‘As I sat alone in the NICU, postpartum body aching, one thought rose to the top of my mind: ‘You are exactly who our family needs.’: Mom navigates son’s Down syndrome diagnosis, multiple heart defects

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“As I sat alone in the NICU, holding my perfect baby, postpartum body aching, mind swirling with new information, one thought rose to the top of my mind: ‘You are exactly who our family needs.’ I whispered this to him again and again and kissed his tiny little head. I have whispered those words to him countless times since—through tears and smiles, surgeries and miracles, at appointments and home.

Mom holds newborn son in the hospital
Courtesy of Mallory Judkins

My son entered the world at the beginning of the COVID-19 pandemic, which brought its share of challenges. Our family was living in a new state, my husband had just started a new job, and the world was fighting a new pandemic. He arrived quickly, after just ten minutes of pushing. He started to nurse right away and my husband and I were savoring those first few precious moments with our baby. For a moment, life was calm and simple. But every now and then, life hands you an opportunity to refocus on what really matters.

One of those refocusing moments came on a Wednesday when my son was two days old. My husband and I had received our son’s Down syndrome diagnosis the day before, and after an echocardiogram that morning, had just spoken to a cardiologist from a nearby children’s hospital. She told us our son had multiple heart defects and needed to be cared for in a higher level NICU. We had an hour before emergency transport arrived.

Mom looks down at newborn son with health complications while holding him in the hospital
Courtesy of Mallory Judkins

My baby had just been wheeled away in an incubator on a stretcher. He was surrounded by monitors and machines. Voice breaking, I made the ambulance driver promise to take care of my baby as he drove. I squeezed my son’s hand through the incubator and covered him in all the loving words I could. We weren’t allowed to ride with him, and were told to meet him at the hospital once he was settled.

Left alone in my hospital room, my husband and I started to pray. I cried and pleaded with God to take care of my baby, to protect him. I asked God to help my son feel our love for him, especially when we weren’t able to be there right next to him. We prayed for the transport team, for the doctors and nurses who would be receiving him at the hospital, and for everyone else who would be interacting with him. Even in our fear and grief, my husband and I started to sense this would be an important chapter in our family’s story.

Couple smile big and hug during family photos
R. Hope Photography

That day was the first of many humbling moments where I placed my son into the capable hands of medical professionals. His doctors, surgeons, nurses, therapists, and other hospital staff will always have my heartfelt gratitude and love. I hope some of them see this and know how much they mean to our family.

One of the biggest miracles of our stay was how we were immediately enveloped in community. I kept a detailed journal of our ninety-six days in the hospital and each day I wrote about tender mercies I saw. Some were little things that made me smile, like his nurse texting me a cute photo of him in his swing after I left for the day. Many were thoughtful gestures, like the cardiac surgeon’s gift of a small statue of a boy holding a golden heart given to us the morning of my son’s surgery. One of the housekeepers gave him a nickname and told us he was on her prayer list, and ‘once you’re on the list, you’re on for life!’

Mom crouches down next to her son with Down syndrome in a wagon
Courtesy of Mallory Judkins

I found an online community filled with moms of children with Down syndrome whose lives were full and rich. I found organizations that provide bags and baskets and care packages to families grappling with a new diagnosis. I cried as I watched videos of young adults with Down syndrome receive scholarship checks to pursue further education and training. I found adults with Down syndrome who are living extraordinary and happy lives. I met local moms whose children are just a little older than my son, and their experiences are invaluable.

That’s not to say everything about our experience has been perfect. It would be inauthentic to imply this road is easy. My husband and I have had days that seemed too much to bear. The days immediately before and after my son’s cardiac surgery were especially difficult. It was no secret it was going to be a complex surgery, and even now, thinking about riding with him in the elevator down to the operating room floor makes my stomach sink.

Special needs mom takes a selfie with her son with Down syndrome while at the doctor
Courtesy of Mallory Judkins

I felt taunted by my son’s empty crib at home, and struggled to answer my toddler’s questions about when his baby brother would come home. People have made insensitive comments to me about Down syndrome and I struggle knowing whether to advocate and fight for him, or just let it go. I know there will be challenges in the future, and I worry others won’t be able to see his light the way I do.

