Re: Look at things another way

[Guest guest]

Pete, I agree...the day the family went to Six Flags and I had my chair was

very different from the many days I have gone without it. Without the chair I

grow tired and hit the level of pain where I do notice it. If I wanted to

walk I had 5 eager volunteers to ride in the chair, too. It was hard for me to

get to the point where I said OK, I could use a chair. I actually recall the

day, in tears when I told my husband, " Ok, I NEED a chair " . I don't feel bad

anymore about it. Facts, is I feel relieved knowing I have it. My only problem

now is getting my chair from my house, in the van, and out of the van when I

have reached my destination. We do have places that will help with house

ramps but the wait list is a year or more! I have yet to find help getting a

ramp or lift for my van though. Any ideas????

Hugs!

Donna

[Guest guest]

Veri,

When got hers. I wasn't feeling to well about it. But it helped

her. I seen her mobility was limited and with a Wheelchair her mobility would

be better. When she was able to put the Wheelchair away. She said Mom I do

not want to see it again. I said well darlin. If you need it. It's there. She

said well I am going to walk as much as I can before that. She was 13 at that

time. Times change and minds do to. She will walk as long as her legs let

her. She will walk as long as the Fatigue stays away. But when it comes to

Walmart or say Six Flags. You can bet will find the Scooter and use it.

Her using it doesn't make her feel bad. Actually she said it makes her

able to do what she needs to do. As kids get older. They learn that with just

using a scooter or Wheelchair their life is alittle easier. GREAT.

I have thought back about how 1 Person's Idea has became a world of

happiness. If we lived back in the 1800's. What would life be like. Most

would

be STUCK. Miserable and depressed. In the 1950's Some just still sat around

not able to get where they wanted. Still Stuck. If you had a Mobility problem.

You had to depend on others to carry you to point A to point B. or write a

list for someone else to get. Since you felt that the Disease put you there in

a place with only 4 walls. You were limited. Depressed? Your right. No light

at the end of a Tunnel then.

IT " S 2006. Younger kids need to be Mobile. Older people need to be

Mobile. And all in between. My thinking now on it. Well at least is at

home

sitting around feeling depressed. She has Choices now and more so than 10

years ago. So if your child needs a Wheelchair get it and do not feel depressed

about it. Shoot Go by Walmart and get some stickers and dress it up to the

liking of your child. It's fun. The child will like it toooo. Put a sign on it

saying watch out I am coming through lololol.

My hubby was so I guess ashamed to use a scooter. use to say Ma I

want to go to the store but I can't cause I am hurting. Now that HURTs a

Mom's heart. That's a Limitation. That's as though this Disease has gotten

your

child in a box. No way out.

I took and carried her to my car and said if your willing baby.

Your going. I said even if I have to put you in a buggy. lololol. Well We made

it. She was so happy. That is when we found out Walmart had SCOOTERSSSSSS

lololol. She has not stopped since.

Now my hubby had stopped going places with us. Became a hermit. He would

say I can't walk the store. I got soooooooooo mad at him and so did .

I told him look I am willing to take you just to get out of the house. It's

your choice to sit on your behind. He told me a few weeks later. I need a

pair of shoes. I said well the store is open go get them. lololololol. He said

no you can buy me a pair. I finally put my foot down and said NO. If you want

them go to the store. lololol. He got dressed and said Can you go with me?

Well said ok let's go. My hubby was dreading this moment. But he wanted

a pair of shoes. jumped on one and took off to the MUSIC Dept. He

said that's ok I will make it on my own. He said ok I have to go to the Car. I

said NO you will sit on the scooter or you will walk home. lolololol. He sat

on it and been on one since to go shopping. lololol.

He lost out by being a stubborn man. He doesn't tell me he CAN'T do

something. Unless he wants to get me going on him. I think seeing feel

free to use a scooter and seeing how she manages has made him see thing's

differently

Robbin

[Guest guest]

I have been reading these posts about the wheelchair and so do not even remember

who started this. But I totally understand the feeing a parent will go through

when having to get a wheelchair for their child. Not that I am there because I

am not and I pray that my child never needs it. But I know that this is just

another heartbreak for the mom or dad. Just one more thing to remind us how our

child is limited. It is ok that we feel heartbroken for the limitations of our

child. But what is most important is what we do with that heartbreak. We take it

and we do what is necessary for our child. We do not stay depressed. We move on.

