A Window To Our World

If you were wondering, there is a real, live family behind the Living With Juvenile Arthritis book and blog.

Its not a corportation, or a bunch of folks that get directed to research and write about JA, it is really us. I’m doing my best to keep an informative, quality post popping up once a week based on our experience (which has been over a decade) with not one, but TWO kids with the disease. But sometimes, life gets in the way!

This week has been big for us, as we recently came off of the (amazing) experience of the Juvenile Arthritis Conference, and then jumped into a surgery for one of my boys the very next day. Recovery has been fine, but slower than expected with a few unanticipated twists and turns along the way. This means we have been in California for nearly a month as opposed to the estimated two weeks we thought we would stay.

Juvenile Arthritis can do that to you. You have one clear cut plan of action, and it morphs into something else once JA factors in. We have extended visits due to JA (when the kids took a turn for the worse and were unable to travel) or cut them short for the same reason. We have made plans, changed them, cancelled and rescheduled. Sometimes we have missed out, but often we have found the alternative to be quite pleasant as well. The key is to seize the moment and make the best of it however you can.

Take our situation for example. We thought we would be good to go a week after the surgery, however the doc wanted us to stick around for another minor procedure that couldn’t be performed for at least seven more days. Although he wasn’t quite up to snuff, the kid was all for getting out of the hotel room that had been his domain for 9 straight days! We packed up the car, and made a short, couple hour drive to Central California, to see friends that we would have been unable to “fit in” on the original schedule. It was very low key (this should read- we did nothing but lie around on the couches, lounge at the pool and nosh on yummy food) and it was a perfect post surgery escape, for all of us. Great times, great friends, great memories…. all because JA threw a wrench in our original plans.


Bonus: visiting friends at home means “dog therapy,” and dog therapy makes anyone feel better.

One of the points that I focus on in Living With Juvenile Arthritis: A Parent’s Guide is that in order for you and your child to be happy with your “new normal” you have to get comfortable in the situation, let the bad roll off your back and find the possible good in every situation. You must actively seek out the benefits of your situation (YES they are there) and only then will you begin to uncover your silver lining and the things that help you regain your life. As a former control freak, this was a difficult lesson for me. As I have learned to slow down and smell the roses, to appreciate what is right in front of me, although I had planned to be in front of something else, I have gained a peace that I never previously knew.

This post was meant to be just a glimpse into the window of our world. Today we go back to clinic, and find out if we stay in California another week, or if we get to go home sooner. I would like to get on our way, but I’m not stressing about it. Who knows what “adventures” will come our way, either way? The things that are not in my control, are just that. What will be will be, and we will make the best of either situation. Do you know what that does for this former control freak? It gives me control over my own happiness. You can have that too.

In a few days (or a week, depending on our visit today) our routine will get back more to our normal, and the blog will go back to general informative posts. But for now, things were a little different than we thought they would be, and I wanted to share that with you too. We are all in this together.

(And if you’d like to help me finance the extra days on this trip, feel free to order my book, or shop at my Amazon store, where I have compiled some of our favorite books and products related to JA)

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  1. Howdy! I know this is kinda off topic however , I’d figured I’d ask.
    Would you be interested in exchanging links or maybe guest authoring a blog post
    or vice-versa? My blog discusses a lot of the same subjects as
    yours and I feel we could greatly benefit from
    each other. If you might be interested feel free to shoot me an e-mail.
    I look forward to hearing from you! Superb blog by the way!

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