If you’ve read The Hope of Azure Springs, and if you made it to my author’s note, then you know that during the writing of this novel my son Titus was diagnosed with Adrenoleukodystrophy. The months surrounding his diagnoses were incredibly challenging months for our family. We were very afraid we’d lose our little boy. Without going into all those details, I’ll sum it up to say he’s okay right now but we know this dreaded disease could manifest itself in big ways at any time.
To monitor his disease he has an MRI of his brain done every six months in hopes that we will catch disease progression early. Living in six months increments has taken some adjustment. It’s difficult committing to things knowing we might have to cancel. If/when his disease progresses we will quickly move to a bone marrow transplant in hopes of saving his life. We’ve adjusted, though, and for the most part life feels normal again.
The end of November was Titus’s most recent MRI. I’ll spare you the suspense and let you know that the results were good and we get six more months. Here’s the cool thing — every six months our lives stop. We get ready for this big appointment that we know could change our lives in a drastic way. For the days leading up to it and the day following it we are often tense and nervous but we also have our busy worldly blinders removed. During those days we don’t care quite so much about politics, dirty dishes, or our giant to-do lists. We care about family, faith, moments we can’t have back. I’m someone that believes that even horrible situations can be sprinkled with beauty. Having a clear perspective twice a year is rather special!
Shortly after Titus’s MRI we were still in the euphoric after days when we started talking Christmas trees. They’d been watching this thin flimsy tree growing right next to a giant tree for years. It was never going to grow into a tall tree but they were sure it’d be a beautiful Christmas tree. It’s odd shaped, its branches are weak, and it’s perfect. We brought it in and we strung popcorn because it looked so sparse. We could only hang our lightest ornaments! We put candy canes on it and had to put a different topper than we normally use since it’s so skinny.
Every one of the kids has commented on how much they love it. I love it too. I hope they always remember it. I hope they remember what it looks likes but mostly what it felt like to be living in the moment, free of worries about how our tree would compare to anyone else’s. I hope they remember these little pauses we get from real life. I hope they remember how in those moments we are able to see things just a little bit clearer.
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