderful gifts. Do we love the

gifts or the Giver of the gifts? But in His suffering, I am trully close

to Him. As I lose functioning in each of my limbs, it is as if my legs

and arms are each being nailed to the cross. As I gradually lose the

ability to breathe, I am also suffocating with Him. Research the

physical/medical aspects of a crucifixion and this will enlighten you.

I am not going through anything that Jesus has not endured - my

sufferings are miniscule compared to His. He took the bitterness out of

suffering by undergoing it before me - any sweetness that can be found

in suffering He left for us. I would not want to be elsewhere. Is it

easy? NO! Is it fun or a bed of roses? NO! Would I want it any other

way? NO. By the grace of God, I say that.

Sometimes when I go to Church, I have had people say to me " you're gonna

walk soon " or " I am praying that you will be healed " . I greatly need

their prayers. Please don't pray for my healing. Please pray that His

divine Will of love will be done in me. My body will return to the

earth of which it was made. My soul is forever!

Jesus, I trust in You...

[Guest guest]

I find it really interesting how many of the religious people on this list

find the idea offensive that a disability could be part of God's plan. I don't

understand what sort of a plan it would be, if it didn't have adversity?

Personally, I find it much more reassuring and empowering to believe that it all

fit into his plan. If my disability were just randomly thrown at me, I'd

always be asking myself, " Why me? This isn't fair! What if I'm not strong

enough

to handle this? What if I just can't do it? Why doesn't God make it go away? "

My belief system tells me that God already decided this was right for me a

long time ago, and that I agreed to it, and that I was given the preparation I

needed for the challenges I was going to face. It gives me a lot of peace of

mind and confidence that I can deal with whatever life throws at me.

I hope I don't sound like I'm insulting anybody's

beliefs/disbeliefs/whatever, it's definitely not my intention. I just always

find these sorts of

discussions interesting and like to hear different points of view.

-e

[Guest guest]

Whenever I have a question like this I go see what " The Official God

F.A.Q. " has to say on the subject. ( http://www.400monkeys.com/God/ )

L

[Guest guest]

PurplGurl3@... wrote:

>My belief system tells me that God already decided this was right for me a

>long time ago, and that I agreed to it

>

>

God gave you SMA but you got the choice to agree to have SMA? I'm

baffled. I would've definitely checked the " No " box on the divine

application form.

But in all seriousness, I could never believe in an evil God that

decides to give people SMA. If a loving God is above me, he would never

torture people like that.

Nick

[Guest guest]

I was trying to stay out of this one because it is so very sensitive, but here

goes me and my big mouth...

Nick you have a great sense of humor here hehe " divine application " -love it.

But I just wanted to say that G-d sees the whole picture that we don't because

He is who He is, and so at the moment we might think of this disease as torture

(and yeah I agree it is no picnic), but at the same time we can grow and learn

and be a person used for His glory in some way that we might not understand to

begin with. But when all is said and done we will look back and see ohhhhhh that

is why I went through that, so this even greater thing (that we don't know about

yet) could happen!

He is not torturing us, He will get us through all of this if we trust Him to.

oh yeah and just wanted to mention, if we never had anything " bad " happen we

would never know what good is!

Nick Dupree <nickdupree@...> wrote:

PurplGurl3@... wrote:

>My belief system tells me that God already decided this was right for me a

>long time ago, and that I agreed to it

>

>

God gave you SMA but you got the choice to agree to have SMA? I'm

baffled. I would've definitely checked the " No " box on the divine

application form.

But in all seriousness, I could never believe in an evil God that

decides to give people SMA. If a loving God is above me, he would never

torture people like that.

Nick

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[Guest guest]

e,

I wouldn't worry about whether you're insulting or offending anyone's

beliefs. The atheists and agnostics in this group don't seem to be

concerned with insulting the beliefs of the believers in this

discussion, so it doesn't seem as though that matters in this particular

discussion. It's just an open discussion.

Jay

Re: A thought/question regarding religion & SMA

I find it really interesting how many of the religious people on this

list

find the idea offensive that a disability could be part of God's plan. I

don't

understand what sort of a plan it would be, if it didn't have adversity?

Personally, I find it much more reassuring and empowering to believe

that it all

fit into his plan. If my disability were just randomly thrown at me, I'd

always be asking myself, " Why me? This isn't fair! What if I'm not

strong enough

to handle this? What if I just can't do it? Why doesn't God make it go

away? "

My belief system tells me that God already decided this was right for

me a

long time ago, and that I agreed to it, and that I was given the

preparation I

needed for the challenges I was going to face. It gives me a lot of

peace of

mind and confidence that I can deal with whatever life throws at me.

I hope I don't sound like I'm insulting anybody's

beliefs/disbeliefs/whatever, it's definitely not my intention. I just

always find these sorts of

discussions interesting and like to hear different points of view.

-e

[Guest guest]

We seem to have forgotten some of the original replies to this question.

It's becoming obvious that many people (not all) have formed opinions

regarding what the Bible says without actually reading it. God didn't

give you SMA or any other disease, they are consequences to man's choice

from the beginning. (I wouldn't have checked that box for Jordan

either...and wouldn't have even gotten my pencil close to it.) In fact,

the Bible is crystal clear that God didn't author sickness and disease.

You need to blame the other guy that no one wants to believe in

either...Satan...since he was the willful deceiver from the beginning.

There is far more going on around us at all times than we can actually

see with our eyes.

Jay

Re: A thought/question regarding religion & SMA

PurplGurl3@... wrote:

>My belief system tells me that God already decided this was right for

me a

>long time ago, and that I agreed to it

>

>

God gave you SMA but you got the choice to agree to have SMA? I'm

baffled. I would've definitely checked the " No " box on the divine

application form.

But in all seriousness, I could never believe in an evil God that

decides to give people SMA. If a loving God is above me, he would never

torture people like that.

Nick

A FEW RULES

* The list members come from many backgrounds, ages and beliefs So all

members most be tolerant and respectful to all members.

* Some adult language and topics (like sexual health, swearing..) may

occur occasionally in emails. Over use of inappropriate language will

not be allowed. If your under 16 ask your parents/gaurdian before you

join the list.

* No SPAMMING or sending numerous emails unrelated to the topics of

spinal muscular atrophy, health, and the daily issues of the disabled.

Post message:

Subscribe: -subscribe

Unsubscribe: -unsubscribe

List manager: (Sexy Mature Artist) Email: Esma1999@...

oogroups.com

List manager: (Sexy Mature Artist) Email: Esma1999@...