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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.

Tuesday, September 20, 2011

Is it too much to ask?

I just want her well. I want her to know a day, a full 24 hours of feeling WELL. I know that she can't remember what it's like, because lately, I can't even remember it. I can't remember what she was like before she got sick. Was she always this angry? Was she always this emotional? What were her habits? Did she always act this way? I feel like I am mourning the loss of my WELL child. Now, do not get me wrong. I do realize that she is much better off than some children, I get that. But some days, that just isn't enough to soothe the ache that is in my heart. I WANT HER WELL. Is it too much to ask? I used to pray for, hope for remission for her. Remission you say? Like cancer?? YES, remission, like cancer! Because, like cancer, Juvenile Idiopathic Arthritis has NO CURE. So, as of right now, all that we can hope for is remission. As of right now, she can never be 100% rid of, cured of this disease. This disease that encompasses and endangers her entire body. At the JA Conference this Summer I got a new perspective on remission. I was able to meet many teenagers and young adults that have never known remission, yet are leading full, happy lives. I then realized that if Jenna never went into remission, as long as she was happy, I would be okay. Well, today I'm not feeling it. Today, I WANT HER WELL. Is it too much to ask??
Today I feel like screaming as loud and long as I can until I can make people understand what we go through. Today I feel anger and resentment at the hand we've been dealt. Tomorrow is another day...


Michelle Jones said...

**sigh** this post just makes me so sad and so blessed all at the same time. Sad for you and what you have to go through and blessed that I have healthy children and that I have you as a friend. We take for granted sometimes what we do have. I just wish that everyone would learn more about JRA and realize how significant it is. So many people are naive to the whole thing and think that RA is just a little inflammation and pain that can be treated with a pill and its all good. Obviously that is not the case. You are such an amazing mother and support system for Jenna and everyone else whose lives have been touched by JRA. Your involvement, constant support and advocating for your child shows just how strong you are, even on those days where you want to scream, you are still strong. Everyone needs an outlet and finding a way to let it all out, shows strength, not weakness. You are an amazing mother, wife and friend and I am so blessed to know you :) <3 HUGS

BusyMommyinTN said...

I have had days such as these as well. It is okay to mourn the loss of your well child or get angry when things get worse. I hate arthritis too! It has wrecked havoc on myself as well as my beautiful child. I hope and pray that your daughter gets to the point she is hAPPY even if remission never comes.... I will pray for her! and you!