not granted, not for granted

For this post to make much sense, you will first need to Meet Waverly and Oliver.

I have been glued to my computer since watching this, doing strange research on a disorder my children don't have. I first read about this family in Taylor magazine. I think I cried then. Then a friend posted this video on facebook and I realized this is a friend of a friend. People who attended my small university. People who are likely similar to me. Two young kids. But this crazy difference.

I watched the video again so I could go ahead and really cry about it. And I had Pat watch it with me. It's like waking from a nightmare and wanting to go back to sleep to see how it plays out, in hopes that there is a happy ending -- even though it's not your reality.

I have had several brushes with not-my-reality. I have a friend whose totally-cute daughter is just between my kids in age. She has a genetic disorder that seems mild now, but the possibility of it becoming severe looms over her. I watch our kids play together hope it just stays that way. I have a friend who gave birth to a beautiful girl while I was pregnant with Eden. Her daughter faces many physical and potentially neurological difficulties. When I was up nights nursing Eden, I was glued to the website where I could find progress postings of her time in the NICU. I am still glued to her life that runs parallel to my daughter's. During the time between my two births, two of my friends gave birth to babies who lived only a day. In quiet moments, I remember the babies who could have been my kids' friends.

It's a nagging question for me: How do I have it so easy? Not that my life doesn't have difficulties, as each of these friends would so graciously point out. We all have our struggles to go through. And part of mine, I guess, is struggling with "Why them?" and "Why not me?" I've encountered it in different ways since high school, with varying degrees of questioning God involved each time. At this point, there's not a bone in me that expects an answer this side of eternity...as though I'll be the one human being to finally know. I'm holding out hope that when I get to the other side, the question will seem absurd and lost in a sea of joy where we all swim.

Until then, I'll appreciate knowing these dear ones in whatever capacity I can. I will let their determination to live their best lives possible be an ongoing reminder to live my best life and to make the best life for my kids. I'll remember not to take "normal" life for granted, because it isn't always. And I'll hug my kids until past their bedtime.

In the meantime, click here to vote to help fund finding a treatment or cure for these kids. You can do this once a day during January. I plan to do it...both for them and as a reminder to myself.