But it is a part of the process. If the mom does not feel a bit depressed or

heartbroken when these mile markers occure then she has quit feeling and then

she is not going to be doing all the best she can for her child. She will get

past that and will encourage her child and help them to be the best person they

can possibly be. So when I read that first post I truely felt for you and your

child. And I knew that you are doing what is best for your daughter because you

love her and you will continue to do all that you can. This list is the perfect

place for you to share those feelings.

Veri & d Jaye 12 poly

Re: Look at things another way

amen Pete-

I didnt know you were on this list!

Hope you and Alison are well!

Issadora

On 8/7/06, Fischer <pfischer@...> wrote:

>

> Please don't make getting a wheelchair a depressing event. I too

> had to deal with this specific topic as a child with arthritis.

>

> I was starting Junior High School, and just couldn't get around very

> well anymore. Sure i struggled around the neighborhood on crutches,

> and played a little sand lot baseball.. but i was wiped out, and in

> PAin after a half hour or so,

>

> I got a 3 wheeled scooter for the convienience of getting to

> classes, and other events that meant a lot of walk. (remember " a

> lot " is different to each and every one of us)

>

> The chair was not a depressing thing, it was a blessing. I was able

> to go out, down the street, be with friends, go shopping at the

> mall, see movies with my friends. It made me a Whole kid again.

>

> Please don't look at all the negatives in this disease. Look for

> the bright spots. As a kid we see,bear the pain, the mental

> anguish, being the outcast, and we also see how it affects our

> parents. Try to limit that added burden of our parents thinking a

> wheelchair is just another depressing event.

>

> Thanks, Pete JRA age 32 (DX 4)

>

> pfischer@... <pfischer%40dpaarchitects.com>

>

>

>

--

" I am not sick. I am broken. But I am happy as long as I can paint. "

--Frida Kahlo

[Guest guest]

Elaney has started using the scooters/wheelchairs at the new super wal-mart. It

is huge and I am glad she uses them. Sometimes we get strange looks and I am

just waiting for the first person to say something!!! Elaney was a little

scared to use the scooter and wanted to use the carts for little kids, but her

back side was hanging off and it just wasn't comfortable anymore!! So, we went

to Dillon's at night when few people were there and just drove it all over the

store until she felt comfortable!! We had a blast doing it and she only ran into

stuff twice. Now she hops right in and off we go! At first, it was a little sad

for me to see but I got over it knowing the she now has more freedom.---

& Elaney(12 poly)

Robbin40@... wrote: Veri,

When got hers. I wasn't feeling to well about it. But it helped

her. I seen her mobility was limited and with a Wheelchair her mobility would

be better. When she was able to put the Wheelchair away. She said Mom I do

not want to see it again. I said well darlin. If you need it. It's there. She

said well I am going to walk as much as I can before that. She was 13 at that

time. Times change and minds do to. She will walk as long as her legs let

her. She will walk as long as the Fatigue stays away. But when it comes to

Walmart or say Six Flags. You can bet will find the Scooter and use it.

Her using it doesn't make her feel bad. Actually she said it makes her

able to do what she needs to do. As kids get older. They learn that with just

using a scooter or Wheelchair their life is alittle easier. GREAT.

I have thought back about how 1 Person's Idea has became a world of

happiness. If we lived back in the 1800's. What would life be like. Most would

be STUCK. Miserable and depressed. In the 1950's Some just still sat around

not able to get where they wanted. Still Stuck. If you had a Mobility problem.

You had to depend on others to carry you to point A to point B. or write a

list for someone else to get. Since you felt that the Disease put you there in

a place with only 4 walls. You were limited. Depressed? Your right. No light

at the end of a Tunnel then.

IT " S 2006. Younger kids need to be Mobile. Older people need to be

Mobile. And all in between. My thinking now on it. Well at least is at

home

sitting around feeling depressed. She has Choices now and more so than 10

years ago. So if your child needs a Wheelchair get it and do not feel depressed

about it. Shoot Go by Walmart and get some stickers and dress it up to the

liking of your child. It's fun. The child will like it toooo. Put a sign on it

saying watch out I am coming through lololol.

