Piéta.

How I stopped worrying about my (and everybody else's) kids dying

I tricked you with that clickbait title, didn’t I?

Spoiler alert: I haven’t stopped worrying. Yet.

I mean, how can I?

How can I, when all the parents of trans kids in my church (and everywhere) are absolutely terrified for their children’s safety and well-being: terrified they will be bullied at school as transphobia gets louder and more socially acceptable; terrified they won’t be able to get back into the country if they leave for any reason, and the worst worry of all: that goaded by all the anti-trans legislation and rhetoric saying they shouldn’t or in fact, already do not exist, their children will take matters into their own hands and die by suicide.

Image: Protect Trans Kids patch.

How can I not worry when young men with tattoos honoring their moms and dads are ziptied by ICE agents who know they are innocent and sent to what may be a life (or a death) sentence in a Salvadoran slave prison without due process? When our president jokes with the “world’s coolest dictator” as they walk into the Oval Office that he can’t wait for him to build 5 more such for-profit prisons for the “home-growns”?

Thousands of young men slapped, scapegoated, shaven and forced into a profane and heartless geometry designed to make us stop seeing them as individual human beings with lives, thoughts, dreams, consciences, callings; with parents and spouses and children who miss them, people who depend upon their love and their labor to survive.

Image: Hundreds of shorn prisoners sitting spread-eagle, butt to business, on the floor of CECOT prison.

What if they are all beyond reach now, forced into a jellied mass of undifferentiated flesh that never again gets to see daylight, smell spring flowers, have a tickle fest, do meaningful work, sleep with the lights off? Or what if by some miracle the courts and our activism succeed in bringing them home–but they have been so thoroughly tortured and dehumanized that their psyches can’t ever fully return? We’re talking about generations of trauma being forged right now. We’ve seen this happen as polarizing, dehumanizing violence increased in other countries. Now it is happening in our own.

Image: screenshot of Rabbi Danya Ruttenberg’s reminder that “Concentration camps are not the same as extermination camps. Both were/are horrific. Most Nazi camps were outside Germany, away from the eyes of German citizens.”

Consider Kilmar Abrego Garcia, a young working dad raising 3 special needs children, an immigrant who previously escaped violence in El Salvador and had a court-ordered right to remain safely in the US.

It’s almost too on the nose how closely his story parallels the Holy Week arc of Jesus: a sinless scapegoat, made an example of by the Empire, denied due process and sent to his death while the real domestic terrorists get pardoned like Barabbas.

Kilmar Abrego Garcia with his baby.

How can I not worry when so many children right here are under threat of having their special ed accommodations incinerated, their access to free or low-cost food stolen, their health care annihilated? I grew up on Medicaid and food stamps and housing vouchers in the 70s. When I got strep throat, which happened a lot, my mom took me to Dr. Terry at Hartford Hospital. He used a wooden tongue depressor to diagnose me, prescribed antibiotics, and sent me on my way before strep became rheumatic fever or a kidney infection. I am an example of the kind of life the social safety net can yield.

So yeah: I’m worried. Worry about my-and-everybody-else’s-kids is a faithful stance. Mary worried. And wept. Her obsession with Jesus dying started as soon as he was born; all those visitors crowded in, crowning him: she “pondered all these things in her heart.” That’s a poetic way to say: she was scared shitless at what it all meant. What mother truly wants their child to be famous? To fly high is to court a fate like Icarus.

And you might say her worry was right on the mark. Just because you’re paranoid doesn’t mean they aren’t out to get your child. On the last day of her son’s life, she would not leave the foot of the cross.

I’m always most deeply touched by this part of the Good Friday story. Jesus uses some of his labored and vanishing breath to look down at his mother, and then at his best friend, and give them to each other.

“Woman, behold your son.” “Behold your mother.” Even in the midst of dying, Jesus was still saving. He knew if his mother was not going to drown in grief over losing him, she would need another child to love and take responsibility for.

But of course, there’s no such thing as a replacement child. Parents are not supposed to survive their children. Even though it happens all the time, it feels distressingly, world-shakingly wrong. I remember seeing an image of Michaelangelo’s Piéta for the first time in seminary.

