An imperfect blossom among the tulips

An imperfect blossom among the tulips

Why the bright side of everything?

Ironically, the story behind this blog is intimately tied to one of the few times in my life when I didn't see the bright side. But let me back up. 

I was born with a rare genetic disease called cystinosis. I won't bog this area down with details, but suffice to say, a lot of people think it's pretty bad. I've never been one of those people. Back in the 1980s when I was diagnosed, there was no such thing as social media, and I didn't hear or see a lot of complaining about the disease. There was no "cure rhetoric" because no one discussed the possibility of one, so on the one hand I never assumed I would ever live without it, but on the other hand I never assumed it was dreadful. While assuming that an incurable, lifelong disease was my reality might sound depressing, in reality I was raised to believe that my life had no limits and that God had me safely in the palm of His hand. I didn't live believing that I needed anything better than what I had.

In 2012 I published Roller Skating with Rickets, a book about growing up with cystinosis. I started a website where I posted updates about my life with the disease, but I increasingly felt like I was trying to force a square peg (me) into a round hole: I felt like people expected that most things in my life were impacted by cystinosis, and therefore I tried to fit my posts to that expectation (that I was constantly thinking about cystinosis).

In the end, I decided it was time to "do me" and start a blog where I would feel free to post about all aspects of my life without connecting them back to cystinosis. What prompted this was discovering I was pregnant in January 2016 and seeing our baby's heartbeat on the sonogram. I thought that "The Bright Side of Everything" would be the perfect place to share updates about our growing family and then eventually share my perspective with my son or daughter.

I planned to go live with this blog on the day of my second sonogram, scheduled for February 12th.

But on that day, there was no bright side. The baby's heartbeat, which I had seen going so vibrantly just two weeks before, was gone.

On the car ride home, I told Wayne that some things in life just don't have a bright side and that I was stunned to be admitting that, because I'm someone who sees the bright side of everything.

But I decided to go ahead and publish the blog. And I do see bright sides in my pregnancy experience—just not in the loss. There will never be a bright side in that lost life. But for that brief period of time, I got to experience the joys of motherhood (though I never got to hold my baby's hand). I learned how to look at the world with new eyes, eyes that would be introducing it to someone else. I breathed deeply in gratitude.

And at its heart, that is what this blog is about: breathing deeply in gratitude.