In a room dimly lit, I felt an overwhelming sense of dread that I couldn't articulate. My newborn son appeared healthy: he had a robust cry, was a rosy pink, and seemed the picture of vitality. Yet, deep down, I sensed something was amiss, though I couldn’t pinpoint what it was.

“Is he okay?” I inquired hesitantly. The specialist approached my bed, locking eyes with me.

“Yes, Mrs. Rogers, he appears fine. We still need to conduct some tests, but we’ve excluded the worst-case scenarios.”

I let out a long-held breath. Hours had gone by since they took my son for examination, and I was left alone, wishing my husband were there. He had gone home to care for our two little girls.

“Where is my son?” I pressed every nurse I encountered.

“He’s fine, Mrs. Rogers. He’s in the nursery. We will bring him to you soon,” they assured me.

Yet, he didn’t return. As I trembled from the cold, anxiety surged within me. Something was wrong. I spent those long hours whispering endless prayers.

“Please, Lord, let my son be okay. I promise to be a better person if you grant me this one request.”

Later that morning, the specialist entered my room, looking weary. She took a seat beside me, gently grasping my hand.

At that moment, the sun dimmed behind a cloud, casting the room in shadows. My skin felt clammy, and a lump lodged in my throat, making it hard to breathe.

As I gazed into her eyes, I braced myself for the news I already feared.

“We’ve completed our tests, and I regret to inform you that we’ve confirmed that Tommy has Trisomy 21, which is also known as Down syndrome,” she said, pausing before adding the last words.

The room spun as tears filled my eyes. She continued speaking softly, but her words became muffled as I struggled to comprehend them. What was she saying?

“... Down syndrome is a genetic condition. Tommy has three copies of the 21st chromosome instead of the usual two. This can occur when an extra chromosome is contributed by either the egg or the sperm during conception... Many children with Down syndrome also face heart and gastrointestinal issues, but Tommy is healthy in those regards. However, he will face developmental delays. He will learn at a slower pace than typical children, but you will have access to special educators and health professionals who will assist him in reaching his potential.”

With that, she handed me a stack of informational pamphlets on Down syndrome and slowly walked away. My worst fears had materialized: my child had a disability. I felt utterly broken. “How will I endure this?”

In the following two years, each day flew by in a flurry of activities. Numerous professionals visited our home regularly: doctors, occupational therapists focusing on Tommy’s fine motor skills, physical therapists addressing his larger movements, speech therapists assisting with his speech, and special education teachers helping him learn the skills typically acquired by other children.

A multitude of voices instructed me on how to raise my son, how to engage with him, and what was best for him. The demands of caring for a child with a disability felt overwhelming. Meanwhile, I still had my two little girls, who also needed their mother. I felt guilty for the time and energy I devoted to Tommy, fearing I was neglecting my daughters. This imbalance became painfully clear one day as I found them on the floor with their dolls.

“Rebecca, Rosie, what are you doing?” I asked, noticing the blanket spread out between them, surrounded by baby toys and dolls.

“We’re playing Baby Group, Mommy.” I was both shocked and touched. My daughters were mimicking the therapists, engaging with their dolls as they had seen those specialists interact with Tommy during his Baby Group sessions. This had become so routine for them that they preferred to play “therapist” instead of “house.”

“Mom, I feel like such a terrible mother,” I cried during a call one night. “I love my Tommy, but I’m so angry at God for letting him have Down syndrome! I feel like I’m being punished for something I did, and Tommy is suffering for my sins. I should have been able to prevent this!”

At this point, I was a mess, sobbing uncontrollably in the dark. My mom had heard it all before and felt helpless to console me. Despite her past efforts, I remained inconsolable. She could only listen and pray.

“Renee, you haven’t done anything wrong! God doesn’t work that way. No one is being punished! You are a wonderful mother!!!”

I could hear her exhale. I knew she wanted to help, but I was emotionally stuck, drowning in guilt and sorrow, dragging everyone down with me. I felt lost and didn’t know how to move forward.

“I know, Mom,” I sighed, trying to find calm. “But every time I look at Tommy, I see a label on his forehead that reads ‘I have Down syndrome.’ When I hold him, play with him, or talk to him, I can’t just see my son; I only see that label! I’m hyper-aware of what he’s learning and which muscle groups we’re working on with each interaction. I never get to just ‘play’ with my son! It feels like I’m his therapist and teacher instead of his mother!” Tears streamed down my face once again as my heart shattered anew.