Image: Michaelangelo’s Pieta

Even though I wasn’t a mother yet, I felt in my own body the weight of His body in Her hands. My professor pointed out her size. If Jesus were standing, he would be considerably shorter and thinner than Mary. Michelangelo was depicting the strength it takes a mother to survive her child’s senseless and violent death.

I’m gonna take a personal turn here. I’ve spent more than the usual amount of time worrying about my kids lately. Those of you who have read my memoir How to Begin all the way through to the end know what grief and fear I was enslaved to during our son’s mid-to-late teenage years because of depression, substance use and family trauma.

I’m happy to report he’s doing really well. He’s a STEM major in college, has his own apartment, is adulting responsibly, and is probably as happy as he’s ever been in his life. I still worry. I’d be abdicating responsibility if I didn’t. But he’s 23 now, and his prefrontal cortex is definitely firing on almost all of its cylinders. I can breathe.

So now his sister gets more than her fair share of my maternal angst. At 19, she’s starting her rebellion individuation late. She just spent her spring break hiking the Grand Canyon with a new bestie from college. I fully admit I didn’t want them to go. There were so many ways they could die! They could get in a flaming car wreck with a Tesla truck in LA-adjacent traffic. They could break down by the side of the highway and die crawling through the desert for water. They could be raped by drifters and thrown off the rim of the canyon. They could have survived getting thrown into the canyon only to be eaten by jackals. Or wooed out of the bottom of the canyon by a patriarchal neo-Catholic cult only to be held for decades in an underground bunker in MAGA SoCal (it’s not that far-fetched!).

They could take on the Canyon without adequate planning or equipment and get lost and die of exposure, or slide off the ice-covered trail and plummet to their deaths while shimmying up the last 3 miles in the dark (oddly specific example for *reasons!*).

Or Carmen could simply have a very ordinary, could-have-predicted it, anaphylactic episode after eating a sneaky snack 5,000 vertical feet below civilization on the Canyon floor, and die by suffocation in the arms of her friend.

There would be no coming back from the dead for her.

This line of thought dominated my brain for the better part of two weeks, until she emerged from the bottom of the canyon and sent me this picture. Brava Carmen and your self-chosen rite of passage into adulthood!

Carmen in the foreground with her friend dear friend M.

I come by a lot of my mother-worries honestly. Carmen is small, and most of her life was extremely small for her age until she spent 2 years injecting herself nightly with human growth hormone. The anaphylactic food allergies that rule her life have been a bug AND a feature since the first time I gave her baby formula at age 5 months. Her whole body turned turned crimson, she couldn’t stop vomiting and we raced her tiny purpling body to the ER only to find that she was allergic to all tree nuts, peanuts, sesame, soy, mango, and most frighteningly: Dairy. Every form of dairy, even in trace amounts. A teaspoon of milk, absent an Epipen or other interventions, can still kill her in under 10 minutes.

So began our journey as allergy-parents. We were slow learners: we didn’t clear the house of offensive foods until a month later, when she crawled across the floor and popped an errant macadamia nut in her mouth, sending her to the ER. She kept having breakthrough reactions to all kinds of foods that should have been safe. We tallied more epipens and ambulance rides.

When she was just over a year old, I was down the street at a wake for a church member. I heard the ambulance siren, felt my phone vibrate in my pocket a minute later, and just knew. Running home in my high heels, I sob-screamed backward at my best friend who was running with me, “HOW AM I SUPPOSED TO KEEP HER ALIVE?!?”

She has been bullied for her allergies throughout her life. One time a kindergartner poured milk onto her lunch when her back was turned, to see what would happen. Even up through high school, bros would joke “so if I snuck some dairy into your food, I could kill you?”

Carmen didn’t go to camp by herself till she was 16 years old. Nor eat in restaurants (now she eats at vegan restaurants only after careful inquiry). She has missed out on a lot of casual communion with other teenagers, spent a lot of time eating alone, and has worried she’s pissing off other youth group kids when they can’t eat Doritos in the van on the way to work camp.

We’ve taken some amazing trips: to the group home in Mexico where Peter and I used to work! To meet third cousins in her ancestral Spanish village! But travel always necessitates me spending hours foraging, washing and cooking in a kitchen I’ve made kosher, or her eating a LOT of crackers and sardines so we don’t have to go to an ER with a language barrier.

