Emmy was a baby we prayed for long before we ever held her in our arms. Month after month, we waited and hoped, only to be met with disappointment. We went to doctors, sat through appointments, and endured endless tests, clinging to the possibility that one day we might hear the words, “You’re expecting.” The ordeal was exhausting mentally, physically, and spiritually. Every negative test seemed like a small disappointment
Just as we were about to begin treatments, the unexpected happened. I still remember the moment we saw the faint pink line appear on that test. After all the waiting, all the tears, and all the prayers, there it was the miracle we had dreamed of. I shed tears I wasn’t aware I still held inside. That little sign indicated our baby was finally coming
From that moment, Emmy wasn’t just a hope she was real, and she was ours. Every flutter, every heartbeat, every doctor’s appointment reminded us that God had heard us. Emmy’s story began long before her birth. She was wanted, she was cherished, and she was loved fiercely from the very beginning.
I took care of myself the best I could eating well, exercising, and taking vitamins. I wanted to avoid the complications I had during my first pregnancy.
At 10 weeks, we did genetic testing. Since I was almost 40, the doctor suggested it. We waited anxiously for results. When they came back normal, we felt relieved. That is also when we learned we were having a little girl. Our son, Baron, was thrilled.
The next 10 weeks were full of joy. We picked names, planned the nursery, and dreamed of the future. But everything changed at our 20-week anatomy scan.
During the ultrasound, the tech kept looking at our baby’s head without saying a word. I immediately felt something was wrong. After a long wait, she told us the doctor would meet us upstairs.
The doctor said there was something unusual about Emmy’s skull. We were sent to a specialist the next day. That doctor—who had never met us—told us Emmy might have a type of dwarfism that would not let her survive and gave us abortion options. I was shocked and asked for another opinion.
We visited Seattle Children’s Hospital and talked to a doctor who helps with face and skull problems.
After looking at Emmy’s scans, he told us she likely had Pfeiffer Syndrome. It would be challenging, but she could live and have a good life. We felt hope again.
Pfeiffer Syndrome makes the bones in the head close too soon, which can affect how the face grows and make it hard to breathe.
Emmy’s case was severe. We spent the rest of the pregnancy preparing for her birth and lining up a team of doctors.
When Emmy was born, doctors took her right away to help her. Her eyes looked big, her head shape was different, and she had trouble breathing.
It was scary and emotional.
The first four months of her life were spent in the hospital. We had to make hard decisions, face risks, and hold on to faith. Emmy went through many surgeries and medical procedures. But she fought through it all.
Now she is 18 months old and doing better than anyone imagined. She still has challenges, but she is strong, determined, and deeply loved by her family and medical team.
Emmy may not look like everyone else, and that’s okay. Her differences are part of who she is, but they don’t take away from her beauty. In fact, they make her shine in a way that is all her own. Too often, the world notices what sets her apart before they notice the sparkle in her eyes or the kindness in her smile. But when you spend even a little time with her, you see quickly that she is more than labels, more than appearances—she is a child who wants the same simple joys as anyone else.
Our hope in sharing Emmy’s journey is that people begin to look past the surface. Instead of focusing on what seems unfamiliar, we pray they see her heart, her laughter, her courage. Children especially have a way of teaching us this lesson. To them, differences don’t have to be barriers. They are invitations to curiosity, to compassion, and to friendship.
If Emmy could speak her wish out loud, it would be simple: “Don’t stare. Don’t whisper. Just come close. Let’s play.” And in those three little words lies the truth we all need love sees beyond what is different.