My hubby was so I guess ashamed to use a scooter. use to say Ma I

want to go to the store but I can't cause I am hurting. Now that HURTs a

Mom's heart. That's a Limitation. That's as though this Disease has gotten your

child in a box. No way out.

I took and carried her to my car and said if your willing baby.

Your going. I said even if I have to put you in a buggy. lololol. Well We made

it. She was so happy. That is when we found out Walmart had SCOOTERSSSSSS

lololol. She has not stopped since.

Now my hubby had stopped going places with us. Became a hermit. He would

say I can't walk the store. I got soooooooooo mad at him and so did .

I told him look I am willing to take you just to get out of the house. It's

your choice to sit on your behind. He told me a few weeks later. I need a

pair of shoes. I said well the store is open go get them. lololololol. He said

no you can buy me a pair. I finally put my foot down and said NO. If you want

them go to the store. lololol. He got dressed and said Can you go with me?

Well said ok let's go. My hubby was dreading this moment. But he wanted

a pair of shoes. jumped on one and took off to the MUSIC Dept. He

said that's ok I will make it on my own. He said ok I have to go to the Car. I

said NO you will sit on the scooter or you will walk home. lolololol. He sat

on it and been on one since to go shopping. lololol.

He lost out by being a stubborn man. He doesn't tell me he CAN'T do

something. Unless he wants to get me going on him. I think seeing feel

free to use a scooter and seeing how she manages has made him see thing's

differently

Robbin

[Guest guest]

Look at it this way - if someone makes a comment, that is an opportunity

to educate someone that Kids Get Arthritis Too!

________________________________

From: [mailto: ] On

Behalf Of Pickering

Sent: Tuesday, August 08, 2006 2:43 PM

Subject: Re: Look at things another way

Elaney has started using the scooters/wheelchairs at the new super

wal-mart. It is huge and I am glad she uses them. Sometimes we get

strange looks and I am just waiting for the first person to say

something!!! Elaney was a little scared to use the scooter and wanted to

use the carts for little kids, but her back side was hanging off and it

just wasn't comfortable anymore!! So, we went to Dillon's at night when

few people were there and just drove it all over the store until she

felt comfortable!! We had a blast doing it and she only ran into stuff

twice. Now she hops right in and off we go! At first, it was a little

sad for me to see but I got over it knowing the she now has more

freedom.--- & Elaney(12 poly)

Robbin40@... <mailto:Robbin40%40aol.com> wrote: Veri,

When got hers. I wasn't feeling to well about it. But it helped

her. I seen her mobility was limited and with a Wheelchair her mobility

would

be better. When she was able to put the Wheelchair away. She said Mom I

do

not want to see it again. I said well darlin. If you need it. It's

there. She

said well I am going to walk as much as I can before that. She was 13 at

that

time. Times change and minds do to. She will walk as long as her legs

let

her. She will walk as long as the Fatigue stays away. But when it comes

to

Walmart or say Six Flags. You can bet will find the Scooter and

use it.

Her using it doesn't make her feel bad. Actually she said it makes her

able to do what she needs to do. As kids get older. They learn that with

just

using a scooter or Wheelchair their life is alittle easier. GREAT.

I have thought back about how 1 Person's Idea has became a world of

happiness. If we lived back in the 1800's. What would life be like. Most

would

be STUCK. Miserable and depressed. In the 1950's Some just still sat

around

not able to get where they wanted. Still Stuck. If you had a Mobility

problem.

You had to depend on others to carry you to point A to point B. or write

a

list for someone else to get. Since you felt that the Disease put you

there in

a place with only 4 walls. You were limited. Depressed? Your right. No

light

at the end of a Tunnel then.

IT " S 2006. Younger kids need to be Mobile. Older people need to be

Mobile. And all in between. My thinking now on it. Well at least

is at home

sitting around feeling depressed. She has Choices now and more so than

10

years ago. So if your child needs a Wheelchair get it and do not feel

depressed

about it. Shoot Go by Walmart and get some stickers and dress it up to

the

liking of your child. It's fun. The child will like it toooo. Put a sign

on it

saying watch out I am coming through lololol.

