Don't know where to post this but....

[DavidCookIsMyBaby14]

do u guys know of any wish foundations? i did make-a-wish once, but then they wouldnt take me anymore, so ya. i was hoping you guys could tell me some or give me some webpages to look at others and stuff.

thanks <33

[Barb]

Why do you need/want a wish? I especially don't get it if you were already granted one by Make A Wish. If I am understanding your post right then you are saying that you got a Make A Wish but now want to find another organization to grant you a free wish...

I sure hope that is not what you are asking because that would be unbelievably selfish in my opinion. Just my two cents....

[Dodger67]

I don't know how it works in your country but here in South Africa the Make a Wish people only deal with people who are actually dying.

[Barb]

They have expanded recently here to include long term illnesses....C was actually offered one

[Dodger67]

I want to spit, scream and/or hit something/one when I see/hear SB described as an "illness".

[Barb]

Sorry, that is what MAW considers it :6775:

[Dodger67]

Relax Barb, I won't hit you.
Its the pitty parties that make me mad!

Don't give me charity, give me a job!

[eng188]

Would surprise me that MAW is doing that. I have heard rumors that Special Olympics is including quite a few non-MR's. Funny, since I thought they were MR only.

Dammit, why didn't I get a hug from some random volunteer when I was in wheelchair t&f with the NWAA?! *whine*

[Dodger67]

In the docu-movie "Murderball" http://www.imdb.com/title/tt0436613/ there is a really cool quote about the difference between Special Olympics and real sport:
"We're not going for a hug. We're going for a fucking gold medal."

I'm sorry to say this but the OP of this thread lost a whole lot of "brownie points". I have nothing but contempt for people who openly solicit charity without a good reason - and trying to go back for seconds is just too much!
Did you seriously expect to recieve a sympathetic response on THIS forum of all places?:sign0009:

On a lighter note, I'd love to get hugs from random volunteers :happy065: As long as there's some good quality t&a involved! I've never been much good at t&f!

[Barb]

Relax Barb, I won't hit you.
Its the pitty parties that make me mad!

Don't give me charity, give me a job!
Oh, I totally agree.

Have any of you ever had the experience of being offered money? That has happened to us three times that I can remember...always catches me so off guard. A security guard did it in the mall once, I was like man, I have got to start dressing my kids better....lol. :arrgh:

[eng188]

The money thing has happened to me like 35 times. In fact, once, she succeeded in putting the money in my pocket and running away. I then just threw away the money. Maybe I could have anonymously donated it to charity, though (I do support cystic fibrosis and public radio). But I get to boiling and shaking when that happens.

An interesting question---maybe it should be in a new thread, but this convo seems to be going that way---I am an atheist. I know, and respect, that some of you are christains. It seems to be a well-known phenomenon that disabled folks seem to be prey for those that want to give us religious pamphlets or religious lectures. Do some of you fall victim to that as well? Maybe from Xians of other denominations than you? I dunno. I laugh it off.

[Dodger67]

I get very irritated at people who try to preach to me or even worse - pray to "heal" me!
I respect other people's religious beliefs, but I'm not interested in being converted.
My own beliefs are nobody else's business.

[ZoesMom]

Before I found out about Zoe I didn't belive in "God" and haven't since my Grandpa who i was very close to died the day before my 16th birthday. When i found out about Zoe it just confirmed my not beliving in him. I thought how could "God" do this to an innocent infant who hasn't even been born. When I found out i also thought that I might be being punished for what i thought and did when i first found out i was even pregnant. When I first found out I didn't want another baby. Things with my husband and I went going that great. I was also working a third shift job and i had i would say two or three drinks (not all at once) before I decided that i wanted this baby even if my husband and i didnt work out. I did like the reply to a post i saw on here that said that "God gives special babies to special people because he wouldnt give something to you that you couldnt handle." I may not believe in "God" but if I did I would think that to be oh so true. Sorry this was so long but I thought I would get it out.

[eng188]

I take an apple. I drop it. It falls. I wonder "Why would God be so intent on the concept of gravity?". :sign0023:

But I digress. The local WalMart was VERY good at addressing me as sir today. I was amazed.

