Big Sur…..

I think if there was a moment that I truly envy Dave’s experience on this ride… well, there are many – but if I had to pick a few, this would be up there.

It’s the moment when the riders get to the Big River Inn in Big Sur.

And the moment shortly thereafter when the riders take off their shoes and rest their weary feet, ankles and calves in the cold Big Sur River.  There are Adirondack chairs literally in the water – so you can keep your buns dry while you soak your toes.

Austin – enjoying the refreshment.

But I’m beginning with the ending, because I like it so much!  The day actually started very early…. I got the text that the gear was all stowed and they were hitting the road at 7:46am.  That’s pretty late for Dave actually.  I imagine he had been up for at least three hours by then.

The morning started off foggy and chilly – but the sun came out, the clouds burned off and it turned out to be another gorgeous day!

I remarked to Dave that he doesn’t seem to have as much to tell this time – Last year, we talked at great length about the restrooms and showers, the meals, the campgrounds, whether there was any chafing to report.  But that’s all old news now!  The great news is that he’s much more relaxed this year… stopping a little more often to smell the flowers so to speak.

He really is having the time of his life!  I can tell he’s trying not to gush overmuch about it when we talk each night. He feels pangs of guilt knowing that I’m going through the normal routines with the kids while he is surrounded by redwoods, chilling.  But nobody deserves it more than this guy… who really is doing it in Caitlin’s honor… but he deserves to enjoy it for what a wonderful husband and father he is all of the time.  He’s been nothing but considerate as he has trained – trying to leave early in the morning so he has more time home with us on the weekends.  I’m proud of him for the accomplishment – but I’m thrilled that he gets this vacation and adventure too!

I mentioned earlier that many of the cyclists originally signed up because it’s a cool event, and not necessarily because they have a connection to the cause.  And then hopefully, they learn and grow to feel passionate about improving the lives of people with arthritis.  On day one, there was a female cyclist that I barely passed driving into the second pit stop.  She was far ahead of the pack. She was such a stud I could see the cuts in her leg and arm muscles from several car lengths back.  I heard through the grapevine that she was a writer.  She captured what I was trying to explain very well… and from the cyclists perspective in her online article for Bicycling.com.  Her name is Selene, and she goes by the moniker Fit Chick – which was incredibly appropriate!!

So, my mission moment today is about another JA mom named Amber.  Amber is in the navy, stations in Southern California, and her daughter Emily was diagnosed earlier this year with systemic JIA, same as Caitlin.  She also had complications of MAS.  Emily’s diagnosis was a long painful process, and she was hospitalized for weeks.  Amber took a leave of absence to be home with her daughter and it was a struggle just to get Emily under enough control to be released from the hospital.  It ended up taking consistent doses of steroids – which lead to the dreaded side effects – weight gain, moon face, moodiness, insomnia.  Finally, it looked like things were turning and Emily was finally tapering the prednisone down.  But before she could be completely off of them, her rash came back, her joints started swelling, she flared – and even worse, the MAS is back.  Amber posted today about her helplessness and frustration of losing the happy, friendly, amenable child she once had because of this disease and the medications.  She longs for the daughter that didn’t look at her suspiciously, as if she is always coming with a needle or bad news.  I’ve been there, and my heart breaks for her.  I can tell her that it will be OK…. but that is little solace when she is day to day in a fight for control for her daughter.  Hopefully, there is solace in the fact that those CCC riders do care about Emily – and they do want to make her life better.

Today’s DRG honoree was Livia.  So to end on a more positive note, Livia’s dad Matteo continues to enjoy the days of the ride – Dave rode with him quite a bit today.  And even better, this little one is doing well 🙂

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This entry was posted in Awareness / Advocacy, CCC, Overcoming obstacles, Pain, Prednisone, Uncategorized. Bookmark the permalink.

2 Responses to Big Sur…..

  1. Bob Johnson says:

    Colleen, Thanks for the beautiful prose you give us, as Dave inspires me (again) to get ready for next year. Its cool that Selene Yeager is there this year. I read her column regularly. Hope to see something about the CCC. Best regards to Dave.

  2. Selene says:

    What a great blog. Happy to have met so many passionate people riding for this important cause I now understand so much better.

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