My hubby was so I guess ashamed to use a scooter. use to say Ma

I

want to go to the store but I can't cause I am hurting. Now that HURTs a

Mom's heart. That's a Limitation. That's as though this Disease has

gotten your

child in a box. No way out.

I took and carried her to my car and said if your willing baby.

Your going. I said even if I have to put you in a buggy. lololol. Well

We made

it. She was so happy. That is when we found out Walmart had

SCOOTERSSSSSS

lololol. She has not stopped since.

Now my hubby had stopped going places with us. Became a hermit. He would

say I can't walk the store. I got soooooooooo mad at him and so did

.

I told him look I am willing to take you just to get out of the house.

It's

your choice to sit on your behind. He told me a few weeks later. I need

a

pair of shoes. I said well the store is open go get them. lololololol.

He said

no you can buy me a pair. I finally put my foot down and said NO. If you

want

them go to the store. lololol. He got dressed and said Can you go with

me?

Well said ok let's go. My hubby was dreading this moment. But he

wanted

a pair of shoes. jumped on one and took off to the MUSIC Dept.

He

said that's ok I will make it on my own. He said ok I have to go to the

Car. I

said NO you will sit on the scooter or you will walk home. lolololol. He

sat

on it and been on one since to go shopping. lololol.

He lost out by being a stubborn man. He doesn't tell me he CAN'T do

something. Unless he wants to get me going on him. I think seeing

feel

free to use a scooter and seeing how she manages has made him see

thing's

differently

Robbin

[Guest guest]

yeh.... I have learned to deal with people staring.... through sarcasm....

and sometimes education if they get close enough... lol.

B/c i can walk some.... and will get out of my wheelchair.. or when I have

my manual chair... i will push it along like a walker and always have a

comfortable seat..... anyways... I have had people treat me pretty

badly b.cim 'walking' or can 'get up'.... i can't believe the

assumptions that people

will make and then get angry when it doesnt fit their faulty perceptions!

Anyways, there have been times where I just can't handle the pressure so

when someone says.. OPh you can walk.. or something like that... in a tone

of 9Than WHY are you in the wheelchair: I will just say... Ohhhh I can

walk.... Praise the lord... lol...... At least it makes me laugh.... while

they sit with their mouth hanging open....

I feel like people really need to go to a arthritis camp or ajao.. I never

forget the florida conference (I lost my camera unfortunately) but I had

this great picture where a large geoup of us YA's went to one of the cafe's

for breakfast. The majoirty of us that used wheelchairs/scooters etc could

get out and we parked them along this transparent glass wall. It looked like

a wheelchair parking lot! It was so funny to me. I took a picture. So Here

we all were walking but also had our mobility stuff around when we needed. I

really wanted to know what others not involved in the conference were

thinking! =)

I used to use the carts in wallmart or at the mall... and sometimes people

would give me dirty looks. I would just stare at them right back. If someone

asked or looked curious... sometimes I used it as an educational moment.

Now, I can't stand the rental carts at most places b/c they make my joints

hurt even more than walking due to the lack of proper positioning so I have

my own scooter and it makes life waaaay better. It took my mom longef to

accept. I wsnt the most accepting until I realized how nice it was to get

around, go out with friends and have less pain and struggle over everything.

Right now, I am reading this book... No Pity... by ph Shapiro. It is

about the disability civil rights movement and in the first chapter... he is

discussing the sociological issues with the idea of 'being in a wheelchair'

and how doctors and others see it as the worse possible thing that can ever

happen which of course pushes prejuduce and non-acceptance of needing to use

one to improve quality of life.. a think that people without pain often

don't think about.. It's a great book so far. Im loving it althogh b/c of my

many expereinces that have been negative.. Ive already cried several times!

Anyways... at the least..... it's fun to have a wheelchair race... haha....

Than again, i get tired of people asking me.. want to race... can I catch a

ride.. slow down... so on.... grrrrrr.... =)

FlyfreeIzzie.... my email name... for a reason.. hehe... zooom

I

On 8/8/06, Tepper, Michele <MTepper@...> wrote:

>

> Look at it this way - if someone makes a comment, that is an

> opportunity

> to educate someone that Kids Get Arthritis Too!

