On Being “Better”

I think I need to make something clear: I am not better.

The pain has not lessened. I miss and love my son more than ever. I am not “handling it all really well,” as I’ve been told.


I know most of you know Ryan and me personally and love us and only want us to be happy again. I know I’ve shown you those glimmers of lightness and hope that are possible. But this process is not linear. As my friend Suzy says as she draws her finger through the air, “it’s wavy and circular.” She’s right. As a diagram from my grief counselor shows, grief is a wheel. As another shows, grief is also a concave arrow that loops over and under circles of shock, anger, and hope. I’ve been proud of us for not losing sight of HOPE—it’s always there, painfully small on the horizon, but there. But that does not mean we are better.

As many of you know, part of the reason why grief is so isolating is because it is so particular. Our lost loved ones are particular. While I don’t necessarily subscribe to the standard phases of grief arriving one after the other, the emotions embedded in those phases make sense to me because anxiety, depression, yearning, and guilt make sense right now. It also makes sense that while I have moved through disbelief and am settled painfully in awareness, I am still far away from acceptance. I still circle back to disbelief. I still feel panic. I still deteriorate and protest. I still withdraw and relate to that floaty feeling of “unreality.”



I feel the need to clarify all this because I’m feeling some pressure to be better. Some of that pressure is self-imposed and some is not, but it’s descending on me here in Month 3, which Suzy says is also one of the hardest. That actually does make me feel a bit better. That validates why the majority of Week 12 has felt a lot like Week 3. Like I said, it’s not linear.

Yes, I am in the process of “healing.” Yes, I sound better sometimes. Yes, I do not prostrate myself at your feet and wail though I imagine doing so sometimes. I can still be a civilized person, but does that mean I’m “better”? What is “better” anyhow? Even in my mind, I can’t quite characterize it. Does it mean I shower and get dressed? Does it mean I laugh with a friend? What does it mean when I do those things one day and the next cancel plans I made on the day I laughed so that I don’t have to be somewhere public and sunny on the day I did not shower and get dressed? What does it mean when I am in conversation with someone articulate and realize I have just stopped speaking mid-sentence, with no intention of finding the right word or finishing my thought? What does all of this mixed together mean?



Some of you have the answers. I should volunteer. I should go back to teaching. I should do anything other than go to bed forever. I love your optimism and positivity. I was one of you a few short months ago. All I can say is I rescued Ruby and I’m writing a book about my son and coping and reproductive rights. I’m making sure my husband and I eat healthy dinners. I’m not slitting my wrists. Were I to return to teaching, I would be horrible at it. I would look at my students of English as if I had the right words. And I don’t. So, it doesn’t go without saying that I am grateful to be in a place where I don’t have to just yet. We are far from home, but can afford my staying home.

Others of you, like me, don’t have the answers. From the beginning, I’ve used words to say that words are inadequate for this. In my private documentation, I’ve used precisely 34,161 words and I’m chasing more, though none will answer the biggest questions of all: Why does this present in 2 or 3 or 4 out of every 10,000 births in equal measure the world over? Why did this happen to our son? Why was the left side of his heart “underdeveloped”? Why were his aorta and left ventricle “too small”? (In our case, there was no visible aorta at all.) Why did “the holes in his artery and septum” not “properly mature and close”? I’m quoting the American Heart Association, but I think “underdeveloped” especially isn’t the right word; it implies at least a fair amount of development. When my doctor drew our son’s heart on a piece of paper, the left side looked like a mere sliver, a Waxing Crescent Moon. It looked like it never developed at all. So, there again, even science and medicine and diagnosis can’t give it to you straight.


Because there’s no ultimate answer, my hope is that my attempt to find the words helps other parents like us one day, even just for a little while. But even that is not my ultimate hope. My ultimate hope is for healthy babies the world over. Then I will be better.

“Grief doesn’t hit and run; it stays and sometimes for a very long time.
Anyone with a heart knows that.”
Rococo by Adriana Trigiani


  1. One of the most reassuring things I heard in the aftermath of my mom's death came a few months into it. Someone said "it never gets better." Out of context, that sounds hopeless and depressing. In context, it felt freeing. Of course, things improve. Sadness becomes less frequent. It does, in many ways, get better. But it's never all better, it's never back to normal, and knowing that, rather than upsetting me, made me feel relieved that I wasn't horribly behind in some race to a fixed point labeled "better." You're doing just fine.

  2. There is no better. Only Before, and then, After. Two sides of a coin that never really meet. Your writing is so beautiful, even in its heartbreak. Sending love your way, my beautiful friend. xoxo H

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