Many of you know what it’s like to have an enormous love for someone whose life hangs in the balance. It’s like I have a kid with leukemia or another dread disease–except for all intents and purposes, most of the time she’s walking around in the pink of health. She has a long-term illness that might kill her within minutes, and then again: she’s just fine.

And there’s no proactive treatment protocol. No chemo, as abhorrent as it is. No surgery. No immunotherapy for someone with allergies as severe as hers. Nothing to do but wait and hope the worst doesn’t happen.

To make matters worse, for many years, I was the single point of failure between her and death. I was her jailer (“no you can’t go to that pizza party, even with your own food”) and her possible accidental executioner (like the day after Christmas at my sister-in-law’s house when I was still in the fog of chemo brain and I POURED THE WRONG MILK into my 4-year-old’s Cheerios. I cried all night next to her little bed at Children’s Hospital Oakland).

Living with that sword of Damocles hanging over your child’s head for years takes a toll. In stress. In hypervigilance. In the effort and planning it takes to shelter your child as best you can, in guilt and trauma when even your best efforts fail to buffer them from harm and you see them standing at the edge, racing forward to catch them by the sleeve before they fall off the cliff, over and over, a recurring nightmare except you’re awake.

This is why I feel so bonded to Mother Mary, who grokked from the beginning what the score was. I couldn’t change Carmen’s fate. All I could do was protect her as well as I could, and bring as much normalcy and joy as possible into her life until she would have to assume responsibility for her own destiny.

Which fully happened when she became a college student this past year. Carmen has been doing a fantastic job not poisoning herself! But then through no fault of her own, she found herself in an ambulance going to the hospital after a horrific dairy exposure. It took 3 epipens to bring her back. She felt her whole body shutting down, and rather than panic, a calm acceptance took over her mind. “This is it,” she remembered thinking. “This is how and when I die.” It was as sure as the sun setting over the Pacific outside her dorm room.

Except: thank you God and epinephrine. Thank you surprise Easters I don’t understand. Because she DID come back from the dead. That third epipen overcame her body’s march toward obstructed airways, coma and death.

And even better than that: after nearly 19 years of living like this, we are in the process of getting another miracle.

Because there’s a new treatment protocol for children and young adults who have even very severe allergies. Right now it’s only available in one clinic, which people fly their children thousands of miles to participate in–and it happens to be half an hour from her college.

The protocol is a form of OIT, and I won’t get into the immunological weeds on it (except for those who are interested–DM me!), but with a brilliant twist. She will start not with cow milk, but with biosimilar proteins that will gradually retrain her immune system not to understand milk protein as dangerous. It’s life-altering and life-saving. The week after Easter, I’ll fly to San Diego to take her to the Food Allergy Institute (I hope they work on the name! Before my first visit I felt sure it was a scam and the address would lead us to an abandoned Shell gas station or something), where they will administer a microdose of denatured camel milk.

Our launch visit to FAI last month!

After that first dose, we will go to our friend’s house and I’ll boil up a cauldron of this magic elixir (if you wonder where one can buy camel’s milk to denature, the answer should be obvious: the Internet!) then pour it into strictly portioned breast milk bags for her to self-administer increasing daily doses.

When she can tolerate sufficient amounts of camel milk, she’ll progress to mare milk, donkey milk, sheep then goat and finally cow milk. The process will take a little over two years. But by then, if all goes well, as it has already with countless other patients, she will achieve “Food Freedom.”

After our launch visit 5 weeks ago, where we learned the results of her extensive blood and skin testing and got her 2-year roadmap to food freedom, we both cried. I cried in the parking lot (my go-to for ugly-crying!). She waited till she was safely in her dorm room, then let loose.

I knew the sobbing was not just a release from the day, the weariness of yet another multi-hour experience in a medicalized setting, but the dam breaking after nearly 19 years of body trauma and mental anguish. All that she had gone through, suffered, carried (nearly) alone among her peers. All that we had been through as a family. All the resiliency which she shouldn’t have had to forge. All the terrifying times, all the annoying times, all the sad times, all the bullying times, all the left out of family feasting times, all the soggy eggrolls in a tupperware at a convivial restaurant times.

