On July 4, 2017, my fiancé and I found out we were expecting a baby. We were beyond excited, and physically I felt great during the pregnancy honestly, it was like something out of a dream. Emotionally, though? That is a different story.
At 20 weeks, we went in for an ultrasound to find out the baby’s gender. Instead, we found something that flipped our world on its head. Our son’s feet were clubbed, and one of his hands was different. As a mom, I immediately wondered if I had done something wrong, and the emotional weight from that fear felt heavy. My joy turned to fear in an instant.
What had started as a high-risk pregnancy became manageable, thanks to family and friends who stood with us through it all. My fiancé would always tell me that it could always be worse, but nothing had prepared us for what lay in store after the birth of Tobias. We braced ourselves not knowing what was coming for us.
No sooner had he arrived than the nurses noticed that his jaw was small and recessed, which made feeding a challenge. I needed to process another obstacle, and again, I thought it was something we could handle. Tobias spent 11 days in the NICU, and those days were exhausting, scary, and full of hope all at the same time. Every time we face fear and in next second hope that was so confusing.
It was upon going back home that I began noticing more differences. By six weeks, Tobias wasn’t smiling yet and rarely ever blinked. I knew something was not right, despite being reassured by everyone that he would catch up.
During a check-up with his plastic surgeon at two months, I shared my concerns. The doctor paused, looked at Tobias, and then gently told me that he likely wouldn’t ever smile. I remember asking, “So he’ll never smile at all?” The answer crushed me. I was expecting reassurance, not a diagnosis. I walked out in shock, barely holding back tears until I could lock myself in the car. My heart broke hearing he might never smiles.
That same day, the doctor called with a possible explanation: Tobias might have Moebius Syndrome. My fiancé put the call on speaker so we could both listen. The moment she described his lack of facial movement, we exchanged an worried of glance , the limb differences, and the rare condition, I immediately began researching. Every article and image seemed to confirm what the doctor had said. In those first days, I felt a wave of grief and confusion. Why us? Could I handle this? I felt overwhelmed with grief and questions.
But I knew eventually that I couldn’t dwell in a place of despair. I needed to be present for Tobias and take things one day at a time. So I focused on small thing like our happy moments. As time passed – months, years – acceptance and strength came along little by little. Writing about our journey and sharing Tobias’ story with others helped me process my feelings, and it eventually inspired me to start a blog. I learn to take day by day and love to share our story.
Now Tobias is three years old, filled with life, laughter, and personality. He can’t smile in the traditional way, but he expresses his happiness through many other ways: in dancing, laughing, hugging, and lighting up a room. His joy is contagious, and it reminds me every day that love and laughter manifest in many ways.
As parents, my fiancé and I are giving much-needed attention to confidence and self-independence-building in Tobias. We want him to chase his dreams without any second thought and greet the challenges head-on living fully, just as any other child does.
Our biggest fear is not Tobias’s differences, but how others might treat him, and that is where awareness and inclusion become so vitally important. For the more anyone is exposed to differences, the more naturally accepting and understanding they become. July 24 is Moebius Syndrome Awareness Day-a time to wear purple, share your stories, and to advocate for children with this extremely rare condition. Together we can see him happy life with hope.
Moebius Syndrome manifests for Tobias in a few ways: He doesn’t have any movement of most of his face; he doesn’t blink voluntarily, and has limited eye movement. He had to have his clubbed feet cast and wear medical shoes and also had surgeries on his hand. Physical therapists work with him regularly to try and achieve milestones, but although progress is slower, he manages everything at his own pace. Tobies overcome challenges in his own way.
Despite all these difficulties, Tobias has blossomed. Every laugh, every step, each new skill he masters, reminds us of his resilience and the supreme joy he brings into our family. He has taught me that love is far greater than fear, and that happiness doesn’t always require a smile. Tobias is perfect just as he is, and we are endlessly grateful for the gift of raising him. Tobies shows us joy and love every day.
