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November 17, 2020

I’ve been thinking about my preemies a lot this year—the year of the Corona Virus Pandemic. A year of obsessing, of worry, of feeling helpless—like the months before and after Isaac and Molly’s remarkable and traumatic entry into this world.

Masked Molly. This is a placeholder image, as we are officially celebrating this birthday on Saturday. I will upload their birthday photo then,
Meantime, consider this a gentle reminder to protect our most vulnerable (preemies, elderly, immuno-compromised) by wearing a mask. Thank you.

Unlike 2020, which has mostly been a blur of anxiety, 1991-92 exists in acute detail in my memory. Back then, we learned first hand that nurses were heroes. Like the nurses of the pandemic, they took care of our family when we could not.

People often ask how we did it. How did we survive? It’s a moot question, of course. One doesn’t have a choice about (most) health crises. We were so lucky. We had friends and family and excellent health insurance and compassionate, skilled caretakers.

It’s not surprising that this pandemic takes me right back to the NICU. The experience of severe COVID is frighteningly similar to that of our prematurity journey: trouble breathing, long-term hospitalization, intubation, ventilators, oxygen saturation, lung damage, unpredictability, organ shutdown, experimental treatments, corticosteroids. long-term consequences for survivors. Fear. I worry that my preemies are potentially more vulnerable if they were to contract COVID.

Back then, we lived just over a mile from the hospital where our sick babies spent nearly six months. The day I was discharged, I went home and showered before returning to my babies in the neonatal intensive care unit (NICU—or ISCU, infant special care unit, as it was called in our hospital). We could—and did—visit any time, day or night.

People hospitalized with COVID don’t have the comfort of family visits. Families don’t have even the tiny feeling of being able to do something by visiting sick relatives. People are dying alone, and families are being robbed of the opportunity to say goodbye. My heart aches for them.

I think about the families who aren’t as lucky as we are. Families that can’t afford healthcare. I obsess over whether we are about to lose the protections of the Affordable Care Act, which allowed us to keep Isaac on our insurance until he was 26 years old. It also protects Molly’s right to health insurance, which had been denied to her because of her early surgery to repair an atrial septal defect (ASD). Though completely healed through that remarkable surgery on her tiny, walnut-sized heart so many years ago, and though her amazing cardiologist (the late, great Dr. Roger Cole) attested that she would never suffer any symptoms related to her ASD, it will dog her as a preexisting condition for the rest of her life.

2020 has brought into focus the deep racial divides in our country, disparities we can no longer afford to ignore or pretend not to see. We have learned that people of color have suffered disproportionately from the ravages of COVID-19. When my twins were in the hospital, I obsessed over everything related to prematurity—reading and studying and asking questions, because I was helpless to do anything else. I learned that black women are at greater risk for delivering prematurely and that racial bias affects the treatment of preemies of color. This was true 29 years ago, and it is still true today.

The through note of all these obsessive thoughts is what it would be like if my babies were on the NICU now. I can’t even imagine. When we visited them, we had to scrub up and don PPE (an initialism that wasn’t even in our vocabulary back then). We felt isolated, spending little time with friends and relatives for fear of catching a cold or the flu or some other bug that we could pass on to our immuno-compromised babies. What must it be like for preemie parents who aren’t permitted to visit their babies for fear of passing on or contracting COVID-19?

This would be the nightmare of nightmares.

Me—masked in 1991—to protect Isaac. Masks were vital (and cool!) then; still vital now.
Please wear a mask.

It’s hard not to be angry these days. I’m furious at those who refuse to wear a mask, who won’t take even this simple step to protect our most vulnerable. I’m livid when I remember the president mocking a reporter’s disability, a gut-punch to every parent of a child with a disability. It’s a visceral reminder of the pain I felt when my child was teased and mocked and excluded. I despair over the lack of empathy and compassion, the hatred we are spewing at each other, when we should be coming together to overcome the very real challenges this wretched year has thrown at us.

These are the obsessions that have plagued me during 2020, a year when we all have too much time to obsess.

But today is a day of celebration and reflection. Our tiny, vulnerable, incredibly sick little preemies are now 29 years old. They are healthy. They are as happy as any of us can be this year. They are coping with the challenges of the virus, the economy, the lack of equal justice. They are employed. They voted.

Today is also World Prematurity Day. I’m convinced the fact that it falls on my preemies’ birthday is no coincidence. It is a day when I reflect on how lucky we are. A day when I grieve with preemie families who have suffered incredible loss. And a day when I think about the many lessons I have learned from these two remarkable humans.

This year, I am trying to dwell on Isaac’s compassion. I’m in short supply. I think most of us are. Isaac is the kindest person I know. While I marvel at everything Molly accomplishes by doing (an idle Molly is an unhappy Molly), Isaac’s gifts are less visible. His good humor rarely waivers. His patience for us mortals and our foibles is unmatched. He is the personification of compassion. The world sometimes sees Isaac as someone who is different. My wish for the world is that we can learn to see things the way Isaac does. That is to say differently.

In this very different year, so many things are beyond our control. But in this one way, we do have a choice. We can choose compassion. And when they ask how we did it, how we survived 2020, this will be the answer.

One Comment leave one →
  1. KENNETH L BEARMAN permalink
    November 17, 2020 12:58 pm

    Wiping the tears away, you hit all the nails on the head again. You should turn all these blogs and your 2 yellow books into a beautiful story.

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