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Totties Pretties on Etsy

Totties Pretties on Etsy
Tottie's Pretties are ribbon wrapped headbands adorned with flowers & gems or perfect boutique bows. Banding Girls Together to Find a Cure for Childhood Arthritis. Tottie's supports CARRA and the Arthritis Foundation.

Saturday, October 9, 2010

The Face of Arthritis

"Well she doesn't LOOK sick.".....Yeah, if I only had a penny for every time I've heard that. Or how about this one..." SHE has arthritis? Are you sure??" Nah, I'm actually not sure. We just like injecting her with poison. I have also been accused of making it up. Because you can make this stuff up right? I can CREATE this crap in my child's body. Sorry folks. Mama Bear is having BAD day. It annoys me, angers me, FRUSTRATES the HECK outta me and today it all seems to be piling up on me for whatever reason. Just because you can't see the arthritis, OR the Uveitis, doesn't mean it's not there!! What in the world is it that people are expecting to see anyway? Thankfully she doesn't have any outward signs. No walker, cane, heaven forbid a wheelchair. Currently she has no visible swelling. Does that mean she isn't suffering?? Does that mean she doesn't feel pain that YOU can't SEE?? Does that mean that she doesn't have to adjust to what the world is doing to make her more comfortable? NO. NO. And NO. The really sad thing? Kids like my Bean have been in pain so long that they don't even know any different. I recently heard in a video that I watched online, a JRA Mom say, that when she was in labor, it was the worst pain she had ever felt. But at least she knew that it would end. The pain would be over. These JRA kids have no end in sight. They can't look forward to a day that their pain will end. And typically it only gets worse as they get older.
We went to the park today so that the kids could ride their scooters. They have been looking forward to this for days now. Well, guess what? It was a disaster. I thought if anything it may hurt Bean's knees or her hips. It hurt her HANDS. *sigh* I kept trying to get her to maybe hold on with a looser grip, take breaks, it just kept hurting her worse. And don't think that this just affects her. Bub was having a great time zipping around on his scooter. But then we had to leave because Bean was in pain. We tried just walking while Bub rode his scooter but something happened that hadn't happened in a LONG time. Her legs gave out and she just collapsed. I tried my hardest to hide my horror and shock. Not sure how well I did, but I did say that it was time to go. I gave her a nice warm tub, and then gently lotioned her, and now she seems fine. But Mama is far from fine today. I'm just angry. Angry at the disease, angry at ignorance, and yes angry at families that have perfectly healthy children (okay maybe not angry with but certainly jealous of). That may not sound fair. That may not sound right. But today I just want to be honest. *sigh* Church tomorrow. I'm in need of some good church.


Anonymous said...

This is heartbreaking. I will whisper a prayer every time I think of your sweet brown eyed girl. Saw this link on Tabitha Fletcher's post on FB.

Beth Clark
Savannah's Mommy

Amy Cunningham said...

Beth thank you SO much! Thank you for taking the time to click the link and pay as visit to my blog. And thank you most of all for your prayers.