[Dodger67]

I once went to see a movie and the ticket seller referred to my date as "your nurse"!:arrgh:

Do I really seem like the kind of person who would have a "drool wiper" following me around everywhere?:Banane21:

[Barb]

I once went to see a movie and the ticket seller referred to my date as "your nurse"!:arrgh:

Do I really seem like the kind of person who would have a "drool wiper" following me around everywhere?:Banane21:

That is both hilarious and horrifying.

[stub20]

About the whole religious thing, I have been stopped so many times in the street and things. Some have even like done a kamikaze sort of thing jumping in front of my chair when im doing my training; just to get me to stop and ask me whether id take part in these "healings" through god, it gets very annoying.

[ollieholmes]

We went to a fete today and someone with one of these deep heat pad things made a beeline for us. I need one more than my partner does.

We also had someone trying to sell us swimming lessons, my girlfreind is a chamion swimmer.

[Justy Me]

LOL oh gosh, it is amusing- and yet irritating- at the same time, to see how so many of us have dealt with the same kind of weirdos out there. And people think WE have problems. I have a member in my family ( not blood related but have known him my whole life) who from day one has told me if I want Jesus to forgive me for my sins, he will and i will walk. OH OK so I am in this chair cuz of some inexcusable act that I committed, when, exactly??? I have received lil words of wisdom here and there from people about how to be healed, etc. OH and one time, a lady offered to pray with me in the supermarket, we were in the middle of the aisle and everything mind u. I do believe in God, but I do not think that I am in anyway dealing with SB as a result of sinning against Him. People seem to think they are His messengers. Whatever lol

[eng188]

I think folks like that who offer to pray or help without asking permission just want to look good in front of their pastor/fellow xians/god.

[Dodger67]

Just like the Pharisees that Jesus criticised for making a public spectacle of their elaborate prayer. (Don't ask me for a direct quote or reference but it is somewhere in the gospels.)

Anyway I'm not really willing to discuss my own beliefs here - or anywhere else for that matter, its private.

[lolathechecker]

when i was pregnant, my dads crazy preacher friend invited us over for dinner and made everyone stand in a circle with their hands on my belly and pray for god to "fix the baby" then he told me to never speak about her spina bifida because i would "speak it into existence" then he assured us all that the baby would be born perfectly healthy. hes a little wacky, but a nice guy...:sign0023:
and to the new moms: dont you hate those "what happened to its head?" people?! i drives me nuts, so ive started telling people that i dropped her.:scream:

[stellalatella]

Lola, when people ask "what happened to it's head"? Ask them, "WHAT HAPPENED TO YOUR MANNERS?"

Just a suggestion!
Stella

[Dodger67]

How do you like this one?

"Well you see, there was this mosquito, you should have seen it, it was the biggest mosquito I have seen in my entire life, believe me it was simply massive and well you see, I was busy fixing dinner, I was jointing some leftover Christmas/Thanksgiving turkey... So anyway here I was busy in the kitchen and she/he was sleeping on the table, you know, in her/his carrier, at the other end of the kitchen table... Well you see it was a really huge monster mosquito and well, there I was with bits of turkey all over the place all I had handy to swat the gigantic mosquito that was draining the blood out of my little darling, was this 10 inch meat cleaver...."

That should shut them up!

I posted this 4 days ago and haven't got even one little giggle? :33a:
Don't you guys & gals like me anymore?:kleenex:

[printemps]

I try to keep an open mind - I had a friend take me to her church service where they did a faith healing thing I guess she was hoping I would ask to be healed. I did not want to do it so I politly declined . I guess she meant well I was appreciative and slightly bemused by the whole thing .

[stub20]

lol, i like ur joke Dodger, you get reps from me for that

[angel]

Oh, I totally agree.

Have any of you ever had the experience of being offered money? That has happened to us three times that I can remember...always catches me so off guard. A security guard did it in the mall once, I was like man, I have got to start dressing my kids better....lol. :arrgh:

I have been absent for awhile so i am a little behind but i have to comment on this. That has always been a huge problem for me. It is funny my son went to sing christmas carols with the cub scouts at a nursing home last christmas. I actually had to leave early before any of the older people left so this wouldn't happen. They always want to give me a dollar or a quarter like they would their grandchild ( i am in my freakin 30's!!!) I didn't want to get into it and it always happens so i told one of the parents and they watched my son till they all got outside where i was. I have also had services offered to me for free. I took my first car to get inspected for hand controls when i first started driving. I went in told them what i needed and they worked on the car. The owner of the shop said there will be no charge. I asked him why because when i called they told me the amount. He said you came in here to take care of business you didn't ask me to feel sorry for you and do it for free like a lot of people would. I couldn't believe that people would do that. Maybe i have to much pride but i would never ask for anything for free. I wouldn't even get a disabled license plate until i was in college and HAD to have one. Other people need it more than i do. I insisted to pay and wouldn't leave until he let me. I don't want anything for free i just want to make my way like everyone else.

