In the decade since I lost one of my twin boys to undiagnosed twin-to-twin transfusion syndrome (TTTS), life has continued its course. Though the pain of losing Leo still lingers, I’ve persevered. I pursued a career in nursing and welcomed three other children, alongside our surviving identical twin, Ethan. Life has progressed for Ethan as well. He shines academically, taking home the spelling bee trophy for his class. He plays safety on his football team and pitches for his baseball team, proudly wearing the number 6—chosen in honor of his twin brother Leo, who was born on March 6. Ethan has friends who adore him, and his family is everything to him. Everyone who knows him is aware that he has a twin brother named Leo.
When I was first approached about sharing the photo I captured of Ethan at Leo’s grave, I immediately agreed. It was a poignant representation of the twin bond and the love shared between brothers. It also highlighted the heart-wrenching impact TTTS can have on families. If sharing our story could educate others about the condition that took my son and Ethan’s twin, I was eager to do so. For four years, our family had been participating in awareness walks and fundraising efforts. Opening our hearts could potentially help other families in similar situations find solace.
I never anticipated that the image would gain such widespread attention on social media, reaching places like England, the U.S., Germany, Slovakia, Indonesia, Israel, and Japan. It was astonishing. People recognized the beauty I had seen five years ago when I discovered Ethan confiding in his brother at the gravesite about starting school.
However, my initial sense of pride was quickly overshadowed by a wave of negative comments online. While the positive messages outweighed the negative, the harsh judgments were still painful: “This mother needs help,” “Someone assist this family, they’re unwell,” “This child is depressed,” and “This was staged; this child never knew his brother.” I found myself retreating, crying alone, and questioning whether those critics would still voice their opinions if they truly knew Ethan—the boy who beams when he shares stories about Leo and proudly shows off his Elvis collection, as Elvis was also a surviving twin.
Ethan is not depressed. If I had ever seen signs of sadness in him, do these commenters think I would ignore it? Would I allow our story to be shared or let Ethan spend time fundraising if it caused him pain? It’s a delicate balance—remembering Leo while acknowledging that Ethan is his own individual. Leo is a part of who Ethan is, but he does not define his entire identity.
Despite the hurtful remarks from strangers, my resolve to share our journey has only strengthened. We will not be deterred by those who choose to judge us out of their own unhappiness. We did not ask for the challenges we face, but we carry them with pride, leaving a legacy for Leo along the way.
When the boys turned 10, it was a celebration unlike any I had envisioned when I first posted that photo on my social media. Ethan’s dreams came true as he helped raise awareness about TTTS while honoring Leo. It was a testament to what he always wanted—to leave a mark for his brother on this earth. Initially, it was always Ethan and Leo, but after losing Leo, it became just Ethan. For a brief moment, as our story resonated worldwide, it was once again about Ethan and Leo.
Now, as baseball season unfolds, Ethan is back to being a joyful, vibrant kid. We discuss the articles written about us, but life goes on. Perhaps in Ethan’s heart, he understands that Leo is at peace, their story has been told, and their mission fulfilled.
Our journey may not resonate with everyone, but it is uniquely ours, and we take pride in it. We were honored to share the bond between two brothers, and in return, the world gifted us a legacy for Leo.
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Summary
This heartfelt piece tells the story of a mother, Sarah, who navigates the loss of her twin son Leo to TTTS while celebrating the life of his surviving twin brother, Ethan. Despite facing harsh criticism online after sharing a poignant photo of Ethan at Leo’s grave, Sarah remains determined to raise awareness about TTTS and keep Leo’s memory alive. Their journey illustrates the enduring bond between brothers and the strength of a family navigating grief.