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Hi all,

We had our local Walk this morning and it was pretty fun. It is the

first year for the walk here, so attendance was very low, about 50

people maybe. Four of the nine families in our little JA support

group were there. All of the JRA kids that walked did the full 3

miles!!! I had actually prepared Hunter in advance that he only had

to do the 1 mile, but he happily charged ahead and was the first one

to finish.

Hunter was one of the two Honorees and actually DID speak into the

microphone with a little story about when he first got JRA. My

husband said a few words and I read a poem I had written (included

below).

I was so excited to have raised a lot of money -- over $2700. I

have never done anything like this other than sell girl scout

cookies in the neighborhood. When I got home from the walk, in the

mail was yet another check and on-line from the web page was more

money donated this morning totalling another $200. I am very

fortunate to have friends with the compassion and financial ability

to give so much.

Hopefully the AF will figure out how to market their event around

here and be more successful every year.

Here is the poem I wrote, not perfect, but I think gets the point

across:

If only I didn't have to take lots of pills every day.

If only I didn't have to get weekly injections.

If only I could feel good every hour of every day.

If only I didn't always have to go to all kinds of doctors all the

time.

If only I didn't have to get blood taken every month.

If only my eyes weren't inflamed.

If only I didn't have to use special eye drops all the time.

If only I didn't have to take prednisone and get a huge face.

If only I didn't have to miss recess sometimes because I could

hardly stand.

If only I didn't have to crawl to get around sometimes.

If only I didn't always have to have heating pads nearby.

If only I didn't have to have a baby monitor by my side at night so

my parents could hear me call out.

Then I wouldn't get to see the tears of joy in my parents eyes when

I am playing soccer, or just running.

Then I wouldn't get to have my loving sisters dote over me.

Then I wouldn't get to see the compassion of my 2 year old sister as

she rubs my head when I'm down and says " it's OK Hunter " , or " it no

hurt Hunter " when I'm getting my shots.

Then I wouldn't get to see the pleasure in my sister andra's

eyes as she's running around the house to gather my heating pads or

water or whatever it is I need when I'm hurting.

Then I wouldn't get to know how much my friends cherish the times I

can play.

Then I wouldn't be able to really appreciate the good days I have

without heating pads or fevers.

Then I wouldn't comprehend how special my play dates are with my

friends or cousins.

Then I may not be as close to my two big dogs as I am.

Then I may not be as good a swimmer as I am.

Then I may not have known about the Arthritis Walk.

Then I may not have been able to raise a bunch of money to help

others with arthritis.

Then I wouldn't have had the opportunity to meet my wonderful

rheumatologist, Dr. Knibbe.

Then I wouldn't have met some wonderful friends through the Treasure

Valley Juvenile Arthritis Family Network

If only I didn't have juvenile rheumatoid arthritis, then I wouldn't

know how to begin to appreciate life.

Best to all of you,

Stacia and Hunter,8,systemic,iritis

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Guest guest

Hi Stacia,

Your poem brought tears to my eyes. Very beautiful. And I can so relate

to the sentiments you expressed. Thank you for sharing.

Aloha,

Georgina

staciar101 wrote:

> Hi all,

>

> We had our local Walk this morning and it was pretty fun. It is the

> first year for the walk here, so attendance was very low, about 50

> people maybe. Four of the nine families in our little JA support

> group were there. All of the JRA kids that walked did the full 3

> miles!!! I had actually prepared Hunter in advance that he only had

> to do the 1 mile, but he happily charged ahead and was the first one

> to finish.

>

> Hunter was one of the two Honorees and actually DID speak into the

> microphone with a little story about when he first got JRA. My

> husband said a few words and I read a poem I had written (included

> below).

>

> I was so excited to have raised a lot of money -- over $2700. I

> have never done anything like this other than sell girl scout

> cookies in the neighborhood. When I got home from the walk, in the

> mail was yet another check and on-line from the web page was more

> money donated this morning totalling another $200. I am very

> fortunate to have friends with the compassion and financial ability

> to give so much.

>

> Hopefully the AF will figure out how to market their event around

> here and be more successful every year.

>

> Here is the poem I wrote, not perfect, but I think gets the point

> across:

>

> If only I didn't have to take lots of pills every day.

>

> If only I didn't have to get weekly injections.

>

> If only I could feel good every hour of every day.

>

> If only I didn't always have to go to all kinds of doctors all the

> time.

>

> If only I didn't have to get blood taken every month.

>

> If only my eyes weren't inflamed.

>

> If only I didn't have to use special eye drops all the time.

>

> If only I didn't have to take prednisone and get a huge face.

>

> If only I didn't have to miss recess sometimes because I could

> hardly stand.

>

> If only I didn't have to crawl to get around sometimes.

>

> If only I didn't always have to have heating pads nearby.

>

> If only I didn't have to have a baby monitor by my side at night so

> my parents could hear me call out.