This conversation replayed with my mom many times over the past two years. She was truly the only person I could confide in. My husband was in denial, acting as if everything was fine. I resented his apparent oblivion to Tommy's condition.

“Of course, it’s easy for him,” I would think. “His life hasn’t changed! He doesn’t have to take Tommy to therapy and appointments all the time. Sure, he loves Tommy and plays with him, but I’m the one doing all the extra work!!!”

I envied my husband's ability to accept Tommy as he was, feeling disgusted with my inability to do the same. When James played with Tommy, it was just play for him—he didn’t think about teaching skills; he simply enjoyed his son. His unconditional love for Tommy frustrated me, highlighting my struggle to see beyond the Down syndrome.

“God, please help me love Tommy. Open my eyes, Lord; I want to love my son… Please… Amen,” I cried as I opened my eyes slowly. I prayed this same request every night.

“When will you answer me, Lord?” I whispered as I settled into bed, hoping Tommy would sleep through the night. “This feels so unfair. Why did I have to be the one with a child who has a disability? What did I do to deserve this? What did Tommy do to deserve it?” I pondered.

After what felt like hours, I finally drifted off to sleep.

“Mom, you will never believe this,” I nearly shouted into the phone. “I just read about a new procedure that can surgically remove Down syndrome from Tommy!”

I was overwhelmed with joy, barely able to contain my excitement.

“Yes, I’ve already arranged it. I’m taking Tommy for the surgery next week. I can’t wait, Mom; we will finally have our ‘normal’ little boy! Tommy will be the boy he was meant to be!”

Suddenly, the room brightened. I took this as a divine sign that this surgery was a gift from God. “We are so fortunate,” I sighed contentedly.

“Okay, Tommy, be a good boy,” I said as I laid him on the gurney days later. “These kind doctors and nurses will take excellent care of you. Mommy will be right here waiting when you wake up. We will have so much fun afterward. Just wait and see.”

Tommy’s eyes sparkled at me, radiating complete trust and unconditional love.

“It’s funny,” I thought, “I’ve never noticed that before—the way Tommy looks at me.” I wondered if my anger had clouded my vision.

“Oh well, that’s alright,” I reassured myself, “I won’t be angry anymore. I promise. Once this surgery is over, I’ll finally get to play with my son!”

I waited what felt like an eternity in that hospital waiting room, utterly alone, as my husband refused to join me. He didn’t want Tommy to undergo the operation. He adored Tommy just the way he was…

Eventually, a nurse entered the waiting area, announcing, “The surgery is complete, Mrs. Rogers. We successfully removed the Down syndrome. Here is your son, here is Tommy.” I had been so focused on the idea of no more Down syndrome that I hadn’t truly looked at the child in her arms.

“Tommy, hi sweetheart, it’s all over. You’re all better now,” I whispered soothingly.

Tommy didn’t respond. He remained still, resting his head on the nurse’s shoulder, staring blankly into space. My heart sank as I gazed into his eyes; my world began to crumble. Tommy was awake. His eyes were open but devoid of expression.

“Tommy, sweetheart, it’s Mommy,” I reassured him. I waited for him to acknowledge me, but he just continued to gaze blankly into the void. At that moment, I realized—Tommy had the eyes of a lifeless doll. They were the eyes of someone who had lost their spirit.

“Oh, dear God,” I screamed, “What has happened to Tommy?”

The nurse tried to console me, explaining that while they were able to successfully remove Tommy’s Down syndrome, the surgery had affected other parts of him. Down syndrome was an integral part of who Tommy was. Removing it also took away other facets of his identity.

My heart raced, and I struggled to breathe. I felt as if I was drifting away, disconnected from reality. I could hear someone crying out, “NO… NO… NO… NO…” It seemed so distant. I didn’t realize those sounds were coming from me.

Nurses and doctors surrounded me, trying to offer comfort, but there was nothing they could do. I had made the gravest error of my life, and no medical intervention could remedy it. I had given my consent to have what I considered a flaw removed from my son. The very flaw I could never see beyond. It wasn’t until I looked into his eyes in that moment that I understood—by surgically removi