Sunday, January 30, 2011

Our little secret

If you're a FaceBook friend you've seen me talk about a secret. Well, it's time to share that secret :)

Last year at one of J's appointments I was given info about The Jeffrey Gottfurcht Children’s Arthritis Foundation. JGCAF grants "dreams" for kids with juvenile arthritis. Dr. B insisted I applied for Jordan, so I did. Months passed and I totally forgot about it.

I got an email in early to mid December saying that Jordan was selected. Things had changed as far as her treatment went and this really couldn't have come at a better time for her.

So, instead of getting the kids up and off to school on Tuesday we will be picked up and head off to The Grove and spend the day at American Girl Place.

Jordan knows she was selected for a dream because I had to find out what she wanted to do. She wants an American Girl doll, so we went with that. She thinks she's getting *a* doll and has NO idea what she's in for :)

Matthew is so excited for her. He knows what's going on and that Tuesday is a special day. He knows we're getting picked up by a limo and this is a special day for J. I talked to him about all of this over the weekend because I wanted to see if he'd feel left out or jealous. Not the case at all. He's happy that Jordan is being treated to a FUN day because she has arthritis. He said she needs this. God, I love my boy.

Photos and a post about our day will be up some time on Wednesday. Thursday at the latest.

If you happen to see us tomorrow PLEASE!!!! don't say anything! Jordan has NO IDEA! NONE! I can't wait to see her face!

Saturday, January 29, 2011

To our friends & family

I'm not sure how to go about this so I don't offend anyone. I really don't mean to and if I do offend you, I apologize. This is something I have been trying to put into (nice) words ever since Jordan brought it to my attention a few weeks ago.

Most of our friends have known our family for a while. Some of you remember everything we've been through with Jordan. Some of you have read or have heard Rick and I talk about Jordan and her issues. She's been fighting autoimmune arthritis for just about her entire life. Remember, she's not even 9 yet. 6 years have gone by and she's not been in remission once.

4 years ago we began taking part in the Arthritis Foundation's annual Arthritis Walk. Our first year I think we had 8-10 people on our team. The following year the walk was at Magic Mountain and we had a pretty good turn out. I think we had about 20-25 people walk with us. Last year, our team dropped back down to 10 people.

When I registered our team this year, Jordan asked me if we were going to have a big team like the other kids with JRA have. I wanted to say, yes, of course! But all I could tell her was that I hope we do.

If she had cancer or diabetes or cystic fibrosis would you walk for her? Would you raise funds to help find cure or for programs for sick kids?

Jordan isn't that different from the kids who have those diseases. She does weekly injections of chemotherapy. CHEMO! And it makes her sick. She has to go to the hospital once a month to have medication given in an IV. She has lab work done every month. Her life is quite different then the life of a healthy child. She's had grown up way too fast and she knows when she has the support of her friends and family.

What I'm asking, OK begging, is that you please give up a Sunday morning in May to show Jordan that we love her and we DO support her in her fight against this disease that has taken so much from her. I do understand people have to work and life happens but it's just a few hours and it would mean so much to her. The walk will be held at Magic Mountain again this year. One lap around the park and you're done! If I can do it and Jordan was able to walk it, YOU can too!! There is entertainment and snacks and it's FUN!

Thank you,
Rick & Stacey

Jordan's PINK Angels

Tuesday, January 18, 2011

The words that broke my heart, "If you and Jordan weren't sick...."

We know being sick isn't fun. Feeling ill due to the disease itself or the meds used to treat it are something we deal with often. But what about the people around us who aren't sick? Do they suffer as well? I don't mean do they have sympathy pains or anything like that. What is the toll on the healthy family members? Do they resent us? Sometimes I think so.

As many of you know I have a son. A big son. At 6 years old Matthew is 4'3 and 75lbs. He's growing like mad again. He needs new shoes ASAP, his pants are getting tight, blah, blah, blah.... He has 1 pair of shoes that fit right now and they're on the way out.

I was thinking today about how much money we spend on medical expenses each month. Between office visits, gas to get to those appts and medications for J and I, it's a lot. If we didn't have to put out so much money each month we'd be OK. We wouldn't have to worry about how we're going to buy food or pay our bills. I could go buy the boy a pair of shoes without worrying if we're going to be overdrawn. I often go without meds so I can buy the kids something they need.

But this is our life. It's really hard when you have to tell your kids they can't do XYZ because we don't have the money. It broke my heart today when Matty got sad and upset because we can't sign him up for baseball this Spring. He looked at me and said "If you and Jordan weren't sick I could play." And the thing is, he's right.