>

> …

>

> Then I wouldn't get to see the tears of joy in my parents eyes when

> I am playing soccer, or just running.

>

> Then I wouldn't get to have my loving sisters dote over me.

>

> Then I wouldn't get to see the compassion of my 2 year old sister as

> she rubs my head when I'm down and says " it's OK Hunter " , or " it no

> hurt Hunter " when I'm getting my shots.

>

> Then I wouldn't get to see the pleasure in my sister andra's

> eyes as she's running around the house to gather my heating pads or

> water or whatever it is I need when I'm hurting.

>

> Then I wouldn't get to know how much my friends cherish the times I

> can play.

>

> Then I wouldn't be able to really appreciate the good days I have

> without heating pads or fevers.

>

> Then I wouldn't comprehend how special my play dates are with my

> friends or cousins.

>

> Then I may not be as close to my two big dogs as I am.

>

> Then I may not be as good a swimmer as I am.

>

> Then I may not have known about the Arthritis Walk.

>

> Then I may not have been able to raise a bunch of money to help

> others with arthritis.

>

> Then I wouldn't have had the opportunity to meet my wonderful

> rheumatologist, Dr. Knibbe.

>

> Then I wouldn't have met some wonderful friends through the Treasure

> Valley Juvenile Arthritis Family Network

>

> If only I didn't have juvenile rheumatoid arthritis, then I wouldn't

> know how to begin to appreciate life.

>

> Best to all of you,

>

> Stacia and Hunter,8,systemic,iritis

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Congrats on your walk and all the $$ you raised. That is just great.

Beautiful poem - the line about running hit me and now I've got tears

again. Good job! Michele ( 17,pauci & spondy)

Boise Arthritis Walk

Hi all,

We had our local Walk this morning and it was pretty fun. It is the

first year for the walk here, so attendance was very low, about 50

people maybe. Four of the nine families in our little JA support

group were there. All of the JRA kids that walked did the full 3

miles!!! I had actually prepared Hunter in advance that he only had

to do the 1 mile, but he happily charged ahead and was the first one

to finish.

Hunter was one of the two Honorees and actually DID speak into the

microphone with a little story about when he first got JRA. My

husband said a few words and I read a poem I had written (included

below).

I was so excited to have raised a lot of money -- over $2700. I

have never done anything like this other than sell girl scout

cookies in the neighborhood. When I got home from the walk, in the

mail was yet another check and on-line from the web page was more

money donated this morning totalling another $200. I am very

fortunate to have friends with the compassion and financial ability

to give so much.

Hopefully the AF will figure out how to market their event around

here and be more successful every year.

Here is the poem I wrote, not perfect, but I think gets the point

across:

If only I didn't have to take lots of pills every day.

If only I didn't have to get weekly injections.

If only I could feel good every hour of every day.

If only I didn't always have to go to all kinds of doctors all the

time.

If only I didn't have to get blood taken every month.

If only my eyes weren't inflamed.

If only I didn't have to use special eye drops all the time.

If only I didn't have to take prednisone and get a huge face.

If only I didn't have to miss recess sometimes because I could

hardly stand.

If only I didn't have to crawl to get around sometimes.

If only I didn't always have to have heating pads nearby.

If only I didn't have to have a baby monitor by my side at night so

my parents could hear me call out.

....

Then I wouldn't get to see the tears of joy in my parents eyes when

I am playing soccer, or just running.

Then I wouldn't get to have my loving sisters dote over me.

Then I wouldn't get to see the compassion of my 2 year old sister as

she rubs my head when I'm down and says " it's OK Hunter " , or " it no

hurt Hunter " when I'm getting my shots.

Then I wouldn't get to see the pleasure in my sister andra's

eyes as she's running around the house to gather my heating pads or

water or whatever it is I need when I'm hurting.

Then I wouldn't get to know how much my friends cherish the times I

can play.

Then I wouldn't be able to really appreciate the good days I have

without heating pads or fevers.

Then I wouldn't comprehend how special my play dates are with my

friends or cousins.

Then I may not be as close to my two big dogs as I am.

Then I may not be as good a swimmer as I am.

Then I may not have known about the Arthritis Walk.

Then I may not have been able to raise a bunch of money to help

others with arthritis.

Then I wouldn't have had the opportunity to meet my wonderful

rheumatologist, Dr. Knibbe.

Then I wouldn't have met some wonderful friends through the Treasure

Valley Juvenile Arthritis Family Network

If only I didn't have juvenile rheumatoid arthritis, then I wouldn't

know how to begin to appreciate life.

Best to all of you,

Stacia and Hunter,8,systemic,iritis

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  • 2 weeks later...
Guest guest

Hi Stacia:

Still trying to get caught up here:)

Congratulations on the arthritis walk and that awesome amount of money your

raised! Congrats to Hunter for walking the full three miles and speaking. Did

you videotape him?

You wrote a touching and beautiful poem.

Take care.

Patty

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