Such a fine baby girl

One of the things I haven't told many people is that we learned early on in this journey that Cora has an extremely rare genetic disease. It doesn't have a name; it's just an abnormality doctors identified when they took a close look at her DNA.

It's so rare, in fact, that no one else exists in all the medical literature with this exact condition. When we were informed, doctors were able to tell us virtually nothing about what it would mean for Cora. They could point to somewhat similar conditions, but the possible outcomes they referenced ranged from no impact, to ever-so-slight developmental delays, to very serious and potentially life-threatening problems. (That's a helpful array.)

Upon hearing this news, I was personally devastated. It was at a time when I believed the only issue we faced was a coarctation and VSD repair. My heart was already broken over that. Now doctors were telling me that Cora could possibly face other things.

But as she recovered from that surgery, she began to show us that she was not a worst case scenario; she was just a baby. And she started to do normal baby things, like drink from a bottle, smile, gain weight, and kick around. A wonderful and compassionate doctor at UCSF told us, "you can't go down all the theoretical scenarios of what might happen. All you can do is let Cora show you who she's going to be." True and beautiful words that I've carried as a motto.

At the time we were originally discharged in December, Cora was just a little baby, recovering from major surgery. I didn't want to and haven't wanted to tell anyone else about this other disease, probably because I've been afraid people would look at her differently. When I looked at Cora, she showed me she was a beautiful, wise, petite but very spiritually strong little girl. I have feared that others would see someone imperfect. Everyone loves a little child who is encountering challenges, but who will recover from them, and then one day run marathons or play on a soccer team. My fear is, what if her story is not as perfect?

Which brings us to today. We've had a frustrating few days at Stanford. There have been questions introduced about whether there might be other factors contributing to Cora being so sick, aside from just cardiac issues. A thought that sinks my heart. And here we are again, another time when I stand in one place that feels somewhat secure, only to see a road ahead that's confusing, and likely very, very long.

I deeply wish things were different.

But as usual, no one is asking me. So all I can do is take each moment as it comes. I have painfully little control over anything, except my ability to love Cora, and continue to let her show me who she is becoming.

Beautiful little lionheart, you are an amazingly fine baby girl. I just don't think you drew the easy straw in this lifetime.