When Jordan St. Cyr’s daughter was diagnosed with Sturge-Webers syndrome as an infant, he and his wife couldn’t imagine what their future held.
“That first year of life was tumultuous,” he said in an interview with Indiana Right to Life. “We just felt so helpless. There wasn’t really much we could do other than just rely on God and the path forward.”
St. Cyr was just starting to hit his stride as a Christian musician, making multiple trips from his home in Manitoba, Canada to Nashville each year to make connections. His and his wife’s dream was to one day move their family to Nashville.
But with Emery’s birth, the St. Cyrs decided to hit pause on that dream and hunker down as a family unit as they tried to understand and care for their new baby. The St. Cyrs already had three other children, with baby Emery making number 4.
“When stuff goes down as a family, you huddle, you just get close,” St. Cyr said. “And I just remember when she was born, we brought the TV from downstairs up in the living room, and we put it on the wall and we brought the couch over. And this was just our room that we gathered in, and we just stayed close for a while.”
A Light for All of Us
Sturge-Webers Syndrome is a neurological condition marked by an overgrowth of blood vessels usually on one side of the face and head. Sometimes the condition can affect both sides. For Emery, it affects her left side. Sturge-Webers Syndrome is associated with a port-wine birthmark on the face, seizures, high risk of stroke, blood clots, weakness on one side of the body, developmental delays, and increased pressure in the eye (glaucoma).
Emery’s first seizure struck when she was 5 months old.
“We knew early on that, though we prayed for that miracle and though the church rallied around us to pray for that, we knew early on that God was going to provide a miracle in a different way,” St. Cyr said.
“With Emery, there was just this depth that God was drawing us to a sense of compassion for the needs of others around us,” he said. “The work that he did in our kids with a child with special needs in our family is just—it’s miraculous the way everybody softens. If you allow yourself to soften. That’s what we saw. And our eyes began to open up to the needs of the others around us.”
Before Emery was born, St. Cyr had admired another family in his neighborhood. He saw how loving the children in the family were and he told his wife, “Man, I just hope and pray our kids turn out like them. They’re so sweet and they’re so kind.”
And St. Cyr knew why: The family’s youngest child had Down syndrome. As with Emery, the whole family had softened to the special needs of their littlest child. St. Cyr couldn’t have imagined God’s plans for how a little girl named Emery would do the same for his family.
“I don’t know what God’s intention is in all this,” he said. “I don’t believe He causes the bad stuff, but I do know He uses it. And to just know that Emery came into our life to draw us so close to Him, and it’s giving us the kids we prayed for. I don’t see it all as bad. Our little one is a light for all of us just leading away.”
Emery helped St. Cyr to really zero in Christ’s words in Matthew 22: 37-39: “[Jesus] said to him, ‘You shall love the Lord, your God, with all your heart, with all your soul, and with all your mind. This is the greatest and the first commandment. The second is like it: You shall love your neighbor as yourself.’”
“Before Emery, I saw my neighbor, but I didn’t see my neighbor,” St. Cyr said. “And so just to see so many people that stood in between their miracle and the not yet—people that believed in God, believed in His greatness, His sovereignty, His miraculous healing power, but have not received it. It just blew my mind.
“And so for me as a songwriter, that’s kind of just been my lane,” he said. “To just write songs that provide comfort, that point people back to the hope and mercy of Christ.”
Fires
St. Cyr’s song “Fires”—which would eventually become a Top 20 hit on Christian radio—is one such song. St. Cyr had written it about six months before Emery’s birth. The song was about a man named Nathan, a husband and father of three who worked multiple jobs to provide for his family. He was on the verge of losing his home, but a community of Christians volunteered to pay off his house and some additional debt that he owed.
“Looking back now, I realize that God gave me Nathan’s story so that I could walk through mine,” St. Cyr told KLOVE in an interview in 2021.
About 18 months after Emery’s birth, St. Cyr released “Fires” in the U.S. market. Its success allowed the St. Cyrs to finally follow their long-term dream and move to Nashville.
While the St. Cyrs were overwhelmed as they moved their whole lives to a new country, after several months, they eventually began to feel more and more settled in their Nashville community.
“It wasn’t leaving one home for another,” he said. “It was really God just calling us to expanding.”
Two years later, the St. Cyr family is feeling still more rooted in their Nashville home. And Emery, who is almost 5, has achieved remarkable milestones—milestones the St. Cyrs once wondered would be possible.
“She’s doing really good,” St. Cyr said. “She started preschool this year. She learned how to ride her bike. You just would never know at this point. She does have some weakness on the right side of her body, so she’s very much left-handed. But we are so grateful for the season that we’re in. We just feel that God has been so good to us, and we just feel like we’re back.”
Emery has now gone 18 months without any seizures.
“The MRIs are kind of revealing that she should be having a lot more activity,” St. Cyr said. “So the theory is that most of that wiring that is shared by the left and the right lobe has really rewired onto the right side. And so yeah, we’re again, just grateful for the season we’re in.”
Even so, St. Cyr says that he wouldn’t undo his families’ harder times, even if he could.
“I think having a child with special needs—and a child for that matter, I think every parent would testify to this—is that they literally take the life out of you to give you a new one,” he said. “And the quality of life that we’ve experienced is just…we wouldn’t trade it for the world. We wouldn’t give it back if we knew that our little Emery could be healed in this moment. Yet we’d have to give up all the things we’ve learned, all that we’ve grown, and all that this little girl has taught us. We couldn’t do it. We believe the world is better off. We are better off because of who she is and how she is right now.”
See Jordan St. Cyr perform live at Indiana Right to Life’s 10th Annual Christmas Gala, featuring keynote speaker Banjamin Watson! For more information and to buy tickets, click here.
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