Angel

[angel]

I get very irritated at people who try to preach to me or even worse - pray to "heal" me!
I respect other people's religious beliefs, but I'm not interested in being converted.
My own beliefs are nobody else's business.

Thank GOD i am not the only one this happens to. I have this happen to me all the time. I to respect other's religious beliefs but there is a line and people cross it all the time.

One thing i get is total strangers from time to time will come up to me at a store or something and say "god gave me a vision and i can see you walking one day" How the hell are you supposed to reply to that??? I usually just walk away. Not trying to be rude or anything but i am fine like i am. Why do people assume i want to be like them. I am fine with me the way i am!!

Now I really do get irritated when people actually want to lay their hands on me to pray for me. I grew up in a church where this was common practice. I HATED it when some one would come to guest speak at the church because they ALWAYS wanted to try and get me healed. (and my mom wonders why i don't go anymore) This happened to me at home depot not to long ago a man walks up to me in the parking lot as i am climbing into my truck. When he asked i said no thank you i would rather you didn't and he kept insisting!!!! I finally told him to f%^$ off becuase he was way out of line!!!

Angel

[angel]

when i was pregnant, my dads crazy preacher friend invited us over for dinner and made everyone stand in a circle with their hands on my belly and pray for god to "fix the baby" then he told me to never speak about her spina bifida because i would "speak it into existence" then he assured us all that the baby would be born perfectly healthy. hes a little wacky, but a nice guy...:sign0023:
and to the new moms: dont you hate those "what happened to its head?" people?! i drives me nuts, so ive started telling people that i dropped her.:scream:

Some dumb woman came up to my mom at a store when i was a baby and said "Did you do drugs and mess up that baby?" My mom being the passive woman she is just said no and walked away. I hope i could react that well but i have my doubts if i were in the same situation!!

As for the crazy preacher types. When my son was born and they found something was wrong (sb occulta) everyone was so devistated with the exception of me and my mom because we have delt with my myleo so the occulta didn't really seem like that big of a deal. Anyway this one guy that went to my church came in making a HUGE spectical being really loud praying crying the whole 9 yards. This baby was supposed to grow up to take care of her blah blah blah. I finally just screamed get this ASSHOLE out of my room!!!!!!! I think it was the drugs i was on after his birth that allowed me to say EXACTLY what was on my mind without reservation lol.
Angel

[KMkaggerud]

I was wondering if anyone on this forum that uses a wheelchair has this happen to them also. The back of my ankles get cut from the foot rests is my feet slip off the foot rests or when I am moving from my wheelchair and my ankles hit the foot rests. I was thinking of putting rubber tubing along the edges to help with the problem. Does anyone have any other suggestions? Kristin

[Dodger67]

Yes use rubber tubing or whatever it takes to prevent injury.

Why is this post here?
It is completely unrelated to any other posts in this thread. Please post in the apropriate sections. Also create a new thread if your post is not a reply to another post. As this is a wheelchair related post so it should really be in the "Equipment" section.

[KMkaggerud]

Dodger, I didn't think it should go in the equipment section that is why I placed it here.

[Dodger67]

No problem. Don't worry about it.
If you need help with how to start a new thread just drop me a line.

[Emelsu]

Wow I have gone to a Baptist church my whole life and I have never had any of those types of things happen to me. well except one time I went to a church with my friend (a Methodist church) and the pastor brought all the kids to the front because we were about to do charity work and she wanted to do a special prayer for us and she touched everyone’s shoulders (the left one then the right one)during the prayer but when she came to me she touched my left shoulder and then wacked me in the head then touched my right shoulder so after the prayer I asked her why she hit me so hard and she said "I was getting the sins out of you that caused you to be a cripple, now all you have to do is be a better person and you will be healed" so after that I just stayed a member of my church and didn’t go back to hers.

