Crowd Surfing

Cora is overall doing okay today, but she is definitely struggling. This one of the hard things to communicate -- the complicated and tough daily reality for her, living with advanced heart failure combined with the complexity of her heart block. It's like she walks on a tightrope across the Grand Canyon all the time. She is so fragile, her heart is so bad, and yet she likely has to sustain this for months and months until a donor will become available.

The doctors talked a lot today again about their continued concern for her. The team is constantly weighing the alternatives of giving her a pacemaker to at least help with her heart block, or of putting her on a Berlin Heart, or providing her with additional support in other ways. They worry that her heart won't be able to sustain her for a prolonged wait. But at the same time she's not robust enough to undergo some of the interventions that might help her.

Each day I just pray she can balance for one more day. I find myself holding my breath a lot.

Cora isn't phased by all these concerns, however. She just keeping living each day, amazing people, and me. Living, and snoozing, like she doesn't have a care in the world. (See photo for evidence.)

Jason came home for a few hours this afternoon and we got the opportunity to spend quality time with some of our close family and friends. We played with the kids, laughed a lot, and for a couple of hours we managed to set aside the stress that normally sits about three inches beneath everything we do.

I had a moment tonight when I was acutely aware that our family is living in a state of grace. The support, friendship, prayers and love from people we have known for years, along with people we have never met, and will likely never meet -- it's all buoying us over the badness that we otherwise wouldn't be able to handle. Kind of like crowd surfing.

Tonight we received an incredibly, wildly, bordering on offensively generous gift from a very large group of my coworkers. It truly blew us away. What a thing, to be so carried. 

I remember when I was little my Dad once said to me, "There are two kinds of people in the world: those that believe people are inherently good, and those that believe they are inherently bad." I have always been in the former category, but my current situation just affirms it. Almost everyone, if given the chance, is generous, open-hearted, and compassionate.

If you're reading this, you're likely one of the concert goers, holding us up while this show goes on. Thank you for carrying us another day.