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first person

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Illustration by Rachel Wada

I often dream of Athena. Most often they are snippets. Her terrified parents in the delivery room. At 25 weeks, still too early to have attended even the first session of childbirth classes. Totally unprepared for a much-too-early, life-giving process that was crunched into a few short hours.

I was there to see my first grandchild, Athena, born at 950 grams: so tiny, with translucent skin, covered in downy hair, whisked into an incubator and away to the NICU. It was weeks before she could be held by her parents. Until then they had to be satisfied with gazing at her and talking to her through the thick plastic. In the meantime, her eyes were shielded from light by thick pads, her body wrapped in a plastic film to preserve body heat. Monitors and tubes were everywhere.

I dream of the heart surgery. At three weeks of age, transported by ambulance two hours to a children’s hospital where a specialist waited, cutting into her tiny body to repair her heart, the size of my thumbnail. Of blood transfusions and beeping monitors. To keep her heart beating so she could fight and grow.

I dream of her brave mother, who pumped breast milk for almost 10 months, carefully freezing the little containers so it could nourish small life. Of the hospital call coming for more milk, loading a filled cooler into the car and delivering it to an ICU two hours away.

I dream of infections that sidelined everything and almost took Athena’s life. Of CPR on such a little body. Of my son telling me how hard it is to think your child is going to die. Four times. My mothering instinct jumped into action – four times; even one time is too many. I wanted to spare him the heartache but there was nothing I could do but cook meals, do laundry, take shifts in the hospital room, hug and hold.

There is nothing “simple” about a cold for a little one with such a compromised respiratory system. A cold means a dramatic drop in breathing ability and admission to the ICU. As Athena grows, she is getting stronger: we all cheered when recent sniffles just meant a stay at home not the hospital.

It was 541 days before Athena was released from the hospital. For 18 months there was not a single day of “normal” for this little family of three. Christmas, birthdays, special occasions all happened in her hospital room.

Even once she was home there were machines – only recently gone – that beeped and sounded alarms and needed to be monitored. We all learned to play our parts in her care. For me that included taking turns to cover many overnight shifts; staying awake through the night to monitor the pulse oximeter, to jump up at alarms, to listen for her breathing. Then I’d head home in the morning, sleep for a few hours and start my regular workday.

Last night my dream was of such a machine. The trauma of the delivery room, pumping milk and feeding, cutting into and stitching a tiny heart, rebuilding a damaged breathing airway, countless hours in an ICU willing her to breathe and grow. I dreamed of orchestrating all the moving parts at one time – of seeing them spread out before me when I could push a button and watch as all my heroes were together at once, ever so slowly nudging Athena toward health.

The isolation and social distancing of the pandemic were not new for Athena’s family. For the first four years of her life there were limitations: no playgroups, no daycare, no friend dates, no interactions in settings or with others where germs could possibly skulk. She needed young friends but instead she got a team of loving, dedicated grown-ups. She has survived and thrived – and taught us all so much about community and caring. When a friend started a GoFundMe page to help with the ongoing therapies, it was a window into our loving community. We cannot say thank you enough.

We are not there yet. But we are closer than we have ever been. This little girl radiates joy and hope and purity that are almost tangible. She is a survivor. She is also a teacher – she has taught us all about patience, optimism, working together and believing. We follow her lead. Her pediatrician calls her “a miracle child.” Her prospects are very good.

“There is something special about extreme preemies that survive,” a social worker friend tells me. “There is a wisdom in their eyes, a calmness in their character that tells you they have been through the storm and they survived.”

There is an inspirational saying that fits Athena perfectly: Fate whispers to the warrior, “You cannot withstand the storm.” The warrior whispers back, “I am the storm.”

We call Athena the Warrior. She is the storm. She is wise and strong and powerful. She is love. A beautiful little girl who has shown us all there is nothing that can defeat her. This is the lesson she has given us all.

Josephine Matyas lives in Kingston

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