Audra Sky Firestone was born on November 19, 2021 at 10:55am, the morning of a lunar eclipse, in an emergency C-section at 26 weeks gestation. From the beginning she contended with multiple severe physical limitations, but these limitations, as grave as they were, did not limit her ability to love and be loved, nor did they limit her ability to touch and transform hundreds of lives. Her spirit simply could not be confined. This is not the story of a life cut tragically short, but rather the story of a full, beautiful life that happens have been a short one. Audra did what she came here to do.
As you read the story of her 19 months here with us, I invite you to hear it from that perspective, to see her as Ezra and I do.
As her mother, our nervous systems were connected. The hardest part about her birth was being so abruptly separated from her. It was hyper-medical. So much choice was taken from me. I couldn’t see her or touch her. My arms were strapped to the surgical table like a prisoner. The didn’t lay her on my body, not for even a second.
But as she was born I sang to her, softly, sending the vibration of my voice through my half-anesthetized body. I started when they were giving me the epidural. The anesthesiologist noticed and asked me, “are you praying?” Yes, I said.
As they cut Audra out of me I had a vision of a circle of hands all around us, bathed in golden light. I heard her one kitten-like cry before they intubated her, and caught half a glimpse of her tiny red body out of the corner of my eye as they rushed her out to the NICU. Ezra saw all of her birth in the reflection of the surgical lamps, as he cradled my head in his hands.
Little did I know, it would be a month before I held Audra for the first time. She was deemed too fragile for that most primal human experience. Eight hours after she was born I was cleared to leave my room and Ezra wheeled me over to see our baby girl for the first time. Her tiny pink jelly bean body was wrapped in a plastic bubble suit meant to keep her warm. Her unimaginably small hands were up on either side of her head, her eyes were closed, sleeping, and most of the rest of her face was obscured by the breathing tube that was keeping her alive, but when I saw her perfect little button nose I knew she was unmistakably mine. I was hit with a tsunami of emotion — immense, feral, boundless love coupled with grief and terror.
To have a baby in the NICU is to simultaneously navigate the primal tsunami of emotion that is motherhood, and the hyper-logical, sterile world of neonatal medicine. It is to be torn between two opposing ways of knowing, seeing, feeling — both valid, both vital to keeping your baby alive. That impossible tension of opposites was in the air Audra breathed through her ventilator tubing, in the milk I pumped for her, in the cacophony of beeping alarms mixed with my songs and Ezra’s pep talks filtering in through the plastic walls of her isolette. It almost killed her, and it also made her strong.
On December 5, 2021 — the 14th anniversary of our first date — Audra was transferred to Westchester Medical Center for a surgery to close a hole in her heart. A special transport team came to meet us at her bedside. There was worry in the doctor’s eyes as she talked me through the transfer. It took 4 hours just to stabilize her enough to get into the ambulance. The illusion that she would just grow and get better and come home shattered.
Audra almost died in that ambulance, but somehow she pulled through, and we began a strange new chapter of life with her in Westchester. New faces, new routines, new ideas about what our little girl needed to thrive. The heart surgery helped, but not as much as we had hoped. She was just so sick. Through the door in the isolette I could touch her, but every cell of my being ached to hold her. Finally, her doctor took pity on me. It took a carefully orchestrated four person operation to get this sub-two pound itsy-bitsy baby onto my chest. I wore a flannel button-down so I could cradle her bony baby bird body against my skin. Her miniature hand rested just below my collar bone. My heart melted into a river of love and we stayed there for 15 blissful minutes before she decompensated and had to go back into her little plastic box. It would be another month before I could hold her again.
In the course of that month, Audra almost died several times. She got so swollen with edema that the doctors began talking about discontinuing care, but Jake came to pray over her with his eagle feather and she made a drastic recovery. She wanted to be here. She wasn’t done yet. He also gave her a Navajo name, which means Warrior Woman Who Seeks the Rainbow.
When you spend as much time in the NICU as we did, you get to know the staff pretty well. Due to the pandemic restrictions, other than Ezra and Jake, the NICU folks were the only people who had even met Audra. In the early awful days, I would sit for hours next to Audra’s isolette in the room where all the sickest babies stayed. I was heartbroken, hormonal, depressed, and depleted. Nikki and Casey were assigned to Audra a lot in those days, and their kindness pierced the thick fog of gloom surrounding me. Nikki and I shared pictures of our cats. Casey’s confidence and unsinkable cheeriness gave me hope. Most importantly, they both loved Audra. They had as much fun as was possible to have with a very sick intubated micro-preemie in an isolette. They were sweet to me. Encouraging. They made me feel less alone. I soon got to know the other nurses and RTs, too. The more I got to know them, the better I felt about Audra being there. Audra had friends, and that meant everything to us.