>

> ________________________________

>

> From: < %40> [mailto:

> < %40>] On

> Behalf Of Pickering

> Sent: Tuesday, August 08, 2006 2:43 PM

>

> < %40>

> Subject: Re: Look at things another way

>

> Elaney has started using the scooters/wheelchairs at the new super

> wal-mart. It is huge and I am glad she uses them. Sometimes we get

> strange looks and I am just waiting for the first person to say

> something!!! Elaney was a little scared to use the scooter and wanted to

> use the carts for little kids, but her back side was hanging off and it

> just wasn't comfortable anymore!! So, we went to Dillon's at night when

> few people were there and just drove it all over the store until she

> felt comfortable!! We had a blast doing it and she only ran into stuff

> twice. Now she hops right in and off we go! At first, it was a little

> sad for me to see but I got over it knowing the she now has more

> freedom.--- & Elaney(12 poly)

>

> Robbin40@... <Robbin40%40aol.com> <mailto:Robbin40% <Robbin40%25>

> 40aol.com> wrote: Veri,

>

> When got hers. I wasn't feeling to well about it. But it helped

> her. I seen her mobility was limited and with a Wheelchair her mobility

> would

> be better. When she was able to put the Wheelchair away. She said Mom I

> do

> not want to see it again. I said well darlin. If you need it. It's

> there. She

> said well I am going to walk as much as I can before that. She was 13 at

> that

> time. Times change and minds do to. She will walk as long as her legs

> let

> her. She will walk as long as the Fatigue stays away. But when it comes

> to

> Walmart or say Six Flags. You can bet will find the Scooter and

> use it.

> Her using it doesn't make her feel bad. Actually she said it makes her

> able to do what she needs to do. As kids get older. They learn that with

> just

> using a scooter or Wheelchair their life is alittle easier. GREAT.

> I have thought back about how 1 Person's Idea has became a world of

> happiness. If we lived back in the 1800's. What would life be like. Most

> would

> be STUCK. Miserable and depressed. In the 1950's Some just still sat

> around

> not able to get where they wanted. Still Stuck. If you had a Mobility

> problem.

> You had to depend on others to carry you to point A to point B. or write

> a

> list for someone else to get. Since you felt that the Disease put you

> there in

> a place with only 4 walls. You were limited. Depressed? Your right. No

> light

> at the end of a Tunnel then.

> IT " S 2006. Younger kids need to be Mobile. Older people need to be

> Mobile. And all in between. My thinking now on it. Well at least

> is at home

> sitting around feeling depressed. She has Choices now and more so than

> 10

> years ago. So if your child needs a Wheelchair get it and do not feel

> depressed

> about it. Shoot Go by Walmart and get some stickers and dress it up to

> the

> liking of your child. It's fun. The child will like it toooo. Put a sign

> on it

> saying watch out I am coming through lololol.

> My hubby was so I guess ashamed to use a scooter. use to say Ma

> I

> want to go to the store but I can't cause I am hurting. Now that HURTs a

>

> Mom's heart. That's a Limitation. That's as though this Disease has

> gotten your

> child in a box. No way out.

> I took and carried her to my car and said if your willing baby.

> Your going. I said even if I have to put you in a buggy. lololol. Well

> We made

> it. She was so happy. That is when we found out Walmart had

> SCOOTERSSSSSS

> lololol. She has not stopped since.

> Now my hubby had stopped going places with us. Became a hermit. He would

>

> say I can't walk the store. I got soooooooooo mad at him and so did

> .

> I told him look I am willing to take you just to get out of the house.

> It's

> your choice to sit on your behind. He told me a few weeks later. I need

> a

> pair of shoes. I said well the store is open go get them. lololololol.

> He said

> no you can buy me a pair. I finally put my foot down and said NO. If you

> want

> them go to the store. lololol. He got dressed and said Can you go with

> me?

> Well said ok let's go. My hubby was dreading this moment. But he

> wanted

> a pair of shoes. jumped on one and took off to the MUSIC Dept.

