Sometimes I  do this thought exercise where I imagine how much worse things could have gone for Owen and us. It’s like a really messed up Dayenu, except instead of “it would have been enough,” it would read “it would have been worse.” If Owen had surgery but died by himself on the operating table, it would have been worse. If Owen had not breathed at all or never opened his eyes, it would have been worse. If Owen’s birth had been filled with chaos, it would have been worse. If I hadn’t gotten out of my bed in time to see Owen pink and full of life, it would have been worse. If I only ever saw my Owen knowing that he was definitely going to die, it would have been worse.

Zach’s always telling me not to quantify our suffering as if there are easier or harder ways to lose your child, but it helps in a way. It reminds me that I do have things to be thankful for. I know other mothers whose babies died, and I know that I am lucky to have seen Owen’s big brown eyes. I know so many things that could have happened and didn’t, that I know to be grateful for what good fortune we did have. The math doesn’t always work out though. Sometimes I think: What if Owen had lived for a few years and then died? What if he reached an age where he understood what was happening to him, but we couldn’t save him anymore? What if we had had to tell him he was going to die? I don’t really know how to feel about that. I obviously wanted to know my son, but I am very glad that I did not have to explain concepts like death to him…especially since it’s too overwhelming for me to fully grasp. I know of parents who have had to do this. Perhaps they think if their child had died at birth, it would have been worse. Then again, maybe we, all of us bereaved empty-armed parents, are just lucky in our own ways. There’s probably always a trade-off.

I would rather have Owen here than not, but still, I am so, so glad that I’m not sitting by a CICU bed right now. Often when I was pregnant, I felt that if we could just help Owen through the first weeks to months, then it would all be okay. I’m starting to realize that that is not the case. I know we would have spent the rest of his childhood wondering if he could defy the odds anymore. Every cough would have been a crisis. We would have been completely broke all the time, and I would have not returned to work for many years. I would have given it all–money, my career, the sureness of knowing what was going to happen to my son–to love and care for Owen, but I am still happy for what I’ve got. I’m not really sure what to make of that. If the impossible happened, and I was in the hospital with my baby right now, I’m sure I would choose it. But I’m so relieved I didn’t have to.

I do agree with Zach that there’s no point in putting a measure on this kind of pain. The only outcome is a scale that reminds me that, while we’ve been woefully unfortunate in this area of life, there are so many other ways in which our life could be tragic. When I remember that, I’m both grateful for how very good most of our life is and also terrified of what else I can lose. I never would have considered life to be so fragile before, but now that I know differently, I’m trying to learn to live as infinitely as I can in each passing moment.