Saturday, May 17, 2014

We're back!

So! It's been a while! I took a long blog break for several reasons. It's been about 9 months since the last post, and that wasn't even my own.

So here is a quick run down: J is doing well. If you follow us on Facebook or Twitter, you've seen the updates. She's had her moments but overall she's doing pretty good. We've had to increase meds a few times over the last year because she's finally growing and gaining weight at a steady rate. This is HUGE! Poor J was always so tiny. She's actually catching up to Matthew and my guess is she'll be taller than I am in a year or 2. Again, this is huge considering we didn't even think she'd make it to 5 feet.

 On Thursday, Jordan and I went to see Lindsey Stirling

When I started this blog, J was 6 and Matthew was 4, or 5. Jordan turned 12 on April 1 and Matthew will be 10 in September. Over the past few months I thought about deleting this entire thing. Over the last few years I've found photos of my child being used by someone else as their own, and then last year I found a photo on a random site. There has been drama within the JA community over, and over again. I have lost some very dear friends, and just about all of my support. I don't participate in any JA forums/support groups anymore because I'm afraid I'm constantly being judged because I don't support the big arthritis charity. I know what was done to try to prevent my family from going to the conference last year because I don't support their advocates. Truth is, I don't care for this ONE particular person who is an advocate. I've never hidden this from anyone. But this person is a board member for an organization I DO support. And twice this person has been at events where my family has been, came up to the people we were talking to, ignoring Jordan and I, who she knows are also JA advocates.

There are people out there who are who don't care for me, and that's fine, but there are people out there who are scared because their child was just diagnosed with juvenile arthritis and are beginning scary medications. There may be hundreds of other JA blogs out there, but I'm keeping ours up. I've helped too many families connect with other families in their area, or answered a question that eased a mother's mind. The bottom line is, our experiences help others.

I can't do much about the photos. I can not post photos, or watermark them. But people can edit photos, and to be honest, the site I found J's photo on, they really don't care of a photo is marked or not. Obviously, I decided to post photos. Like I tell the kids, once a photo is out on the internet, it's on the internet forever. Anyone can do whatever they want with it.

Hope everyone is doing well! I promise, I will update more often.



TraceNScot said...

Nice to see your back. I am sure it feels good to speak your mind. As for the JA organization, unfortunately some people forget their cause and it becomes political, less charitable and unwelcoming. I hope more people read your blogs or find you on Facebook. You know first hand how to advise people without all the clout that comes with being on a some board. <3

Megan said...

Thanks for coming back :) Your blog was one of the first I read when my Mia was diagnosed (systemic). You've helped us a lot and I hope to continue to be able to get updates about Jordan. She's an amazing young woman and you're an amazing mom!

Danielle Tipton said...

Ok, I have definitely been out of the loop. Probably in part because I haven't been on Blogger, because I haven't been keeping up with my own blog. :p

I still adore you. Heck with the haters. "Hater's gonna hate", right? I suck at supporting much of anything these days. It makes me feel kind of bad, but it is what it is. You are only human; you can only do so much. Help where you can and if others don't like it, forget them. They aren't good enough for you.