> He

> said that's ok I will make it on my own. He said ok I have to go to the

> Car. I

> said NO you will sit on the scooter or you will walk home. lolololol. He

> sat

> on it and been on one since to go shopping. lololol.

> He lost out by being a stubborn man. He doesn't tell me he CAN'T do

> something. Unless he wants to get me going on him. I think seeing

> feel

> free to use a scooter and seeing how she manages has made him see

> thing's

> differently

> Robbin

>

>

[Guest guest]

Well said Veri! I would be saddened more than I can express if had to

use a wheelchair. I would, however be grateful for the availability of a

wheelchair or scooter should the need arise - grateful that he would have the

mobility and freedom necessary for all of us. That doesn't mean I would be

happy about it - nor would I let it keep me down long, but I would be positive

and direct about it with . Should he be depressed about it, I would

encourage him to share his feelings and share mine, and help him look for ways

to deal with his feelings and appreciate what he has - as I have done with every

hurdle he has had to cross. There is good and bad in everything - most of

life's lessons are prime examples of this - even those not related to illness,

JRA and many of the monsters that we face. There are many times when the

lessons I work hardest on with is the ability to appreciate what we have

- and we have so much to appreciate! Not long ago told me that if he

didn't have arthritis that there are many friends he wouldn't have made through

JRA and other avenues related to our JRA journey & he said to not know these

people would make him sad - so he gets it. There are other examples of this

learning process that I have seen in him that makes me so very proud.

I guess I would look at it much as I did when had his compression

fracture last year - and he had to give up baseball for awhile - and at the time

it was unclear how long it would be before he would be able to play ball again -

in fact he was pretty much sidelined from all physical activity for quite

awhile. That evening, when the reality sank in and sat on my lap and

cried for at least an hour - possibly longer. I cried with him part of that

time, and then said he thought I was crying when I excused myself from

the Doctor's office that day & I told him that I was. He then asked me why and

I told him that I wished it was me - that I could take all of it from him, and

then said " Because there are some things worth crying over " Which is true - but

there is also a time to stop crying and move on. When couldn't play, he

went to every game (in uniform) - kept statistics for his teammate and cheered

them on. He looked for how he could participate and be involved. He also

continued to read and learn as much as possible about his beloved game.

Val

Rob's Mom (8,systemic)

Re: Look at things another way

amen Pete-

I didnt know you were on this list!

Hope you and Alison are well!

Issadora

On 8/7/06, Fischer <pfischer@...> wrote:

>

> Please don't make getting a wheelchair a depressing event. I too

> had to deal with this specific topic as a child with arthritis.

>

> I was starting Junior High School, and just couldn't get around very

> well anymore. Sure i struggled around the neighborhood on crutches,

> and played a little sand lot baseball.. but i was wiped out, and in

> PAin after a half hour or so,

>

> I got a 3 wheeled scooter for the convienience of getting to

> classes, and other events that meant a lot of walk. (remember " a

> lot " is different to each and every one of us)

>

> The chair was not a depressing thing, it was a blessing. I was able

> to go out, down the street, be with friends, go shopping at the

> mall, see movies with my friends. It made me a Whole kid again.

>

> Please don't look at all the negatives in this disease. Look for

> the bright spots. As a kid we see,bear the pain, the mental

> anguish, being the outcast, and we also see how it affects our

> parents. Try to limit that added burden of our parents thinking a

> wheelchair is just another depressing event.

>

> Thanks, Pete JRA age 32 (DX 4)

>

> pfischer@... <pfischer%40dpaarchitects.com>

>

>

>

--

" I am not sick. I am broken. But I am happy as long as I can paint. "

--Frida Kahlo

[Guest guest]

Veri,

I was the starting point and you have explained it beautifully. I am totally

okay with a w/c increasing her ability to do what she wants. In fact, I have

encouraged her in the past but she doesn't want to be different. I finally

talked her into the disabled pass and now she is grateful to have it (and her

friends actually think it is cool). But it is the actual process of purchasing

one. My grandpa had JRA, long before they had decent treatment. His hips, knees

etc were horrible until they finally got around to better types of replacements.

