“What does it mean when there are two pink lines?”

Her voice is hesitant, eyes searching to find mine across the counter. She knows what it means. I know what it means. I turn to the test to confirm and slowly put on a mask.

When I was pregnant with my daughter, my brother-in-law took to calling her “Miracle” because, despite none of us having any particular tie to organized religion, that’s what she was. Nine years of unsuccessful infertility treatments had taken a toll, and we were planning to stop trying after this one last shot at IVF. When we worked up the resolve to hear the message from the fertility clinic with our results, the word “positive” brought me to my knees.

The pregnancy itself was fraught with hope alongside the fearful expectation that she would never make it. Each ultrasound brought new and disturbing information: She was too small, her heartbeat too slow, her skull bones weren’t forming, her spine had a defect, and she had a large omphalocele.   Yet, week after week, she continued to exist. Ultimately all of it self-corrected except her heart. They were calling her case a “tetralogy variant” and told us surgery would be inevitable.

When they placed her five-pound body into my arms, even before the first wave of love, I felt the enormous weight of responsibility. I have to take care of her. I have to keep her safe. When they discharged us from the hospital, they reminded us that the exertion of crying for too long could be fatal with her type of heart condition. They warned us not to let her cry.

Don’t let our newborn baby cry?

Even as an infant, Isabel loved to be held. We had to walk with her, sleep with her; we could hardly ever put her down (Don’t let her cry …).   We took turns rocking her deep into each night, early every morning. I can still feel the gentle weight of her body resting on my upper chest, the thrill of her heart’s murmur reaching for mine.

Isabel’s entire life has felt like we are cradling her in the middle of a river, balancing on a stone, hopping from one to the next, trying to reach the other side.   Always, there is this fear we could drop her if we lose focus and let down our guard. The pregnancy, her birth, the feeding tube, the surgery.   When she was 3, she had a urinary tract infection. When she was 5, she had a seizure. It was at that moment I fully realized the fear I had carried with me from the moment she was born –  for a few excruciating seconds, I held her unmoving and fragile body,  stiff and pale. I thought we had lost her. With each leap, we teeter on the edge until we miraculously find ourselves, once again,  temporarily secure.

And here we are on yet another stone, the river surging and lapping at our heels. I had kept her safe for 2 1/2 years (plus the seven years before). Trying to manage my own anxiety while not passing it on to her. Holding my breath while she climbs the 60-foot walls in her rock climbing club. Hearing her screams of joy through the rainforest as she ziplines ahead of me with a guide that I can’t see. Letting her take off her mask at school when the vaccine rate reached 85 percent and the CDC told us it was OK.

“I feel like I failed!” my precocious child sobs as we get her room ready for her five days of isolation. p

It is exactly how I have been feeling – that I failed her, failed to keep her safe. As a doctor, I carry the weight of that responsibility – my family trusts me to choose what is our risk tolerance. In the midst of a pandemic,  how do we continue to raise healthy kids in a safe way that allows them to grow?

She still craves the physical comfort of her infancy and is devastated that her isolation means distancing as well. She has started to keep a tally of hugs that she wants but can’t have so we can give them to her all at once when her isolation is over. I know that statistics show she will likely be “fine” – whatever that means regarding her physical and mental well-being. But I also know there are real risks of myocarditis, hepatitis, and long covid.

I jump into action. I call her cardiologist, her pediatrician. I isolate her from her brother and buy her books and games. I put on my N95 and sit with her to keep her company. When she’s afraid to sleep alone, I lie down with her, fully masked, windows open, sleeping back to back in her bed until morning. Part of it is parenting, but the part I know is punishing myself for letting down my guard and making decisions that have put her at risk.

I am angry at myself, but it is not just at myself that I am angry. The truth is I have failed her, but so have we all. The political divide, the inane fury about masking, the disinformation, the fear of the vaccines. None of us should be in this situation, and the children should not have to carry the burden of the choices that we have made.

For her sake and the sake of my family,  I have adopted a quiet optimism and understated practicality of taking one day at a time. While we were in the throes of pregnancy concerns, my husband comforted me with this wisdom: We cannot know what will happen next, so we will manage whatever it is when it is here.   I try to model for her how to grant ourselves grace in each moment and make the best decisions we can with the information we have at the time.   I am grateful that her symptoms are mild and we have so far been able to keep her brother safe. The hug tally is at 16 today, and I am ready to cash in when the time is right.

Deborah Edberg is a family physician.

Image credit: Shutterstock.com