[dahliafaolan]

Oh I could tell some stories about the laying on of hands people. I had this one girl that was working as my attendant and she belonged to one of these laying on of hands, speaking in tongues kind of churches. Now I believe that everyone has the right to their own beliefs, but no one has the right to push their belief onto me. Well she asked me if it was ok for us to pray together. It was lunch time so I figured that she just wanted to say grace. Next thing I know she was trying to lay hands on me and speaking in tongues. I thought she was having a seizure! Well then she explains about the whole speaking in tongues thing. I give her the "You're a crazy woman" look and went on with my day, thinking that it was just her wanting to do something nice and that her conscience or whatever would be appeased and I would never have to hear about it ever again. Boy, was I ever wrong. She asked me to go to her church with her one day. Well I'm a firm believer in being open to different faiths and religious experiences so I agree to go, but I told her that if so much as one person tried to lay hands on me or went Billy Graham on me, I would walk right out and hitchhike home. Needless to say, I had to end up calling my parents to drive me home.

[eng188]

I want to spit, scream and/or hit something/one when I see/hear SB described as an "illness".

I can brush that off, but I hate that SB is included now in MAW. Why does a person with SB automaticalydeserve a big huge wish at someone else's expense?

[Summer25]

I can brush that off, but I hate that SB is included now in MAW. Why does a person with SB automaticalydeserve a big huge wish at someone else's expense?

I have to totally disagree. When I was about 12 I was in and out of the hospital about 10 times in a 3 month period. Not including a 2 week stent about 6 months before that. A nurse at the hospital suggested my mom write into what at the time was The Starlight Foundation. They basically were the same as Make A Wish, but with different rules. I didn't get that wish until 2000 at the age of 14 about to be 15 because I was there during sept 11th 2000, my birthday was the 18th. That was probably the best week of my life. I went to the MTV Music Awards in NYC. Yes, it was about 2 years after all of the surgeries, but it allowed me to have fun away from the doctors. It allowed me to not think about what would happen when I went back to the real world. I actually had to have another surgery not long after that. But I can tell you I will remember every single detail of it for the rest of my life. Yes, we may not be terminal, but we deserve to have that time away from our lives as well. Especially with the way mine was at the time.

[eng188]

I'll gently agree to disagree, and explain. I have had 16 surgeries all over my spine, legs, and head in my 33 years. I've suffered a typical amount of pain for an SB, at least according to the cases I'm aware of. I've suffered debilitating depression that I almost haven't survived.

But still, I just prefer not to take such opportunities. I think I see your point, but to me it's just not the same as facing death, the ultimate unknown. As painful and scary as my life with SB has been at times, every moment is precious to me. Everything from simply posting to this board, to seeing Mia Hamm and others in person at several U.S. Women's National Team football matches.

After having made it this far in my post, I guess what irks me most is being lumped in with more obviously terminal conditions. Yes, SBs can run into some major issues (kidney failure, skin breakdowns, etc) that can kill us. In the past 16 months, 5 of my acquaintances have died thusly, by 30. But it's not a given, and we are not just marking time. Or at least we shouldn't be.

So, yes, to be relevant to this thread, being lumped in with completely different, and inherently more severe, conditions irks me.

[Emelsu]

Would surprise me that MAW is doing that. I have heard rumors that Special Olympics is including quite a few non-MR's. Funny, since I thought they were MR only.

Dammit, why didn't I get a hug from some random volunteer when I was in wheelchair t&f with the NWAA?! *whine*
if "MR" meant meantally reatrded then yes they are taking people who aren't. I was in the special olympics in third grade because I was on an IEP so I could do physical therapy during a class at school. I didn't even know what it was at that time and I was never put up against someone that wasn't physically handicapped so it made it even. it was actually great because it was like a field day that I could participate in and have a chance at winning.

[eng188]

OK. Well. I am just used to a different sports atmosphere. The NWAA (now Wheelchair Sports USA), didn't disallow mentally retarded, but the emphasis was on the physical disability, not mental. You were grouped with people of similar physical impairment/capability, and it was taken very seriously by many. It was an eventual springboard to the Paralympics.

Like your group, it was a field day out. Well, often a weekend or more, and it gave you a chance to compete and win a medal.

It was just another way of participating in disabled sports. Special Olympics just didn't fit me at the time ('89-'90). But I'm glad you were able to benefit.