
An NYC Mama On Life With Twins (One With Cancer)
Written by Katie Hintz-Zambrano
Photography by Photographed by Kisha Bari
Delivering twins will throw any new mama through a loop. And then, nearly a year later, to get the devastating news that one of them has cancer…well, that’s a turbulent ride that no mother ever wants to find herself on. This was the reality of NYC-based musician Alexa Wilding a little over a year ago. Luckily, the story of Wilding and her identical twin boys, Lou and West, has a happy ending, with Lou being declared cancer-free after treatment. Here, the resilient mama invites us into her home to talk about what living through every parent’s worst nightmare has taught her.
- "Twins don’t run in either of our families, and I didn’t know they could be spontaneously conceived! My pregnancy was uneventful in that nothing bad happened, but super eventful in that carrying two huge babies to term was total slapstick. I could barely walk or laugh!"
- The cuties Lou (left) and West (right).
- "Nursing two babies was hands down the biggest challenge. It took two months, two lactation consultants, formula, and a lot of Type A tears before we were on a roll, and then I had the opposite problem—so much milk that I was 24/7 chained to either a baby or a pump, or sometimes both at the same time! I envied mothers with one baby, casually nursing on park benches, even though I’m sure they, too, had their challenges." Alexa wears a Stone Fox Bride Vintage dress, Laurel Patrick bracelet, and Lori McClean ring. Lou and West wear Ballet Beautiful Baby ballet slippers and clothing from Clementine Consignment.
- Wallpaper created by the twins' father, Ian Sullivan.
- "Holding both babies at the same time, what a rush! So much of those early days are now a milky haze, and much of it overshadowed by what came next, but I have such fond memories of the sheer endurance of it, furiously keeping track of the diapers and feedings in a notebook, lest we be totally lost."
- "Both boys were born, seemingly, in perfect health. They hadn’t even had a cold! Then, at around 10 months, Lou stopped nursing, while West was going strong. Lou couldn’t hold anything down and gradually became so irritable he was up every half hour at night. Days shy of the boys' first birthday, after many misdiagnoses and trips to the emergency room, I strapped him to my chest and ran to see a new pediatrician who trusted my intuition and took immediate action."
- "I don’t remember much about the day we learned Lou had a brain tumor. Like most traumatic events, you remember the little things, like, I was supposed to play a show that night and lend the headliner my guitar, how would I get the guitar to Brooklyn? I went through all the bad things I could have possibly done, surely this was some sort of payback, but I had no memory, somehow one foot went in front of the other and we got to the emergency room."
- "I felt like I had stepped through a portal into a new dimension. The surgeon told us Lou had a brain tumor that was about to burst. The illusion that all of us mothers' hold, that we can protect our children from anything, was shattered. Even my magical thinking, or crazy superstitious thinking, that I must have caused it, I should be able to prevent it, slipped away. While losing this illusion broke my heart, it also set me free, for which I will always be grateful."
- A familiar train-takeover scene for so many mamas out there.
- "At first, Lou was diagnosed with a super rare benign brain tumor that only affects a handful of children a year. Our surgeon assured us that the chances of it being malignant were like getting struck by lightning. So, we saw Lou through complicated but successful neurosurgery, only to be told, weeks later, that they had been mistaken, we had been struck by lightning. While the tumor has been completely removed, and Lou was technically cancer free, it was recommended that he undergo six rounds of high-dose chemotherapy, and thus began Part Two of our little hero’s journey."
- "Within a week or so we started treatment at NYU. I had never been around cancer, I didn’t understand the complexities of chemo and how, despite its magical properties, treatment itself is something to survive. Keeping a child with no immune system infection-free during flu season was an unreal challenge. My hands got so raw from all the hand washing; they were the giveaway that, despite my smiles, I was hurting."
- I spy with my little eye...
- "It was tough, as half the month Lou was inpatient, so my husband and I traded off nights, so that someone was always home with West. Our family and friends were superheroes, organizing months of meals and raising funds via social media to cover full-time childcare and other expenses. They made the balancing act possible. It took a village!"
- Alexa and Ian's bedroom.
- Tools of the trade.
- "We had two priorities: Being there for Lou and making sure that West always had a parent home in time for dinner. The blessing in disguise is that we got to know our boys as individuals, spending 1-on-1 time we never would have spent otherwise. Even though it was the worst of times, my nights rocking Lou to sleep by the light of the pink Himalayan salt lamp in Room 934 are as precious to me as my nights home alone with West, sleeping on the shag rug by his crib just to maximize my time near him." Alexa wears a Stone Fox Bride Vintage dress. Lou and West wear vintage Chinese pajamas and Ballet Beautiful Baby ballet slippers.
- "I met Maria, a fellow twin mom, whose son was also in treatment, and even though we came from completely different worlds and knew nothing about the other, we became fast friends. At night, after our boys were asleep, we would meet in the hallway at the hospital for 'cocktail hour,' laughing and slowly opening up about our fears. Turns out we both liked crystals and had a naughty sense of humor! Mothers, no matter their circumstances, need to stick together. Maria is my war buddy and soul sister for life, and I love her boys as I love my own."
- Little survivor.
