As I sat alone in the NICU, cradling my tiny, perfect baby in my arms, my postpartum body ached and my mind was spinning with a whirlwind of new information. Yet, amid the fatigue and uncertainty, one thought rose to the forefront of my heart: “You are exactly who our family needs.” I whispered those words over and over, pressing gentle kisses to his delicate little head. Since that first day, I have repeated those words countless times—through tears and laughter, surgeries and miracles, at doctor’s appointments and in the quiet of our home.
Mom holds newborn son in the hospital
Courtesy of Mallory Judkins
My son was born at the very beginning of the COVID-19 pandemic, a time filled with unexpected challenges. Our family was living in a new state, my husband had just begun a new job, and the world was navigating an unprecedented crisis. He arrived quickly, after just ten minutes of pushing, and began nursing immediately. In those first precious moments, my husband and I savored the calm simplicity of holding our newborn. It was fleeting, of course, because life often has a way of nudging us to refocus on what truly matters.
One of those moments came on a Wednesday when my son was only two days old. The day before, we had received the news that our son had Down syndrome. That morning, after an echocardiogram, we had spoken to a cardiologist from a nearby children’s hospital. She explained that our son had multiple congenital heart defects and would need the specialized care of a higher-level NICU. We had only an hour before the emergency transport team would arrive.
Mom looks down at newborn son with health complications while holding him in the hospital
Courtesy of Mallory Judkins
Watching my baby being wheeled away in an incubator, surrounded by monitors and machines, my voice broke as I begged the ambulance driver to take care of him. I squeezed my son’s tiny hand through the incubator, whispering every word of love I could muster. We weren’t allowed to ride with him and were instructed to meet him at the hospital once he was settled.
Left alone in my hospital room, my husband and I prayed fervently. I cried, pleading with God to protect my son and to help him feel our love even when we couldn’t be right there with him. We prayed for the transport team, the doctors and nurses who would care for him, and everyone else who would interact with him. Amid our fear and grief, we sensed that this moment, painful as it was, would be a pivotal chapter in our family’s story.
Couple smile big and hug during family photos
R. Hope Photography
That day marked the first of many times I would place my son into the hands of skilled medical professionals. His doctors, surgeons, nurses, therapists, and all the hospital staff have our deepest gratitude and love. I hope some of them read this and know how much they have meant to our family.
One of the greatest blessings during our hospital stay was the community that immediately surrounded us. I kept a detailed journal during our ninety-six days in the hospital, noting the tender mercies we experienced each day. Some were small gestures—a nurse texting a cute photo of my son in his swing after my departure. Others were profound, like the cardiac surgeon gifting us a small statue of a boy holding a golden heart the morning of my son’s surgery. A housekeeper gave my son a nickname and assured us, “Once you’re on my prayer list, you’re on for life!”
Mom crouches down next to her son with Down syndrome in a wagon
Courtesy of Mallory Judkins
I also found an online community of mothers raising children with Down syndrome. Through them, I discovered organizations offering care packages, support, and guidance to families navigating a new diagnosis. I cried while watching videos of young adults with Down syndrome achieving scholarships and pursuing their dreams. I met local moms whose children were slightly older than my son, and their experiences became an invaluable source of encouragement and hope.
Of course, not every moment has been easy. Life on this journey is raw, unpredictable, and sometimes overwhelming. The days surrounding my son’s cardiac surgery were particularly difficult. Knowing the complexity of the procedure, the thought of riding with him down the hospital elevator to the operating room made my stomach turn. At home, I was haunted by the empty crib, and struggled to answer my toddler’s questions about when his baby brother would return. People have made insensitive remarks about Down syndrome, leaving me torn between advocating for my son and simply letting go. I worry about future challenges and whether others will recognize the light in my son the way I do.
Special needs mom takes a selfie with her son with Down syndrome while at the doctor
Courtesy of Mallory Judkins
During these hard days, I lean into the lessons I’ve learned. I reflect on how these experiences have softened yet strengthened me, shifted my priorities, and deepened my compassion for others. I look into my son’s almond-shaped eyes, the same color as mine, and whisper again, “You are exactly who our family needs.” I have discovered an inner strength I never knew existed and have learned to grant myself compassion as I navigate 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 spoke to friends about my sadness over life not feeling “normal.” Our weeks were filled with appointments, therapies, and adjustments, and I missed the cozy snuggling moments I had enjoyed with my first son. Recent food sensitivities required a permanent switch to specialty formula. I wasn’t sad he needed it—I was grateful science provided the option—but I mourned the last bits of “normal” I thought I had.
Then, a friend offered perspective that stayed with me: “One day, you’ll realize everything is normal. It may be a different normal than you imagined, but it will be your normal—and it will be beautiful.”
That moment arrived a few weeks later. After a medical appointment, we saw familiar faces outside the children’s hospital. It was not “normal” in a conventional sense—talking about oxygen levels and cardiac updates instead of last week’s sports game—but it was our normal, and it felt right.
Mom holds her son with Down syndrome outside while he laughs
Courtesy of Mallory Judkins
Today, I am overwhelmed with gratitude. Our son has a team of dedicated therapists and specialists who support him and our family. Our local Down syndrome association has become like family. Through him, we have met incredible people and built relationships we never would have otherwise. My father once told me we would learn lessons in this journey we couldn’t learn any other way—and he was right. Life has given me a gift through my son.
I am now able to love more deeply. I am a better mother, advocate, sister, daughter, aunt, educator, and friend. Because of him, I am pursuing a Master’s degree in Early Childhood Special Education, hoping to guide other parents in understanding that a disability is just one part of a child, not the whole story. We need each other, and life is richer when we can learn from others’ experiences.
Mom of two sons smiles for a photo with orange flowers
Courtesy of Mallory Judkins
Heather Avis’s book, Different: A Great Thing to Be!, has stayed with me since I first read it. Each reading reinforces the beauty of difference and reminds me to celebrate it daily. Every therapy milestone, every proud comment from my older son, every encounter with the world’s misunderstandings strengthens my resolve to honor my son’s worth.
My favorite moment each day is kissing both my boys on their 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 endlessly grateful.