As soon as she was stable enough, I held her as much as possible, which was about 4 hours a day. She was the poster baby for kangaroo care. When she was on me her heart rate dropped and her oxygen saturation went up. It was good for me too. We are meant to be with our babies, after all. I finally got to nuzzle her fuzzy little head and (if the right nurse was in the room) lift my mask and smell her intoxicating baby sweetness. We settled into a daily routine centered around getting me to the hospital to snuggle Audra. The weeks turned to months, but Audra was seemingly no closer to being ready to come home.
Audra’s tracheostomy was the turning point. It gave her a stable airway that allowed me to hold her as much as I wanted. We could see her pretty rosebud lips for the first time unobstructed. She discovered pacifiers! She got moved to a coveted crib next to one of the NICU’s 4 windows and I started spending even longer hours there — holding her all day, every day. I’d send Ezra selfies of Audra tucked into my sweater with the text: “meet me out back in 5.” He’d reply: “Back door in 5. I’ll be there!”
Around this time, Dr. Dennis Davidson took a special interest in Audra’s case and put us on the short list for a bed down the road at Blythedale Children’s Hospital, where he is the head doctor. After six grueling months were were headed to rehab! The NICU rolled out a literal red carpet for us and lined up along it to blow bubbles, wish us well and send us on our way, serenading us with “Over the Rainbow.” Audra rolled along in her little plastic isolette, eyes wide, sucking on a binky.
At Blythedale Ezra and I could finally be with Audra together. Our families could meet her. There was a single pullout bed in Audra’s room, so I moved in. Expecting a six month stay, I got comfy. I had a sheepskin rug, mood lighting, a potted plant. If Audra could not come home, I would bring home to Audra. It was hard and I didn’t sleep much, but it was the happiest I had been since she was born. I lived with my daughter. I got to know her rhythms. Every morning when she blinked her eyes open I was there. Every night when she went to sleep I was there. I finally felt like a real mom.
Just when we had gotten settled, Audra’s health started crashing. After a short stint back at the NICU, Dr. D. sent us to CHOP, for specialized care in their Chronic Lung Disease department. We packed up and moved to Philly.
I could continue to tell you the story of Audra’s life in a series of medical anecdotes, but to do that would be to miss the bigger picture. Audra touched so many hearts not because she was so sick but because in spite of her many ailments she emanated love, sweetness, joy, and strength. She was funny. She was powerful. She brought us to our knees again and again to kneel at the altar of what really matters: love.
Being Audra’s mom made me face the worst in myself. It shook me to my core and pressed my nose up against every demon lurking in the dark corners of my psyche. I writhed and raged and disintegrated, and learned to accept help from Ezra, our families, our friends. Being Audra’s mom made me face the best in myself, too. To find my strength and resilience and to surrender to love. She offered me the opportunity to commit to enjoying life, no excuses, no matter what, and eventually I took it.
It helped immensely that Ezra was already on that track. I cannot overstate the depth of his love and commitment. He was unwavering in his perception that Audra’s life, difficult and harrowing as it was, was also perfect. He wrapped his arms around the chaos of it all and held us close. He was patient with me, until I could see her perfection too.
Our time in Philly was a rollercoaster of tests, procedures, and eventually the surgery that both helped Audra grow and revealed the cancer that was growing on her liver. It also brought a guardian angel named Élan into Audra’s life in real way. Élan and Dana had moved across the country from Oregon in March to support our family and had become a vital part of our care team, but due to an ill-timed bout of COVID, Élan had barely spent any time with Audra yet. At CHOP, it was love at first snuggle. Elan spent three days a week with us, fully immersed in our NICU life.
Her presence meant that I could take a a break. She was gentle and intuitive with Audra, and comfortable with the complexities of the hospital environment. Audra felt safe and happy with her, and I did too. She explained her and Dana’s support roles with the image of concentric circles. Audra was the center, with me as the first circle holding her, then Ezra holding both of us, then Elan holding the three of us, then Dana back on the home front, holding Elan and all of us, even Sophie.
We found our rhythm and soon we were thick as thieves — laughing, joking, and partying our way through the summer. Audra benefitted from the stability our trio brought into her world. During the day she was never alone. We mastered trach care, then trach changes together. We were a good team. Our foundation was solid, and it needed to be to absorb the shock of what was to come.
Ezra’s mom, Ilana, was with me when the doctor stopped by Audra’s room and casually dropped the bomb that shattered our world. Severe Cerebral Palsy. Cortical Visual Impairment. A life of profound disability. Cancer.
The day after her diagnosis, Audra smiled for the first time. Ezra was holding her in his lap, playing with a bright orange ball. He tossed it into the air and let it land softly on Audra’s lap. She thought it was hilarious. “Honey, look, she’s smiling!” he called out to me. There she was, positively beaming, the sweetest little dimpled grin lighting up her face. Her eyes sparkled. We laughed, we cried, we marveled at the miracle of our little girl. When we listened with our hearts, we heard her saying, “It’s going to be ok. Let’s get outta here. Let’s go home.”