- "No gesture is too big or too small, and often the biggest help will be behind the scenes. I had one pal who texted me every morning just to see how I slept, while another was able to handle gowning up and seeing Lou through a bad bout of sickness. Friends with high profiles used their celebrity to raise funds, while another made meals every Thursday night for eight months straight. Be honest about what you can do and commit to it 100%. I promise every bit of love will be soaked in."
- "Practice extreme self-care. All mothers should, no matter what the circumstances, but especially during a marathon such as cancer treatment. I treated myself like an athlete. I ate the best food I could and slept any second I could grab. I popped Wellness Formula like candy, downed green juice every morning, got regular acupuncture, surrendered my natural ideals and filled a prescription for anti-anxiety medication, the list goes on. This is the time to pull out all the stops so you can best be there for your family."
- Alexa's living room.
- "Diagnosis to end of treatment was eight months. We are now over a year cancer-free (post-surgery) and eight months out of treatment. Lou remains cancer-free and his prognosis is excellent, as the tumor was not genetic and all of it was extracted. That said, I have moments where I have to go back to the original study, to make sure I read the numbers right, that they are closer to 100 than 0. We do routine scans every few months and the hours leading up to the results would crack the most committed Buddhist! But with every clean scan we grow more confident that everything is going to be okay."
- "That last day I walked Lou to the emergency room, when I still didn’t know what was wrong, I felt connected to every mother that had ever lived. That feeling has stayed with me. Motherhood is love. It is death of the ego (not your amigo!) and it is to surrender to God, whatever form he/she takes for you. Personally for me, that higher power is nature. We are all living things growing and changing and malfunctioning, etc. We are one. So, while, yes, my heart was broken, I feel lucky that I get to wear such a messy organ on my sleeve and be a part of such a wild world."
- Pictures of Lou as he underwent chemo.
- "We chose our battles! As long as everyone is healthy, well fed, with a roof over head, we have nothing to complain about. That said, we are constantly checking ourselves. The boys recently had a stomach bug and Ian and I were moaning about being up a few times in the night, changing soiled sheets, the works. I stopped myself, marveled at what a pro I am at changing linens, and winked up at the sky, as to say, 'I know, this is nothing!’" Alexa wears an Albertine skirt, CorellCorell vest, and Aesa necklace. Lou and West wear Ballet Beautiful Baby ballet slippers and clothing from Clementine Consignment.
- Sweater weather.
- #shelfie.
- "Ian [Sullivan] is an exhibition designer, overseeing the design and installation of exhibitions all over the world. He also designs children’s wallpaper, a business we will be launching soon, in the mean time take a sneak peak at the tree fort print in the boys room! I’m a singer-songwriter, performer, and a writer."
- Dino pile-up.
- "The first few months Lou was in treatment I sat in the dark after he went to sleep, unable to carve space for myself. Then one night in January, the songs came spilling out on a toy piano we borrowed from Child Life. I called my producer and slowly, between chemo cycles, when his counts were up, we recorded my new album. I also began writing a memoir. I never would have thought such a horrible crisis would have put me into focus as an artist, but it did. Working got me through it, and I learned to take care of my work as I did my children."
- "We were so isolated during treatment that the boys didn’t have much experience with other kids, besides our sweet neighbor, Eva. So, it has just been heavenly taking them to birthday parties and doing all of the normal things we were not able to do until now. I am excited by the every day, the tantrums, the naps, the walks, bed-time stories, just all of it."
- "I worry that I’m not enough. As a twin mother, I am always worried that one child isn’t getting as much love as the other, even though I love them both equally. Ian, a total saint, has to reassure me daily that I am a good mother."
- "By the morning we are all in bed together. We like to hang out in bed, pull angel oracle cards for the day, and snack on rice cakes and chat. Our favorite weekend outing is to trek down to Bleeker Street Playground, where I played as a child. It is the best playground in the entire world! Often Ian and I will let the boys nap in their strollers so we can grab coffees and walk the Village together, as we never get out together during the day. Evenings my mother, father, or my sister usually drop by, and bedtime is often an extended family affair. After the boys are asleep I do my stretches on the rug by their cribs, give thanks, and do Reiki healing on us all."
- "We live in the middle of Manhattan in close proximity to Central Park, which is a godsend! Having grown up here, I have a very romantic love for New York. I think it makes brave people who aren’t afraid to chase their dreams. That said, hauling a double stroller onto subways and through throngs of tourists gave me three hernias!"
- "We spent most of the summer trying to figure out how to move to Hudson, NY. My mother lives there and the community really took us in, fresh out of treatment, it was a healing place to learn how to be a family again. I went to Bard College, so the area is familiar to me, and the boys really blossomed out in nature. We are not ruling it out!"
- "My new album, Wolves, will be coming out in 2016, and I am so excited to start performing again. I am also currently an MFA student in creative writing at The Writer’s Foundry at St. Joseph’s College in Fort Greene, Brooklyn, where I am working on my book. It tells the story of Lou's treatment alongside my memories of life on the road. Mostly, it is a story about finding the meaning of love. Personally, I am studying Reiki with my friend and teacher, Erika Spring, and I am hoping to start sharing that part of myself soon, too. So much to do!”
- For more on Alexa and her family’s journey, check out her Instagram feed here.
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