It’s all about the balloons. Each year on September 8, we embrace the joy of celebrating our son. As our family grows, we select themes that resonate with our children, and this year, my other two kids, Mia and Ethan, chose a dinosaur theme. The tradition of releasing balloons continues, and it brings them joy to see the colorful orbs ascend into the sky. With every passing year, we are greeted by stunning sunsets, a beautiful backdrop for a bittersweet occasion. The only element missing is our son, Max, who should have turned 7 this year. Max was our firstborn, but his life was tragically cut short after just 9 days.
Life took an unexpected turn on January 1, 2008, when I took a pregnancy test that revealed a positive result. My husband, Tom, and I were overjoyed, dreaming of our future with our first child. My intuition led me to believe it was a boy, and I eagerly explored nursery ideas and names. My pregnancy progressed smoothly; I felt great and was free from morning sickness. Little did I know, our world would soon be shaken.
The anatomy scan, typically performed around 20 weeks, should have been a routine check. However, the sonogram technician’s demeanor raised alarms. “Your baby likes to hide,” she remarked, followed by the arrival of our doctor, whose somber expression spoke volumes. “I’m afraid there’s a problem with your baby’s heart,” she said, leading us to a pediatric cardiologist who confirmed our worst fears: Max had hypoplastic left heart syndrome (HLHS), a severe congenital heart defect. Our hearts shattered, but one truth remained—he was already deeply loved.
Despite the grim diagnosis, we chose to continue the pregnancy, consulting high-risk specialists and praying for a miracle. On the afternoon of September 8, 2008, Max Jude entered our lives, and in that moment, I experienced a love unlike any other. Yet, the fear loomed large as we learned that HLHS typically necessitates a series of three open-heart surgeries, with Max’s first scheduled just days after his birth.
Watching him undergo surgery was agonizing. I felt guilt and pain, wishing to shoulder his suffering. Yet, the medical team assured us he was recovering well, and soon, we would bring him home. That evening, I held him in my arms and gave him his first bottle—a moment of pure joy mixed with anxiety.
However, that joy was short-lived. Unexpectedly, we received a call from the hospital informing us that Max had experienced a “blue” episode, and we needed to return immediately. My heart sank as I prepared for the worst. Upon entering the NICU, we were handed our precious boy, now lifeless. In that moment, I carried him to a quiet room, free from the tubes, where he could finally rest. Family and our pediatric cardiologist arrived, and I held him tightly, trying to grasp the reality of our loss. I couldn’t understand why this was happening.
In the months that followed, I struggled with anger and isolation, feeling as if life had continued without us. I avoided social gatherings, especially those involving children, and ultimately left my job. A friend suggested attending a neonatal loss support group, which became a lifeline. We met others who understood our pain and found various ways to honor their children.
A year later, we gathered with family and friends at Max’s grave. We read him letters, released doves, and celebrated his brief life with cake. Despite the heartache, we were also filled with joy, as I was expecting our second child, a daughter, soon. We had so much to share about her big brother.
Now, as Mia turns 6, she has begun to ask questions. Tom and I do our best to answer honestly, explaining Max’s heart condition and reassuring her that she and her brother, Ethan, are healthy. It’s heartbreaking to hear her express that she misses him. As Ethan turns 3, I know we will have similar conversations with him soon.
In recent years, we have chosen a serene spot by the water for our balloon release. This year, both Mia and Ethan eagerly participated, making it a heartfelt family effort. “Happy Birthday, Max,” we say, through smiles and tears. We cannot change the past or give him the healthy heart he deserved. We are left to ponder the milestones we missed with him. Yet, for nine precious days, we were blessed to know this remarkable boy. He will forever remain in our hearts.
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Summary
The author reflects on the emotional journey of celebrating the birthday of her son, Max, who passed away shortly after birth. Through balloon releases and family gatherings, they honor his memory while navigating their grief and the questions of their other children. This poignant story highlights the complexities of loss and the enduring love for a child who is no longer with them.