I just held her while she sagged soggily in my arms and cried all over my sleeve, and whispered in her ear a long litany of her pain, her suffering, her triumph, then added, “soon, you will start meeting people who never knew you as Allergic Girl. If you feel like it, you might explain it to them–but they won’t understand, not unless they have suffered themselves, from allergies or another chronic illness in childhood that they were magically cured of. You will never be able to communicate adequately how it shaped you–but it did shape you. You are so strong, so brave, so feeling, so empathetic, so adventurous, so HEALTHY. And you will carry that into anything you choose to do.”

She sobbed through my whole soliloquy and then we got in bed and spooned and she just cried some more; a lot more. It’s so BIG. She’s been through so MUCH and she has shed so many tears, but always aware that the monsters were still in the closet, just waiting for another opportunity to kill her. And they still are–perhaps they always will be, the spectre of anaphylaxis. Even with this novel treatment, it is recommended that she always carry her epipen.

But for now, she has filled out the adorable mock passport they gave her, which asks on the first page, “what food can’t you wait to try when you achieve food freedom?” and “what restaurant will you eat at?”

And she wrote, “melted brie with honey, jam and almonds and salami (?),” and “Chez Panisse.” (totally my kid!)

The Passport.

Here’s the thing about hardship that has curdled into trauma. Just because the immediate threat is gone, doesn’t mean you instantly feel better. Carmen has years left of facing these particular fears, making herself eat dairy again and again in hopes that she can tame it.

And to draw this back to the public sphere: we all have years left of fighting fascism. Even if we succeed in making the immediate threats recede, we will have to stay vigilant, and we have to deal with the wreckage it has already worked: systemic, economic, mental, physical, emotional and spiritual.

We’re in a Pietá moment. Holding the bodies of our beloveds, the corpses of dreams and plans and jobs and relationships and sometimes actual bodies. Some of these bodies are still breathing. Others are dead, but may meet a surprise Easter and be resurrected in time. We don’t know how or why or which ones exactly.

But it’s important to honor this Pietá moment. The weight of grief at the foot of the cross. The quiet moment when the body has been deposed and we are trying to hold it with a disproportionate strength we didn’t know was in us.

The timeline to stop worrying about my kid is: never! Especially since she is still a young woman who rides in Ubers with creepy men & drives on California freeways rife with drugged-out speed demons & attends mass protests where unhinged MAGAs drive into the crowds (yes that just happened to her). Maybe I can just singlehandedly ban cars.

But this breakthrough in allergy treatment definitely means I can dial back my worry. I can moderate my grasping love into a grateful love as I watch my kid walk off into the wilderness (wearing the real hiking boots I made her wear instead of Chucks).

I know my job is to manage the line where my mother-love balloons into an overweening anxiety that threatens to infect her and halt her from becoming ever more herself. I remind myself that the more Carmen discovers herself—her dreams, her aptitudes, her reach, her bravery, her impact on the world and on her own soul–the more of her there is for me to love. And in the process she keeps discovering she can do hard and even harder things without me. Which is exactly what I always taught her.

So the sermon for myself is: don’t worry less. Just redistribute my worry over a broader field of humans to include other mothers’ children, because as James Baldwin said, “there is no such thing as other people’s children.” There’s plenty of cause for worry all around.

And the second note is: don’t let my mother-love/worry for all our children become paralyzing and polarizing. My job is to live into a mother-love/worry that is brave and tireless and can hold so much more weight than I imagine. A strength that waits AND works for an Easter miracle. A miracle that can even bring back the dead.

Christlove,
Molly

P.s. Go read this article. It’s scary, but I think it’s helpful-scary. We need to understand the shit the tech bro/theobro crossover is up to, in the name of Jesus. They need to get that name out of their mouths!

P.s. You might want to check out the Good Friday service my church is hosting tomorrow night at 7pm PT with 4 other local UCCs: including primarily Black queer City of Refuge UCC and primarily Japanese-American Sycamore UCC, where people still remember the open-air incarceration of Japanese Americans in WWII.