How Much Longer Do We Have?

Living by Faith While Our Son Is Dying

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Guest Contributor

His flushed little face and dark brown eyes beamed. He stood there with his hands awkwardly by his side, slightly leaning forward as the familiar chorus filled the backyard. “Happy birthday to you!” Something about his grin and stance made it clear he knew it was his party.

As I carefully placed the cake in front of him and watched him inhale to blow out the candles, I fought back the ache and the tears. Birthdays have become a marker in time, a reminder that we may not have that many left.

Our 3-year-old son, Finn, has a rare genetic disease known as Hunter Syndrome. Children with Hunter Syndrome typically develop normally until sometime between the ages of two and five, and then they begin regressing physically and cognitively. Talking, walking, and eating each slowly fade away, and most of these boys and girls do not live to their tenth birthday. My affectionate, fun-loving son is now walking around with a death sentence over his head — one that promises to be slow and painstakingly drawn out.

Real Joy in Real Pain

Knowing that my son, so full of life now, will slowly lose his, I wrestle with darkness and indescribable grief. Honestly, I often choose denial over reality. Pushing down the sadness feels like an appropriate coping mechanism at times. But the hospital visits are built-in reminders, week after painful week, that his body is not working the way it should. Each time, Finn’s little body is hooked up to a pump and tubes to receive enzyme infusions. Speech and physical therapies help him maintain range of motion and learn as many words as possible before the disease takes over.

As much as I wish I could escape, this is my child’s story, and now it is mine.

But instead of dreading the future, I am striving for joy in the present — not joy as the world sees it, but the joy that only God himself can supply. I do not want to miss time with my son because I am already grieving his death. I love the phrase choose joy, as impossible as it feels most days. But my husband and I have decided to choose joy, knowing that the only way for us to find joy in these circumstances is to choose Jesus — to step into the ups and downs of an authentic walk with him. Only here have we been able to wrestle through the weight of the grief places, while experiencing a joy that runs deeper than any pain — especially in the sweet moments we have with Finn now.

Our New Calling

Instead of denial, my husband and I are embracing our reality. We have joined with other Hunter Syndrome families to raise awareness about the condition, and to partner with researchers who may be close to a cure for this horrendous disease.

Because Hunter Syndrome does not affect larger numbers of children, sufficient funding for researching is harder to come by. We sensed God commissioning us to step out in faith from the life and work we once had known, to walk into another story as we work toward a cure, which has included my husband producing a short documentary about Finn’s story. Without any guarantee our son will be able to participate in the trial, we hope that God is writing a much bigger story than our own, one that may impact generations to come. He has met us in our darkest moments, and invited us into something more.

Your trials may not look anything like ours, but they are trying nonetheless. What hardships are you experiencing, and how might God be inviting you to slow down to savor more of him, or step out in faith into something bigger for his glory? The story will always be sweeter when we trust him to weave our story of suffering into his bigger plans — for us and for others.

As I slow down and savor simple moments — listening to my son’s giggles, watching him play with his sisters, holding his chubby little hand as we walk our dog — I am tasting some of the greatest joy, one we will know someday in full. I am realizing that deep sorrow can be a catalyst to finding a contentment in Christ we otherwise would have missed. Jesus himself endured the very worst imaginable “for the joy that was set before him” (Hebrews 12:2).

When Jesus was preparing his disciples for the suffering they would face, he said to them, “You will weep and lament, but the world will rejoice. You will be sorrowful, but your sorrow will turn into joy” (John 16:20). He did not sugarcoat the pain, but he promised something greater, to be purchased with the pain of the cross.

He was not insulated from suffering. He himself prayed, “Father, if you are willing, remove this cup from me” (Luke 22:42). He wept. He mourned. He grieved deeply. He lived in the tension of a painful story to fulfill God’s bigger, ultimate story. He knew this life was not the end. A new story was being written — and is still unfolding today — one of redemption and hope. This is our story.

Our Story, His Glory

Choosing Jesus means choosing to accept his invitation, “Come to me, all who labor and are heavy laden, and I will give you rest” (Matthew 11:28). Even though we are living a story we never would have chosen for ourselves, we are learning to embrace the story God is writing for us. We are surviving the grief and pain because we are finding new depths of joy in him as we trust him to write our hard story into his.

lives in Charlotte, NC, with her husband, Jon, and their three beautiful children. Her son Finn was diagnosed with Hunter Syndrome in 2016. She now serves on the board of Project Alive, a non-profit focused on funding a cure.