Friday, July 27, 2012
While I've never been able to completely turn off and relax, in the warmth of the summer breeze I've been able to steal a few carefree moments. Splashing with the kids in the pool, hanging out roasting marshmallows by the fire, cheering at soccer games, beach reads, and just chatting with friends on the patio have brought me a sense of calm in our storm.
The further this road winds, the more challenging its detours become. It's tough to explain, and ever harder for those on the outside to truly comprehend. I'd never wish this situation on anyone, no one deserves the frustration and heartbreak. Yet I ask you to consider for a moment, where do you begin to share when the saga seems as complex and bizarre as a soap opera plot line? How do you make long term decisions when your impending fates hang upon the analysis of a few molecules? What if your fork in the road moved you so far away from everything you toiled to build? How would you react when faced with unsolicited criticism for trying to take the best direction for an unknown tomorrow? How do you wrap your head around the fact that answers are still uncertain and pending, let alone rationalize the reasons to others who ask and just can't comprehend themselves?
These are just a handful of the tornadic thoughts whipping around our heads every day. So in asking how we are, we are good, just know if we seem distracted, there is a great deal on our minds.
Clearly our lives have changed, and despite the frustration uncertainty brings, there is something soothing about surrendering yourself in the acceptance of what cannot be changed. At times I wonder where I would be if all had gone according to my plan, then I stop and can't help but trust that this is the plan.
As we were told our results were still not in, we were also reminded just how specialized, not to mention complicated, Cole's case has become. The multitude of twists in our journey still does not cease to astound me when I look at where we've been. While we await these results, immunology is looking at programs in both Toronto and Boston regarding the IL-10 receptor deficiency and hoping Cole may be a candidate for one of the studies. Even though there is an option of sending a specimen to an expert in Germany, there is doubt that our insurance company will approve the order.
Once again, we wait.
In the meantime, during the rain, we had one heck of a Christmas in July yesterday, filled with cutout cookies, cocoa, The Polar Express, crafts, and carols. Giggles and smiles all around, especially when our truck obsessed little boy kept insisting the train on screen was a truck. Guess we need a in-train-vention from our friend Jackson!
Looking forward to another day of calm today, playing school right now and hoping the sun peeks out so we can play outside, maybe even take the kids on a new adventure!
Posted by Liz at 10:28 AM