The heaviest boots I've ever had

I'm feeling very heavy tonight and it doesn't feel like there is a lot to say.

We had a long talk with two physicians who know us and know Cora very well. They are about the kindest, most intelligent, most compassionate doctors you could ever meet. These doctors talked to us humbly and genuinely about Cora's situation -- not just the pulmonary hypertension, but the confluence of conditions that have piled up upon one another leading her on a terrible trajectory. And it is their very sad opinion, and ours too, that Cora has had enough procedures and medications and interventions, and that the time has come to just let her be as happy and comfortable as she can be, for however long she can go on.


No one of us, no doctor, no person, and certainly not me, can say how long Cora will be with us. They've never cared for a child quite like her and therefore it's very difficult for them to predict her course. But they do know that her heart is very sick and her sweet little body is tired.

In a very early blog post I wrote that, as a parent, you just want to know that there are more roads to try, no matter how long or uncertain those roads may be. I think the painful reality is that there really are no more roads that are worthwhile to try, and that the most loving, most generous thing we can do for Cora is to accept that.

Although nothing is fundamentally different than it was yesterday, we feel that our world has changed.

We will work on trying to come home, even if only for a short time. I will be building a little bucket list for Cora and I hope we can accomplish some of those things.

Precious Cora, you incredibly fine baby girl, we will let you show us the road from here.