Audra’s cancer diagnosis was not another tragic twist in a story of pain and loss. It was a call to presence. A warning: you don’t have much time, better make it count. It no longer mattered if she was blind or disabled. It only mattered that she experienced the best life possible for however long she was here.
Once made our decision not to treat Audra’s cancer, we were on the fast track to go home. Back at Blythedale, we spent a little under a month learning and demonstrating all the necessary skills to handle all aspects of Audra’s care on our own. We had been warned that finding nursing where we live would be nearly impossible, so we took matters into our own hands and put the word out to our friends and community. Thus, Team Audra was born!
To Nikki, Kayla, Meghan, Lexy, Emily, Ben, Eva, Jill, Deirdre, Nicki, Celeste, Matt, Noam, Stephanie, Nati, Ryan, Kasia, Jenna, Brooklynn, and of course Adam, Dana and Élan, thank you from the bottom of our hearts. Thank you for every syringe washed, every diaper changed, and every night we could sleep because you were awake. Thank you for the tenderness with which you cared for our precious girl. Thank you to everyone who made the time to show up regularly to support us in other ways and become a part of Audra’s life. We had no choice but to go on this ride with Audra. She is our baby. But you had a choice. You didn’t have to open your heart so fully to her, but you did it anyway, knowing that loving her also would mean losing her. It is because of you that we were able to bring Audra home, and having her here with us has been the greatest gift of our lives.
We brought her home knowing our time with her would be short. Months to a year is what the oncologist had said when we pressed for a prognosis. It’s funny how time expands and contracts. The months in the hospital had felt so long, so interminable, but suddenly time sped up as though the limit on the number of her days also made each one shorter. Audra was home for seven and a half glorious months. We savored each day. Time flew by.
Audra blossomed here. Overnight her oxygen requirements dropped by half. She thrived in the consistency and calm. We took her on her first walk outside, to the Unicorn. We showered her in affection day and night. We celebrated her 1st birthday with friends and godfamily. All the holidays that had been so horrible in the hospital became extra joyful.
She was eager to have fun: a truly happy baby. We could reliably make her smile by making a surprised “huh” sound, if we combined them with rapsberries - “Huh! Pbthhh! Huh!” she would giggle, too, sometimes setting off her alarms from laughing so hard.
She discovered that rather than falling asleep for the night in her crib, we could rock her to sleep in our arms. Bedtime became a sweet ritual that always ended with a highly choreographed transfer back to the crib. We would celebrate each other’s successful transfers by raising our arms in celebration when whoever had done bedtime walked out to the living room with the monitor.
Audra’s relationship with Ezra deepened. Every morning his first stop was to come chomp on her cheeks as I held her in the pink chair. She would giggle in delight and grab his beard with her little fingers. In true dad fashion, he introduced her to roughhousing. Her favorite game, “Trust Fall,” involved him sitting her up and then letting her fall backward into his hands or onto a pillow. She thought it was hilarious, grinning ear to ear as her shoulders shook with laughter. Weekend mornings were their special time together. I loved waking up to find them snoozing together in the pink chair, Audra happy and secure in her daddy’s arms.
Our families came from out of town. Free from the stringent visitor policies, we could finally all be together with her. My dad had been diagnosed with brain cancer a few days before Audra came home from the hospital, but thanks to the herculean efforts of my mom and uncle, even he was able to come and see her here.
Audra attracted a constant stream of friends and visitors, and we joked that she was like a little buddha or guru, with pilgrims traveling from near and far to kiss her little baby feet. She loved the attention, and was happy to be passed from lap to lap, soaking up all of the love and making us laugh with her funny little faces and cross-eyed smiles. She got to know children, too: her godsister River, her baby bestie Magnolia, her valentine Bruno, Serenity, Desmond, her godbrother Judah, Emet, Jack, Junie, Malcom, Zoey.
Audra developed special relationships with each of her caretakers. She responded to their different songs and sounds and games. Her beloved Élan said, ba ba ba, and held her extra close. Dana sang her mantras. Days with Emily and Ben meant movement and beautiful music. Jill made bird whistles. Eva days were filled with sweet melodies on the calimba, Celeste days with Moon Dance songs, mornings with Adam with classic rock. If Nikki and Kayla were here, some sort of surprise was likely in the works, like a fingerprinting masterpiece, and at least a couple FaceTime calls to see her friends in the NICU. Nights brought hours of butt pats and binky holding with Lexy, tipi songs with Matt and Noam, midnight snuggles with Nicki, and of course sweet sunrise snuggles with Meghan who always told her, “I love you as big as the sky.”
