When life is fragile and weighted and holy…

Shared with permission by Rev. Angela Denker and her site I’m Listening. 

Usually I’ve already sent out a newsletter by this time, on this day, the fourth Tuesday of the month. Usually I wrote it the week before, but this time I wanted to wait, because I had plans to visit North Carolina and speak before a large group of people, and I figured I’d have photos and stories to share.

I planned on feeling renewed and excited and enriched and energized.

I don’t have any photos to share with you, though, because I didn’t go to North Carolina.

On the morning my flight was supposed to leave, I grabbed my toiletries bag and went to the hospital instead.

More than four years after the terror of the global COVID-19 pandemic first began, my son was coughing and fevering and breathing shakily, a white blurry cloud gathering in the lower lobe of his left lung. They told us earlier that week he had pneumonia after an uncomplicated strep infection, and none of the medicine was working, and his fevers just kept getting worse.

I feel like I started shaking that morning, or really days before, when he woke me up at 3 a.m. feverish and sickly, and I haven’t quite been able to stop yet. I have to keep reminding myself to breathe.

In the hospital on that first night, lying on the plastic cot next to his bed, I grabbed his hand and told him to breathe, too. Just a few hours before he’d been excited to order a chocolate chip cookie for dinner off the hospital menu, and choose a movie to watch. Now, he was coughing and out-of-sorts. He didn’t want to attach the plastic oxygen to his nostrils; he hated the IV in his hand. He was mad and out of breath.

Every time that night, and the one that followed, when he’d wake up at night, he’d lift up his head and look over to make sure I was there. I slept in snatches, like I did when he was a baby, and every little noise he made caused my heart to jump.

I remembered our home in Southern California, and how I brought him to a home daycare just a block away from my work. When I’d come back in the afternoons to pick him up, sometimes Ouida would be holding him and rocking him outside. He’d been crying for a long time. He wasn’t sick, just, he always let us know when something bothered him.

I would take him from her and this thing would happen where he sort of melted into my arms, like the lines that had separated our bodies since he was cut out of my abdomen in an emergency surgery had receded into the air, and we were one once again.

Our breaths matched each other: in and out, in and out. Everything was going to be OK.

He was my second baby, my second son, different and alike his brother in so many ways. I had rarely heard a baby with an angrier cry, and had never seen a face so angelic when he was peacefully asleep. He had the best smiles. He’s even almost smiling in some of his newborn photos, the ones in which he refused to sleep, even a little bit. He’s staring up at me in each of them: “Here I am! Don’t take photos of me when I’m unaware. I’m here!”

***

In the hospital I felt that same psychic connection I always had. Even on the third night, when I forced myself to go home so that my husband could stay over and I could do some laundry, I woke myself up at 3:15 a.m. and texted, because I just knew his fever was spiking again. It was. He was OK. His dad and the nurses were there for him. But I could feel the pain in my chest, the anxiety in my head, as he woke and tossed and coughed.

That night everywhere I walked in the house I repeated to myself an incantation: “He’s gonna be home tomorrow,” keeping myself from completely falling apart. I ate a few handfuls of tater tots for dinner and folded laundry at 4 a.m. when I couldn’t sleep.

The thing is - he was home tomorrow. The doctor and my husband FaceTimed me in early the next morning. They were going to discharge. They’d done some tests and he was improving, even though he did keep getting fevers. He’d be on medicine at home for four more days. They expected him to still be recovering. The doctor warned me about taking too many temperatures or checking his oxygen. She knew.

***

This story isn’t only about my son, or about me.

When I write it I see the face of a small boy close to my son’s age. His name was Dima, and he was living in an orphanage in Russia in the early 90s, when I was my son’s age. I remember reading about Dima in the newspaper, about the difficulty for children with special needs as the Soviet Union collapsed. I did something silly and ineffectual, like sending the newspaper a letter I wrote meant for Dima.

Except I guess it wasn’t silly or ineffectual for me, because I still remember him.

In my work I am fortunate to spend a lot of time with both children and elderly adults. In some ways perhaps they are holier and more spiritual than any of the rest of us, the closer they are to God, to the beginning and end of earthly life. They cannot hide their mortality and fragility the way the rest of try frantically to do.

While we were in the hospital the chaplain came by, except when she asked to talk I thought she was a doctor delivering bad news, and I panicked. I wasn’t ready to be cared for; it felt scary to admit that I needed care. I was in survival mode, clinging onto hope with my fingernails, drinking coffee in the morning and hearing myself breathe at night.

