3 Years Ago.

[Guest guest]

Helen,

Thanks. I also have a date stuck in my head. Roll with the punches. When

you mentioned about the hand you were dealt. Brought back something 's

Dr said to .

She said life is like a deck of cards some people have good cards

dealt to them. Some don't and right now your deck of cards you have been

dealt isn't good but you can make those cards work for you. wondered a

while on what she said. I said well honey right now we have a bad hand. BUT

playing our cards right we can get a good hand.

I explained it better to her. It's like playing go fishing. lolol. Sometimes

you have to wait and wait til someone has the card your looking for or you

draw the card. Then you continue like this til the deck is done. Some have

more some have less. But you go after more. lolol. She said ok life is like

that. Some are rough days some are good days. I said yes ma am. lololol

Ummm With every deck of cards I buy. I open it and then take the Jokers out

and trash them lolol Don't need a joker in our deck of cards lololol.

Robbin

[Guest guest]

Helen,

Ditto....It will be 5 yrs for us on the 21st.

Life sure is differant and hopes and dreams have changed but we now have new

hopes and new dreams that are every bit as wonderful.

Love and hugs

Becki and 7 systemic

[Guest guest]

Hi Helen,

Your message was so beautiful, highlighting the strength and endurance of all

children faced with needing to cope with a chronic illness. It was around this

time of year that Josh was finally diagnosed, as well. It was towards the end of

his kindergarten year when he first got sick and now, he's just finished his

Junior year in high school. We, too, have gotten stronger through having to deal

with these challenges that we had never expected but eventually had to learn to

accept. It's changed our lives and there are some bittersweet memories but these

kids are absolutely amazing and they'll never let the arthritis keep them down

for long.

They are ALL heroes ... and we love them so much!

Thanks for sharing your thought,

Georgina

3 Years Ago.

It was 3 years ago today that Nick and I walked into a

rheumatologists office for the 1st time and walked out with a dx of

probable systemic onset JRA. Although Nick had been sick for the

previous 3 months and we suspected this, it was still devestating

news.

Its hard to imagine sometimes what life was like pre- dx. Nick was

just 1/2 way though his kindergarten year with his whole school life

ahead of him. Now life is filled with medications, shots, infusions,

blood tests, hospital and doctor visits.

But though it all Nick has not changed. He deals with each day as it

comes. He is still the fisty, stubborn, fun loving kid he always

was. He has grown stronger, he rolls with the punches and faces the

challenges with the fortitude of most adults.

I have grown stronger too. I have learnt to advocate for my child. I

have learnt not to take anything for granted. Nick has taught me

many life lessons. Although we are walking down a different path

than the one we dreamed of, this one has its silver linings too. We

have crossed paths with people that we otherwise would never have

met, people I like to call my friends, people who mean a lot to us.

I know whatever hand we are dealt, we will deal with it together and

move forward. Theres no stopping this kid and he will succeed in

anything he puts his mind to.

, my hero, my son.

hugs Helen and (8,systemic)

[Guest guest]

Hello Helen, & Becki, Georgina & everyone.

We are approaching or 5th anniversary as well. It was June 2001 when Robbie's

symptoms began, and I was terrified watching my son get worse and worse.

Amazing how far we have come.

As crazy as the last year has been, I am so pleased that we actually got through

a school year without a hosptilization!!!! I'd actually forgotten it was

possible. Robbie did great in school - he made the honor role every grading

period except for the 1st - where one C in writing in Math (1/4 of his actual

Math grade) - kept him from it. In the last couple of weeks we have been quite

busy, finishing up the school year - in the last few weeks of Spring Season

baseball and busy with Cub Scouts. In Scouts he bridged over to become a

Webelo. He had a great season in baseball - hit his first home run ever - and

then followed it up with another one two games later. His team did outstanding

ending the season with 15 wins and 1 loss - and that game was lost by only one

point. made a lot of great plays and continued to surprise the other

teams as the littlest player stood out for more reason than one. He tried out

for, and made the tournament team again this year - so baseball will continue

into the summer & this year Mom is going to remember that the sunblock is for

her too! My new job is going great - but it keeps me quite busy. Though it's

great to not be driving to DC everyday - I am at work and parked in less than 30

minutes & it's from a stress free drive. When the folks here in Baltimore

complain about the traffic getting into work (it's not traffic - it's

stoplights!) - I have to laugh to myself.

Rob is doing well - though he complains of leg pain and back pain after games,

and sometimes in the mornings he still has back pain and some stiffness - but he

has many mornings without complaint - though yesterday morning he told me he

felt great - and I turned as he walked down the hallway and saw him " toe

-walking " - something I haven't seen in a long time. The past few mornings when

he has come for his morning hug he's felt very warm - but when I check there's

been no fever (I think he was a little disapointed this morning, because he knew

we'd be staying home if he had a fever) - so I worry that something is in the

air - but willing it away.

Well, my break is over - so I'd better get busy. Hugs to all of you!

Val

Rob's Mom (8,systemic)

Re: 3 Years Ago.

Helen,

Ditto....It will be 5 yrs for us on the 21st.

Life sure is differant and hopes and dreams have changed but we now have new

hopes and new dreams that are every bit as wonderful.

Love and hugs

Becki and 7 systemic