He wants to talk about his seventh birthday an hour after bedtime when all is quiet and dark in his room, and we are supposed to be doing our evening ritual of snuggles and kisses and a song. I just want him to live through the night. He needs to talk about the fetti cake and all the ideas he has. “Can we go to a bowling alley?” turns into, “Can we fly on an airplane and then go to a bowling alley with the fetti cake and then go back to the airplane and fly home and then we can take a nap?” Now he’s asking about ice cream, to which I say of course, and if he can have two pieces of fetti cake and I also say of course, because birthday boys are spoiled in our family. We put a pin in the airplane idea and I give a solid yes on the bowling alley, ice cream, two pieces of fetti cake, and the nap. The last one makes me chuckle, the kid knows his limits. When he’s overtired he has seizures.
Born three months early, weighing two pounds, and suffering multiple brain injuries from the trauma, Zion was placed for adoption and left in a hospital NICU at the moment when he most needed a mother. I remember when I saw him for the first time—in an email with a photograph the size of a postage stamp showing his small brown frame in an incubator—and somehow I knew we belonged together.
Inside his bedroom all is quiet apart from our hushed chorus. The walls keep secret the things they’ve seen—a restless toddler on Christmas Eve bouncing around in footie pj’s asking if Santa is coming, a tired baby brought home in bandages after emergency brain surgery, a limp six-year-old body being given CPR by his mother as we call for emergency help. I breathe deep and thank God for normal nights. Normal is miraculous to us. We sing and cuddle and I tell him I love him with my whole heart. He wants to know how much longer until the fetti cake and I tell him four months. He seems elated. Then I tell him sixteen weeks and his smile droops, “Wait, Mama! You just said four.” I explain the difference between months and weeks but he can’t hear me. He’s just thinking about the cake.
A purple glow and hazy steam rise from the diffuser where we run water and essential oils to help him breathe easier through his rough asthma season. He calls it his “confuser” and he will not go to sleep until “my confuser” is running. He has always slept like a champ as long as we follow the rules of his broken brain—which requires order and sequence for things to be the same tonight as they were the last six hundred nights. So we do our dance and I feel his body start to uncoil, pressing its weight into my arms. The scent in the air is a mix of eucalyptus steam, little boy breath, and conditioner for black curls. I could drink it to the dregs.
I squeeze tight, tell him to sleep well, that I’ll see him in the morning first thing. He answers back in the sing-song of a child who has experienced unimaginable pain and yet has unfathomable joy. “Okay. Night night, Mama.”
I’m always relieved to see him down for the night, but equally relieved when he climbs into my bed in the morning with his oversized comforter and snug-fitting pajamas. He’s spent so many nights sleeping in a hospital gown that if the children’s hospital gave out punch cards, they’d owe us a month rent-free. Every night, I know there’s a chance he won’t wake up.
I close his door and walk down the hallway, instinctively clutching my chest with my right hand out of the sheer aching bliss of loving him. I’m a heart-grabber, I always have been. I’m that person who gets so touched by something excruciating and lovely I grab for my physical heart. I can’t tell why I do it. Maybe it’s in hopes it stays in there and doesn’t explode through my skin. Being the mother of a chronically ill child with brain injuries, ongoing seizures, cerebral palsy, and asthma has made my heart grabbing a regular occurrence. Turns out, there’s nothing like the threat of death to make you awake to life.
Heart-grabbing is different these days. My hand is met with bumpy cloth hiding a jumbled mess of electrodes, wires, and a heart monitor all tucked inside an oversized sports bra I bought just for the occasion. I’m on a continuous EKG heart monitor for the month. Somewhere out there, a stranger sits in a room staring at a computer screen watching every blip and beat of my body, every single minute of living and loving. I think about the faceless stranger seeing the change in pace as I’ve nestled into Zion and answered his birthday questions, falling in step with the beat of his sweet biscuit breath. I wonder what the stranger saw my heart do the last time Zion’s heart stopped, when I started CPR in the back of our minivan while my husband bulleted down the highway. Don’t take him, I pleaded to an invisible God under my breath as I gave compressions.
One of the electrode wires tangles around my index finger and I realize this monitor changes everything. I now walk up to the fence line where life and death meet, where Zion has been playing and catching fireflies since he was born. I now have to admit that someday, maybe sooner than I had hoped, I will either lose my life or its most sparkly companion.
When you get bad news about your heart and your baby’s life is perpetually at risk, copious amounts of fetti cake and airplane rides don’t seem like too much to ask. How can I say anything but yes to every possible adventure with this child while I still can?
My cardiologist disagrees. She tells me to slow down, reduce all stress, make life easier on myself so I’m not a thirty-something on a machine that tells her heart to beat, or worse. I decide I’ll get right on that, as soon as Zion stops having life-threatening seizures, as soon as I’m ready to trade living more for living longer, as soon as I make the fetti cake.
I close my door halfway for the night and turn on a baby monitor so I can hear Zion wheeze and peep; his lungs were born too soon so they fight for the air they need. I grab at the good hurt in my chest yet again. Every day of Zion’s life, all I’ve wanted is his survival. More than anything, I’ve wanted to see him make it through the night, make to the next birthday. I’ve said as much many times when feeling desperate and bargain-y with God or death or whoever is calling the shots behind the curtain. I’ve said I would give my life for him in a heartbeat. Maybe, that’s exactly what I am doing.
This afternoon we were swinging with our legs tangled together in a hammock, the weight of his body pressed into mine, erasing the hem of our light and dark skin, where I end and he begins. He has no idea about my heart condition. Apart from the monitor I have to wear, all in Zion’s world is exactly the same, but he is perceptive in strange and magical ways. So today, unprompted, he told me when he is an old man and I am dead, I will live in his heart. “That’s what happens to people when they die, mama,” he said. “They can come live in our hearts if we love them.” I held back tears and told him that sounded like the best plan, and I could think of nothing better than my little boy becoming an old man who’s still aware of my presence and love for him. I wonder what the stranger watching my heartbeat saw then.
I look at myself for a minute in our smudgy mirror, freckled and pale and covered in mechanical nonsense. Somewhere under all of it, my heart is dancing, beating, still working. I put my hand over the place where she lives and say a few quick and quiet thank yous as she beats and beats and beats for me, each pulse a gift. I tell her in a whisper that she’s remarkable. She’s fought through so much, but we’ve still got more to do here. Don’t take me.
The tricky thing about life is it can be heartbreaking to be here, even in the good stuff—especially because of the good stuff. Maybe that’s how it’s supposed to be. Maybe our hearts are meant to be used and used up, wrung out to the very last beat. Even our greatest loves have to end somewhere, surrendered to the ground or to ash carried away by the current. We practice using these hearts of ours with all the mettle we can muster and then we fall asleep. It’s like the lactic acid released after a good workout—if you’re sore the next day, you know you did a good job. The glory and the ache go hand-in-hand, they hold each other in the same hammock, forgetting where one ends and the other begins.
This love has been my “confuser,” healing and all-encompassing, taken in one breath at a time. And when the day comes to a close and I find myself grabbing for Zion. I know this life-saving presence we give each other is our mutual resuscitation. I lay there and scheme with him, answering questions about airplanes and naps, I hear him call me “Mama,” something that won’t last forever, and promise him tomorrow we will hold each other again, first thing. Then I lay in my bed next to the monitor and cry blissful, salty tears, worn out by this heart and this life, so grateful to be broken open by this adopted love. I knew the first time I saw him I would gladly spend the rest of my life carrying his squishy, wounded heart with me. And someday, according to him, he will carry mine.
Cover photo by Ash Parsons.