At the children’s hospital you can’t help but see not just your child but all the children, the ones whose families drive in from hours away, and can’t go home to do laundry or to bring fresh clothes, so the kids don’t have to wear the hospital pajamas, which are itchy and sometimes irritating due to be being washed with antibacterial soap so many times.

Every day mid-morning a little girl would be pulled around the halls by a member of the hospital staff, on a little makeshift plastic wagon. I would always wave. I didn’t know how long she’d been riding, except my husband met another dad in the elevator who said they’d been there two months.

Two. Months.

The nurse told us the other day that they celebrated the birthday of a baby who’d turned 1. One year old, and had never left the hospital.

This week, back at home, I started asking my friends and fellow moms, tentatively, if they’d ever been to the children’s hospital. Sometimes their stories reminded me of stories I’d known, but hadn’t been privy to the details of. Sometimes I heard stories I’d never known. Scary, fitful nights in a sterile, dry room. The monster of fear that eats away at your insides, giving your face a sort of sunken and gnawed look, heavy bags under your eyes, red lines crisscrossing your eyeballs, the blood working its way to the outside of your face, bleeding your pain out all over for the world to see. Maybe I’d vaguely known some of these stories, but I hadn’t felt them until now. We talked about how you compartmentalize the suffering and store it away.

Our nurse told us about how she’d work here all day, surrounded by kids suffering and healing and getting better and sometimes getting sicker - and then she’d go home and watch her kids play traveling baseball. I thought about our own boys’ youth sports: the yelling parents, the costly uniforms and shimmering medals. Childhood felt like a mirage, how could it exist in both worlds of delight and despair? How could parenting be such rich joy and such deep sorrow and pain?

***

As I write this, I feel that thing happening again, where my heart opens itself in vulnerability and pain, only to be touched by a deeper sense of love that I have rarely ever known. I teach often about a theological idea known as the Theology of the Cross. I believe in it more than I believe probably anything else about God.

This 500-year-old theology teaches that it is in moments of suffering, pain, and despair that God draws nearest to us. In contrast to the idolatrous Theology of Glory, which like the Prosperity Gospel says that following God brings riches, influence, and power - the Theology of the Cross says that when you are following God most closely, you are most likely to experience the world’s deepest pain and suffering, and in these moments to be reminded that God works most powerfully in those whom the world has cast aside as weak or ineffectual or unacceptably at-risk.

I watched our world in COVID toss aside this philosophy, as we again and again pledged to sacrifice the most vulnerable on the altar of economic progress and the idol of busyness and unfettered consumption. As though somehow our most valuable had no value at all, because we make our choices by accounting and balance sheets.

In the hospital, lying there in complete vulnerability, all the artifice of human power and progress fell away. We were reliant, absolutely, on science and machines and human ingenuity and chemistry and medical devices. But even more so, we were reliant on love and care for one another. My son’s nurses and doctors could know what he needed, but AI could not look into his eyes or squeeze his hand or sense what was a worsening illness and what was fear and anxiety masking itself as heightened symptoms.

Children are not particularly productive, nor should they be. They exist best as pure joy: as hugs and laughter and delight and jokes and need expressed and fulfilled.

I knew in my utter fear and anxiety for my son that in these moments I was living what I had previously preached: that my faith was rooted deeply at the foot of the cross. Here I met the God who suffered and died and rose again, the God who demanded that the little children come first to him, the God who sees the value of people not in their bank account or their influence but in their heart and soul, the common connective tissue that propels us to save a life, any life, because life itself is the most precious thing ever created. Its value is intrinsic, utterly of itself, no need for further justification.

***

I type, I breathe. He is downstairs now, playing a game. The green leaves with yellow buds hang heavy in the tree outside. It’s summer, and kids are walking up to the neighborhood wading pool, floaties on their arms, their brightly colored flip-flops flapping loudly against the sidewalk.

I breathe, he coughs. If I could make him better instantly, I would. I would breathe each breath for him. He is healing at his own pace, and I cannot rush through this time back to our “normal” schedule and frenzied pace.

The world and its threats and terror renew themselves each day. I think about how every parent, if you asked us, we would die if we needed to for our child. It’s survival instinct subsumed by something greater, an instinct to love and protect one another. What if that instinct governed our world?

Instead, it is something harder that I must learn. The challenge is not to die for the ones you love but to live, to live, to live.