We joined the Enbrel study before it was readily available so hopefully she

would not need replacements and a wheelchair like he did. We have been

pro-active (like parents do) etc. but it hurts to think that with all she has

been through and all the medicines she takes that she still needs one. I am not

against her having one, it just stinks that she needs one. And I guess even

though I know in my mind that her joints won't magically

repair themselves, that she is destined for joint replacement etc the dreamer

in me hopes and prays that she will be healed fully and will no longer need the

treatments, the medications, the therapy etc and she will be back to dancing on

pointe and doing everything she dreams without pain, fatigue, swelling etc. I

can't convey my thoughts fully through e-mail but yes, the thought that she

actually needs the w/c is a depressing thought, but the fact that she will fully

enjoy herself while we are on vacation will be wonderful, that she will be able

to do everything that we planned and won't have to quit early that is a

wonderful thought. But, yes the thought of it, is a heartbreak but that doesn't

mean I won't celebrate her enjoying life. I just really hoped we would move pass

needing the wheelchair, that she would receive a miracle healing and we would

move on. If I give up that hope, I give up some of the fight and I never plan on

doing that. I hope this makes some sense.

e, mom to joe 19 poly + lupus

veristroud@... wrote:

I have been reading these posts about the wheelchair and so do not

even remember who started this. But I totally understand the feeing a parent

will go through when having to get a wheelchair for their child. Not that I am

there because I am not and I pray that my child never needs it. But I know that

this is just another heartbreak for the mom or dad. Just one more thing to

remind us how our child is limited. It is ok that we feel heartbroken for the

limitations of our child. But what is most important is what we do with that

heartbreak. We take it and we do what is necessary for our child. We do not stay

depressed. We move on. But it is a part of the process. If the mom does not feel

a bit depressed or heartbroken when these mile markers occure then she has quit

feeling and then she is not going to be doing all the best she can for her

child. She will get past that and will encourage her child and help them to be

the best person they can possibly be. So when I

read that first post I truely felt for you and your child. And I knew that you

are doing what is best for your daughter because you love her and you will

continue to do all that you can. This list is the perfect place for you to share

those feelings.

Veri & d Jaye 12 poly

Re: Look at things another way

amen Pete-

I didnt know you were on this list!

Hope you and Alison are well!

Issadora

On 8/7/06, Fischer <pfischer@...> wrote:

>

> Please don't make getting a wheelchair a depressing event. I too

> had to deal with this specific topic as a child with arthritis.

>

> I was starting Junior High School, and just couldn't get around very

> well anymore. Sure i struggled around the neighborhood on crutches,

> and played a little sand lot baseball.. but i was wiped out, and in

> PAin after a half hour or so,

>

> I got a 3 wheeled scooter for the convienience of getting to

> classes, and other events that meant a lot of walk. (remember " a

> lot " is different to each and every one of us)

>

> The chair was not a depressing thing, it was a blessing. I was able

> to go out, down the street, be with friends, go shopping at the

> mall, see movies with my friends. It made me a Whole kid again.

>

> Please don't look at all the negatives in this disease. Look for

> the bright spots. As a kid we see,bear the pain, the mental

> anguish, being the outcast, and we also see how it affects our

> parents. Try to limit that added burden of our parents thinking a

> wheelchair is just another depressing event.

>

> Thanks, Pete JRA age 32 (DX 4)

>

> pfischer@... <pfischer%40dpaarchitects.com>

>

>

>

--

" I am not sick. I am broken. But I am happy as long as I can paint. "

--Frida Kahlo

[Guest guest]

In a message dated 8/9/2006 3:39:44 A.M. Eastern Standard Time,

boundforlondon@... writes:

I am not against her having one, it just stinks that she needs one. And I

guess even though I know in my mind that her joints won't magically

repair themselves, that she is destined for joint replacement etc the

dreamer in me hopes and prays that she will be healed fully and will no longer

need

the treatments, the medications, the therapy etc and she will be back to

dancing on pointe and doing everything she dreams without pain, fatigue,

swelling etc.

I think this was conveyed wonderfully e and I am sure so many hear

feel the exact same way. After 36 years with this crud I also feel this way. I

think this statement speaks volumes!!!!

Hang tight!

Donna