“I didn’t yet understand that when humanity protects the frail among us, and works to ensure their survival, the human project as a whole gets stronger.” — John Green
I don’t know why I woke up.
I still think about what could have happened if I hadn’t.
It was about 3 a.m. We were living with my in-laws because we couldn’t afford to stay in our house. Like most medical mamas, I had to quit my job to take care of my children’s needs full-time.
The twins had a bunk bed but the bottom mattress was on the floor so that Mack* didn’t fall out of bed.
They had been fine when I went to bed. Maybe some sniffles. You know how three-year-olds are.
Perhaps it was his odd breathing that woke me up. That rrrrrrrrrrapa rrrrrrrrrrrrapa, like a notched stick in a preschool music class.
When I turned on the light, Mack looked at me from the floor with fear in his huge blue eyes. A skinny little guy who couldn’t get enough calories no matter how much Pediasure I bought.
I saw his flexible chest cave in with each breath instead of puffing outward — much like it had in the ICU after he was born.
Loud, seal-like barking cough.
OK, croup, I thought. I know croup. Get inside a bathroom with a hot shower on. No, get outside to fresh, cold air.
This is wrong, my mama brain cried. Get help.
I woke up my husband. My in-laws were soon up, too. We debated briefly but my mind was already racing towards the emergency room. My husband would drive, and I would hold Mack in the back with the window down, and the December air would blow on his face, and we would pray that his breathing would improve, and that we wouldn’t need the emergency room by the time we got there.
I rushed around to grab a couple things for the trip. It was then I finally remembered.
Mack’s identical twin lay on the top bunk, eyes open but still.
Jasper*, a very active three-year-old boy, was never still. Not even in his sleep.
“Jasper, honey, are you OK?”
No response. Just staring at the wall, laying on his tummy.
“Jasper.” I laid my hand on his pajamaed back, jostled him gently. “Jasper.”
And then he said, in his tiny toddler voice, so softly, but so clear, like a note that breaks a rock in half:
“I don’t want my brudder to die.”
Children like mine have always reminded me of the story of Icarus, the legendary boy who flew too close to the sun and plummeted to his death in the sea. Restored to life by modern medicine, our children seem to flutter back and forth across the valley of death. They float in and out of the hospital, always too close to the sun.
Especially in winter, I frequently log into Facebook and someone in my local community or in one of our large groups is announcing the death of their little one. It is a reality that those around us, living their typical American lives, don’t know exists. Medical mothers are in an unseen war with death, casualties mounting up left and right, as we duck and dodge.
The callous among us — and I painfully admit that I used to be one of them — believe that a disabled life is a shadow of a life, a life not worth living. So, what does it matter if they die?
Echoes of this are heard in reports of COVID-19 deaths. A 19-year-old died in my state this week, as had her grandparents, The Oregonian reported. The report made sure to include that this young woman had pre-existing conditions of some sort.
Let me tell you what I’ve seen: the devastation when a child dies is not lessened by the existence or “pre-existence” of conditions. In fact — though I’m not sure someone can be more devastated than devastated — I can also bear witness to how devoting one’s identity and daily life to keeping a child alive gives medical mamas chronic trauma. We think and plan, but are never ready, for that one terrible day when our luck runs out and our efforts no longer keep death at bay.
In my state, the major research hospital predicts we will be short around 500 hospital beds by Labor Day. Those beds that our kids occupy on a semi-regular basis are filled with other people’s kids now. Maybe their conditions pre-exist or maybe they will exist ever-after, thanks to this virus that causes long-term damage.
People wonder why the United States has failed to control COVID-19. Is it politics? Conspiracy? Laziness? Apathy? Incompetence?
I think it is largely a lack of imagination. These days, so few Americans have a personal relationship with death that they don’t believe it’s real. So few Americans have seen a child struggle for breath that they don’t realize it’s possible. So few Americans have seen a society without vaccines that they don’t understand how they make any difference.
Without that vision, that intimate familiarity with death, motivation never materializes.
When we got to the emergency room, I carried Mack in my arms to the triage nurse. I had been to hospitals before. I knew the bored look on staff’s faces, the dismissal of pain with a wave to the lobby, and the hours’-long wait to be seen while all you wanted to do was scream.
But this was not that.
No, this was the first time that I brought my medical problem to a professional and they reacted with the sort of urgency and alarm that I had always seen on TV but never, ever experienced in real life. The nurse took one look at Mack’s labored breathing and began running toward a treatment room. In a daze, I followed, still unsure I had permission to let go of the calm-reasonable-person-who-should-be-listened-to-because-this-is-a-genuine-emergency persona. He turned back to see what was taking me so long and barked: “RUN.”
So I did.
Mack got a steroid nebulizer breathing treatment and stabilized over the next couple hours. He would go on to visit the hospital again for another bout of croup the next winter and would probably have needed to go several more times — including a couple weeks ago — if we hadn’t learned several techniques to improve his breathing and mucous management when he gets sick. These were for the regular colds and flus that no one used to think much about.
As the delta variant rages outside, my family has gone back to hiding in our house. We cannot catch anything now.
There is nowhere to run to.
*Not their real names
Medical Motherhood’s news roundup
• From the New York Times: Families of High-Risk Children Despair Over Covid Resurgence
“There literally are not words for the frustration but also the fury that I feel that this has gone on as long as it has,” she said in an interview. “It didn’t have to be this way. It didn’t.”
The Delta variant has led to a surge in coronavirus cases and hospitalizations across the country, leaving families with high-risk children who can’t be vaccinated especially concerned. Like Ms. Chandra, a growing number have shared their stories online, accompanied by desperate pleas for people to become inoculated, for the sake of their children.
• From The Wall Street Journal: The Delta Variant and Beyond: Learning to Live With Covid
Unfortunately, despite its role in hastening such developments, Covid is likely here to stay. It will almost certainly become endemic, continuing to spread and to flare up at different times and places for many years. The latest evidence suggests that variants can evade infection-induced immunity, and that immunity from infection is not as strong as immunity from vaccination. To limit the risk and damage, given how infectious the new variants are, we would need to vaccinate more than 85% of people. But there’s too much vaccine hesitancy in the U.S. and many other countries, and too little vaccine globally, to achieve this threshold any time soon.
• From The Washington Post: ‘This is real’: Fear and hope in an Arkansas pediatric ICU
Amid the delta-fueled coronavirus surge, the American Academy of Pediatrics reported a nearly sevenfold increase in new child covid infections in one month: In the first week of July, there were 12,000 cases nationwide. By the first week of August, the number had grown to 96,000 — representing about 15 percent of all new infections.
As of Thursday, 1,785 children with suspected or confirmed covid-19 cases were hospitalized across the country, according to a Washington Post analysis. Florida leads the country in child hospitalizations — with 247 children with covid-19 admitted last week, a rate of 35 new admissions a day.
Doctors at major children’s hospitals say nearly all of their patients are unvaccinated. They are either under age 12 and not yet eligible for the coronavirus shots, or teens who put off the vaccine.
Medical Motherhood is a weekly subscriber-funded newsletter for people raising disabled children. Get it delivered to your inbox each Sunday morning.
Visit the Medical Motherhood merchandise store.
Buy a gift subscription.