During those hard days I try to lean into the lessons I have learned. I try to think about how our shared experiences have both softened and strengthened me. I think about how my priorities have shifted, and how I now view others with a little extra love and compassion. I look into my son’s beautiful almond-shaped eyes that are the same color as mine and whisper, ‘You are exactly who our family needs.’ I have found an inner strength I didn’t know existed. I am proud of who I am becoming and what I have learned. I am learning to give myself compassion and permission to experience all the emotions that accompany raising a child with a disability.

Couple take photo together on the day they brought their baby home from the NICU
Courtesy of Mallory Judkins

A few months after my son came home, I was talking to a few friends and expressed sadness that life wasn’t ‘normal.’ Our weeks were full of appointments and therapies and I missed the days full of snuggling on the couch I had enjoyed when my first son was born. Food sensitivities had recently necessitated a permanent switch to a specialty formula. I wasn’t sad he was going to need formula—I was grateful science had given us the option—but felt like the last bit of ‘normal’ was being taken away.

There were so many typical experiences we hadn’t had, and the ability to pump and give him breastmilk through his feeding tube was something I cherished. My friend said, ‘I don’t know when, but I know you are going to have a moment soon when you’ll sit back and realize everything is normal. It will be a different normal than you might have envisioned, but it will be your normal and it will be so beautiful.’

That moment came a few weeks later. We had just finished an appointment at the medical offices when we saw some familiar faces. There is nothing ‘normal’ about standing outside a children’s hospital feeling at home talking with two pediatric cardiologists who love your child. It’s not ‘normal’ to discuss traveling to higher elevation and pulse oxygen numbers like some people discuss last week’s game and the weather. It’s not ‘normal’ to ask them to say hello to all our friends in the ICU. But it was our normal, and it felt so good.

Mom holds her son with Down syndrome outside while he laughs
Courtesy of Mallory Judkins

As I think about my family’s life now, I feel an overwhelming sense of gratitude. My son has a dream team of therapists who support him and our family. We have a large medical team of specialists who love him and take care of him so well. Our local Down syndrome association is like family. My son has opened us up to a world of people who we wouldn’t have ever met, and we are better because of those relationships. During a conversation with my parents early on, my dad said we would learn things we wouldn’t have been able to learn any other way. I feel like life has given me a gift through this experience.

I am able to love better now. I am a better mother, advocate, sister, daughter, aunt, educator, and friend. Because of my son, I am starting a Master’s degree in Early Childhood Special Education. I want to help other parents see a disability is just one detail about their child, and encourage them as they navigate the first few years of their child’s life. We need each other, and life is much richer when we can learn from others’ experience.

Mom of two sons smiles for a photo with orange flowers
Courtesy of Mallory Judkins

Heather Avis—a fellow ‘lucky mom’—wrote a book recently I haven’t stopped thinking about since the first time I opened it. Different: A Great Thing to Be! is about a little girl who teaches others about the beauty of difference. Every time I read it to my boys, my conviction to its core idea grows stronger. It grows every time I meet another child with a disability, every time I get an uncomfortable look or comment from a stranger, every time my son meets a therapy goal, every time my older son talks proudly about chromosomes and Down syndrome, and every time I get an opportunity to shout my son’s worth.

My favorite part of the day is kissing both my little boys’ heads and whispering, ‘You are perfect, you are loved, you are important, and you are exactly who our family needs.’ They make me better, and I am very lucky.”

Mom takes a photo with her two sons all dressed up in church attire
Courtesy of Mallory Judkins
Family of four take photos together while dressed up for church
Courtesy of Mallory Judkins
Mom smiles at her son with Down syndrome while taking family photos
R. Hope Photography

This story was submitted to Love What Matters  by Mallory Judkins of Colorado. You can follow her journey on Instagram. Submit your own story  hereand be sure to  subscribe to our free email newsletter for our best stories, and  YouTube for our best videos.

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