It was the beginning of the Something Worse summer. Every new bit of information about our baby’s condition we learned seemed awful, like the worst news we could get—and then we learned worse news still. Before Liam got born so fast, the ultrasound in the midwife’s office had registered a faint irregularity of heartbeat; then we learned that he wouldn’t live long, that he would burn like a shooting star through those cool midsummer days. I had to learn things that I never wanted to know in order to take care of Liam. I also learned things I needed to know, and learned that, as awful as things got, I wasn’t immune to a pleasant surprise.
To feed him I learned to insert a tube into his nose. I measured it from his cheek to his stomach along his seized-up body and pinched the tube at the point where it touched just below his nose. I fumbled with one hand to plug my ears with the miniature stethoscope—the one the nurse at the neonatal intensive care unit gave me when we decided to take our baby home—so I could listen. I didn’t let go of the tube. I didn’t want to lose the length I’d measured off. I flipped the tube over and began inserting it into Liam’s nose and noticed that his nose looked like his father’s and that his eyes were sometimes the color of sapphires. Perhaps, if things were right, they’d be blue someday. But nothing was right, there wouldn’t be a someday—only that minute and my son’s unblinking stare.
I learned I had to hold on any way I could, even knowing the end would come soon.
After some time the last of the milk passed through the syringe into the tube. I watched the white line of the milk drain down. My arm got tired but I held on anyway, supporting my raised elbow with my other hand when I needed to. The line slipped into Liam’s nose; the tube was cleared. I waited a couple of heartbeats more to make sure the milk had passed all the way into his stomach. I removed the syringe, taped off the tube, and taped it to his cheek for the next feeding. I didn’t need to change it until the next day. I hoped I’d have to change it the next day because if I didn’t, it meant something even worse had happened; I’d have to do something even worse. Learn to let go.
I learned I had to make decisions I didn’t want to make. My father-in-law, Jerry, arrived after flying for three days from St. Petersburg, Russia, to be with us. Chris had sent a fax to his boat, “Come now, please.” Jerry was a cardiac-thoracic surgeon and head of surgery for Maine Medical Hospital, but in his transition to retirement he took a job as a doctor on a Maine Maritime Academy ship sailing to Russia from Maine.
“You can make a choice,” Jerry said as we sat in my living room, where the late-afternoon sun had begun to fill the room with warmth, and the butter-yellow walls began to glow. “People do make that decision in some extreme cases.”
I took in his words, but couldn’t comment on them directly. “I love this glowy time of day,” I said, looking down on Liam in my arms. “It’s so bright and soft. I like to think of it as a golden hour.”
Jerry, I think, sort of chortled and looked down. In my stupid arrogance, I thought he just liked my phrase and was pondering it. Maybe he did tell me “the golden hour” is also medical slang. But I don’t think he explained it to me then. It was years later I learned that in the ER medical community “the golden hour” is the period of time from the onset of the injury, during which if the right remedy is applied, then the patient is likely to be saved. The physicians had just a short time, only a few chances to get it right. I could only sit in the afternoon light holding my bright little baby and listen.
When Jerry was getting ready to leave a few days later, I was in the other room changing Liam’s diaper. I hurried and brought him out and asked Jerry if he wanted to hold Liam one last time before he left. He took Liam in his arms and cried. I’d never seen Jerry cry. When he was at his car door he turned back and said, through the wide-open space between us all, “I love you.”
The decisions we had to make didn’t seem like decisions; they seemed like sentences.
We had decided to sign the Do Not Resuscitate papers a week after we brought Liam home. Chris and Liam and I sat with our hospice nurse in silence for a long time when I laid the paper down on the table after signing it. What else could we do? Hearts breaking are oppressively silent.
I felt literally shattered. Knowing our son could die at any moment, there was an actual physical feeling that all the cells of my body were exploding and flying out from me. Every face and flower and song had more than one meaning; the universe was telling me a story, life had a narrative of its own. Every dream told me a new secret, and I was trying to take it all in to make sense of this catastrophe so utterly awful it was absurd. That obsession with interpreting the signs around me transformed everything I saw from then on; it still does. I guess I was desperate to find meaning and reason in that unreasonable situation; I sought it out and saw meaning and symbolism everywhere, obsessively.
Ordinary things in an average day that summer were different too.
I learned to make do.
I had to make sure I had a blanket with me when I went to the grocery store not just to keep Liam warm, but because I might need it to cover him up if he died while I was in the store.
I wanted people we knew to meet him, but made sure the visits were short. Only a few of our closest friends came to our house for longer than a half hour. When other people were around, I became more aware of how different Liam’s behavior was from a healthy baby’s, and it hurt too much to be aware of that for too long, and for anyone else to see it.
The cards and flowers that arrived when we got home from the hospital said “thinking of you” and offered condolences instead of congratulations for the birth of our son.
Near the end, he’d grown so thin that strangers were surprised when I told them how old he was. Sometimes I lied and said yes, he was born premature. Sometimes I didn’t have the strength to lie, told them the truth, and felt bad for them when the shock of it registered on their faces.
I learned ordinary days and average things were all impermanent illusions too.
Living a life, I learned, while waiting for death was like living in the space where one breath ends and the other has not yet begun. It was like sleepwalking through my worst nightmare feeling more awake, and acutely aware, than I ever had been in my life; it was like drowning in thin air, like standing on a deserted shore in awe of a squall that was pulling back and gathering its force to crush me. I learned I could be, at the same time, overwhelmed with natural great love for my child who was teaching me more than I could have learned in thirty-three lifetimes without him, even though the one I gave him was rushing by quicker than most.
Liam had an equanimous presence and was astonishingly beautiful, like a Tibetan blue poppy, a sublime and rare blossom once thought to be mythical. I am told still by the handful of people who met him that he compelled them to think in a way they never had, and that he still comes to mind even though it was a short time he was here and he has been gone a long time.
The poppy’s petals, an uncommon blue, evoke with its hue the cloudless sky, the vast ocean, or the true nature of the mind that abides in equanimity despite unrelenting waves of illusion and always changing clouds of desire and attachment. In the center of the poppy’s cupped petals are mustard-yellow stamens—a bright, happy contrast to the profound, solemn blue that surrounds them. In the center of that Something Worse summer there was, despite it all, Liam. And there were some things to learn. It’s natural that two aspects of one thing so different in shading, like joy and sorrow, exist side-by-side, one within the other. And the blue poppy’s beauty is undiminished by the true, sad fact that it won’t last forever, maybe not very long at all.
When Liam died I tried to hold on to that new appreciation for accepting all aspects, the light and dark, of any situation, allowing for the joy that was the gift of his presence to take root in my life, instead of the pain and anger that his loss left. To bloom in mid-July, blue poppies require cool temperatures; they need the cold if they’re going to flourish. That summer brought a cold reality of existence to life for me; I had to accept the hardship and pain with the beauty and happiness.
To see a gift amid my devastation could not have been a harder thing for me to do. But I wanted to believe it wasn’t impossible. I hoped it wasn’t an anathema to embrace that gift, as repugnant as it may at first seem to others to see my devastation as a teaching, a source from which to grow, and a chance to change my mind about what it means to be blessed with a rare human birth. A changed mind came to me for having known Liam. The less-awake person I was before passed away. I learned I knew how to stand—grateful—in the rain when he was with me, when I was filled up with sorrow and delight.