Over the years, the passion waned. The fire turned to embers and eventually burned out all together. A Cause really, truly has to touch me in some way on a personal level to get me involved. Not saying Causes aren't worthy. Just saying I've grown cynical about giving Time and Money to everyone that asks me for it.
Two of the four members of our little family have been diagnosed with arthritis...Kyleigh has pauciarticular Juvenile Rheumatoid Arthritis and her daddy, diagnosed with generic non-rheumatoid years ago, was finally correctly diagnosed with Psoriatic Arthritis two years ago.
Yeah. I'd say it's now Personal.
I know that I will end up being much more involved in the local chapter for the Arthritis Foundation. Non-profit public relations and asking others for sponsorship (money) is, after all, what I do. Right now, however, my goal is to support my own little family. Once we get a decent handle on the particular hand we've been dealt, then we can move on and help others do the same.
In the past several months I've read up a little on the disease. It is the number one cause of disability in the US. Numero Uno. And right around 300,000 children are diagnosed with JRA.
Growing up I knew ONE girl my age who had arthritis. Besides running funny, she had gnarly weird fingers. That was the extent of my knowledge of the childhood disease prior to my own daughter's diagnose. In all honesty, prior to Sean's diagnosis, I thought there were only two forms--Rheumatoid and Non-Rheumatoid. Sort of like having both kinds of music--Country AND Western.
Off the high-dive...
There's a fund raiser coming up in December. The Jingle Bell 5k run/walk. Raising money for research and awareness of the disease itself. After a few texts to family...okay, one to my sister asking if she was busy on that date...I signed up as team captain of "Kyleigh's Kronies". My job is to recruit members and raise money. Having never done this before I was stuck coming up with a realistic monetary goal. The race is December 4th. So far I'm a quarter of the way in both my recruitment and donation goals. I'm pretty happy with that.
Here's the bit where someone pipes in and advises me to gain some perspective. Yes, my husband and my daughter are suffering from arthritis. But that's not so bad, really. Believe me when I say--I know. I think I have a very healthy perspective. Yes, my husband has a potentially debilitating disease. But he's home. And he's alive. And he has been given the ability to lead a normal life. If, however, left unmedicated by Knock-Him-On-His-Ass -Weekly-Totally-Compromising-His-Immune-System-For-The-Rest-Of-His-Life meds, the man would be unable to walk. Our daughter, though diagnosed with an incurable disease, is able to also lead a normal life with no limitations. She's just on medication for the rest of her life as well. And thirty years from now will someone recall the odd girl in school that ran funny with weird gnarly fingers?
Then comes the bit where I face myself. How can I, as the Mommy, look my daughter in the eyes and inform her that she has no physical limitations and there is not one thing she cannot do if she should put her mind to it, as I sit on my butt? On the couch. No longer pushing my own limitations. Answer? I can't.
So here's the twist...
Long time ago--in another life, it seems--I was a runner. Mainly because I was bored. But I was still a runner. So, setting aside recruitment and donation goals, I set my own personal goal. Instead of walking the 5k in December, I will be running it. And so will my sister--whom, as far as I know, has never been a runner. I even found a training program to help us out...Couch to 5k. Using their training guide we should be running 3 miles in two months time. Due to my lack of unfettered time, I'll probably wait to really start until the kiddos start back to school. But I am going do what I can until then. I happen to have a very supportive husband when it comes to stuff like this. Though I can't help but think it's a little selfish on his part--getting back into running will work wonders on my backside.
The morning after I set up everything on the foundation's website and registered our team, I was faced with a dreary, rotten day. Everyone was getting sick. I was exhausted and working my way into a full fledged pity party. Mid-morning I received a notice from the foundation's website informing me someone had made a donation in Kyleigh's name. Then another letting me know someone had joined our team. And the emails kept coming in. Friends and family responding to the event page I set up on facebook. Acceptances, donations and a humongous outpouring of support. Not just for my daughter but for me. Little ole me. And I was in awe. Humble awe. Ruined a perfectly good grump. I'm neither used to nor comfortable asking for help. It never ceases to amaze me to see how blessed I am to have the companions I do who, without hesitation, step up and walk beside me and help when I do ask. Thank you! Because I can't do this--any of this--alone. No way. No how.
If you should so happen to be interested in what we have set up, send me an email (found on my profile page) and I'll spill the details. I'm also going to have a link up for the Couch25k training and I just may set up another page for a training journal... accountability is a good thing.