“You will go out in joy and be led forth in peace; the mountains and hills will burst into song before you, and all the trees of the field will clap their hands.” (Isaiah 55:12 NIV)

God told me that day he would lead worship. You see, he was already a singer. A babbling baby full of tunes with no words, but a heart of music. “Da-de-da-de-da-de” would resonate every evening from his room. Often, we would gently place our phone under the door and secretly record those melodies. It was a happy place, a safe place, a space of curious joy and experimentation with sounds and notes.

The picture was so clear in my head. One day he’d be standing on a stage, guitar in hand strumming beautiful notes of worship, his heart resonating a contagious rhythm.

I was so hopeful—so sure of what that future promise might look like. I wrote his nickname, “EJ”, in the margin of my Bible. It was a way for me to declare promise, hope, and the presence of Jesus that day when he was only six months old. Isaiah 55:12 was Ethan’s verse—his promise.

I often remembered that promise

…as Ethan’s babbles transformed into words. Made up songs, worship songs, and all those silly songs about ABC’s and 123’s filled our home. As Ethan grew his voice became stronger, but his body seemed weak. He was slow to reach physical milestones, and when he did learn to walk, he struggled with stamina and balance. I had a felt sense—a knowing from deep in a mama’s heart… Something was not right.

Maybe physical therapy would give us some ideas—some insight into his limited abilities. I will never forget the posture of the therapist as she observed Ethan. She embodied care. I had the sense that she wished what she saw was not true. She did not have medical permission to diagnosis him but seemed to have a knowing—an intuition—of the suspicion in my own mama heart. Something wasn’t okay. In fact, our lives were about to change. Our journey was not going to end with a few physical therapy sessions. It was just the beginning.

Tests at Children’s Hospital confirmed what the therapist could not say—Duchenne Muscular Dystrophy, a degenerative muscle disease. Ethan’s body does not make dystrophin, a protein that helps build muscle. He would not gain physical strength and ability with each passing year. In fact, his strength would slowly fade. The truth was I was going to watch my son die.

Grief and shock hit hard

…like a punch in the gut. In a half-day appointment everything changed, and nothing changed. Ethan still loved cars, bugs, playing outside and of course singing, but from here forward everything would be seen through a different lens and held in a different light.

That night my husband and I cried ourselves to sleep.

The words of Isaiah 55:12 sat waiting for me the next morning in a text from a friend. She had no idea what had occurred in our world the day before. She was simply quoting a scripture birthed from her own heartache. I quickly opened my Bible. “EJ” was still written there in the margin. Time had not worn off the ink.

My eyes filled with tears. I remembered the strong presence of Jesus that day three years earlier and his gentle voice that had spoken into my heart. My promise…

What about my promise?

The joy and peace in that verse seemed distant and out of focus. The burst of song was quiet. The vision of Ethan faded. I was confused. I thought …I thought Jesus told me Ethan would lead others in worship?

I did not know the deep journey with God on the horizon. My lens had become small. My view needed refocused. My understanding needed shifted. I needed brought back to a more beautiful and truer definition of worship—one I had sensed and hoped for as a little girl yet had rewritten somewhere along the way.

What is worship anyway? It always seemed defined by “doing” for God. Worship was always spoken as gladness and praise. It was often expressed through songs, instruments, smiles, performances, missions, and acts of kindness.

Could worship come in the midst of heartache, questions, and pain? What if all I have are tears, anguish, complaints, and confusion? Could this pain lead me toward worship? Could worship look less like doing and more like being? I was thirsty for answers.

I looked at Isaiah 55 again.

My Bible’s header for the chapter stated, “An Invitation to the Thirsty.” I paused. Could a truer understanding of worship quench my parched soul? Verse 13 spoke into my questions and doubts.

“Instead of the thornbush will grow the juniper, and instead of the briers the myrtle will grow. This will be for the Lord’s renown, for an everlasting sign that will endure forever.” (Isaiah 55:13 NIV)

The weeks turned into months, and I grappled with my new reality—of Ethan’s reality. Isaiah 55 grounded me and launched me into a seven-year journey of understanding my grief through the biblical practice of lament. Would this practice of being honest with God like David, Job, Jeremiah, and Jesus expand my definition of worship?

The more I study lament, the more I recognize its song. Its notes are slow and often found in the minor key, but it draws me to Jesus in the most profound way. Its rhythm and flow are redefining the promise Jesus had given me that day.

Ethan may not stand. He may not strum a guitar or play keys on a piano. But his 11-year-old tender heart, bright smile, beautiful voice, weak muscles, daily needs, and cries for help all define a truer narrative of the wonder of his Creator. Ethan is leading me on a most unexpected pathway toward the heart of worship.

This disease may weaken his body and one day take his voice, but it can never take his song.

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