One of the strongest testaments to the good life that Audra lived here at home was the peace and beauty of her passing, on her terms, in her way, surrounded by love. We had felt her declining more sharply for a couple weeks, and the energy in the house was heightened, aware. We canceled all possible commitments in order to have more time with our precious girl. Ezra started waking up early to spend extra time with us in the morning before work. We called Ezra’s parents to come. Eva, Cashion, and River, Audra’s godfamily came to stay with us, too.
The day before she died, a circle of women (and Ben) came to sing to her, as they had often done, filling the room with angelic harmonies. When she had a hard time sleeping that evening, I chose to hold her through all through the night. I’m so glad I did, because that was the last time she was awake. Her belly had gotten so big and full with the tumor; she was exhausted. She needed morphine.
Toward the end, she was most comfortable snuggled up into my chest facing me, the way we were for those countless hours of kangaroo care in the NICU. A return to her first comfort. I held her close, breathed her in, and told her it was okay for her to go. I promised her Ezra and I would be okay, and that we would be here with her whenever she was ready.
Early the next morning Audra’s vitals dropped, but then recovered, a little hint at what was to come. Ezra and I spent a final beautiful, peaceful morning holding our baby girl. Eva came to sit with us for a while, and then after Elan arrived and we checked in with hospice we sent word that it was the day to come and say goodbye. We expected that people pass through pretty quickly, but instead each person who arrived came up for their moment with Audra and then quietly took a seat in the space in what was to become the ceremony of her death, even 4 1/2 year old River.
Audra slept peacefully in my arms through the procession of goodbyes. She fluttered her eyes briefly when the music started in what felt like a gesture of approval. Songs were shared, tears were shed, and an ethereal stillness floated in the air. There was a pause, and then a prayer, and then more music. All of the instruments joined in. I felt a shift in Audra. Elan and I looked at each other. We could see her vitals fluctuating, dropping. She turned off the monitor. Audra lifted her hand as if to wave goodbye, and her chest lifted ever so slightly. She made couple little faces and I lifted her to my heart. Ezra held both of us, and beyond him, Elan held all of us. Audra’s spirit left her body peacefully, gracefully, cradled in our arms, in her own perfect timing, surrounded by those who loved her. A circle of hands. My vision from her birth realized.
Elan turned off the ventilator. There was silence. Then we wept, and the circle echoed our weeping back to us. We removed Audra’s equipment, piece by piece. The ventilator tubing, the pulse ox, the trach, the g-tube. For the first time we saw her body free, unencumbered by the tubes and wires that kept her tethered here.
I held her for a long time. Each person came back up to say goodbye to her body before giving us some alone time. Ezra held her for a while, then Elan, then Nikki and Kayla. As the sun set we washed her body with milk and rose petals. We sang to her, wept over her body, swaddled her, and placed her in her crib one last time.
In the morning we dressed her and placed her casket on a soft down pillow covered in her favorite blanket. She wore a dress my mom made, that my two sisters and I all wore and a silver and turquoise bracelet her Auntie Em made for her. We surrounded her with beautiful, meaningful gifts given to her by the people she loved. She looked beautiful, like a tiny queen. Her mourners cycled through a few at a time to say goodbye one last time, and then we closed her casket and walked in a procession of rose petals, cedar smoke, and song to her gravesite.
Jill led a beautiful, simple ceremony, and we placed her in the ground. None of us had ever done this before, and yet we all knew exactly what to do. We sang as we filled her grave ourselves. A gentle rain fell. When we laid flowers on the mound of earth holding her, River took a single sunflower and planted it in the ground, it’s golden face pointing skyward. We shared a meal and sat around the fire singing late into the night.
Death, like birth, has been largely removed from our homes, but there is power and beauty in bringing it back into our own hands when possible. People have been dying for as long as we have been living. We are capable of handling it and integrating it, even when it is hard. Even when it is early. It is healing to be with a body after the spirit has left, to grieve, to weep, to hold and be held. Audra’s death was a healing, not only because she is no longer suffering, but because she died peacefully, gracefully, and undisturbed. There was a magical quality to it, the way everything just fell quietly into place. Audra was generous in life, giving us time to really know her. She was generous in her passing too, giving us time to say goodbye, and the opportunity to reframe our relationship to death itself around the beauty of hers.
The true gift of love is found in the giving of it. Audra gave us an excuse to give love fully and freely. Instead of using her death as a reason to lose, let’s use her life as a reason to love even more. We are the lucky ones. We got to know her, to hold her, to be close to her, to have our lives transformed by her presence in it. If she touched your life in any way, let that be a catalyst for good. Let that be her legacy. When you feel your heart breaking, rather than trying to hold it together, let it be broken wide open, and let that openness increase your capacity for love.