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veya's story

Veya's story

Sometimes championing possibility looks like choosing hope over fear.

Veya VanderBrugghen’s mom, Krystal shares her story of choosing hope.

When a Down syndrome diagnosis enters your life, fear often shows up first. Fear of the unknown. Fear of the “what ifs.” Fear of a future that looks different than the one you had imagined. It whispers doubts and paints pictures of limitations, leaving parents and loved ones feeling unsteady.

But here is the truth: Fear steals today, while hope makes today possible.

Hope allows us to see past statistics and stereotypes and into the heart of our child. It reminds us that our little ones are not defined by a diagnosis but by their laughter, their courage, their stubborn determination, their unique gifts, and the immeasurable love they bring into our lives.

When we choose hope, we see opportunities where fear only sees obstacles. Hope teaches us to celebrate milestones, whether they come quickly or slowly. Hope doesn’t deny the challenges; it simply refuses to let them have the final word.

Holding onto hope shifts the story. It turns questions like “What if?” into “What could be?” It keeps our hearts open to wonder, to unexpected beauty, to a future that may not look exactly like what we planned, but it can be richer than we ever dreamed.

I know this because I’ve lived it.

When we first received the Down syndrome diagnosis for our daughter, fear was our immediate companion. As parents, we long to protect our children from pain, and yet from the very beginning, we were confronted with the reality that we might not be able to and that our time with her could be short.

Our daughter, Veya Hope, spent her entire life (a year and a half) within the walls of a hospital room. We never got to take her home. And despite the fact that she lacked experiences beyond those walls, she filled our lives and so many others with something far greater than we could have imagined: hope.

In the beginning, we were afraid to grow too close to her. Fear whispered that if we held back, if we guarded our hearts, then maybe it wouldn’t hurt as much if God chose to take her early. We thought holding back could protect us. But God, in His mercy, protected us in a far greater way. He dismantled that fear and taught us what it meant to truly surrender. Slowly, He helped us lay down the burden of trying to control the outcome and instead trust Him fully with the life of our daughter.

One of the greatest shifts in our perspective came when we understood that this diagnosis was never a tragedy, despite what the medical staff first told us. Rather, it was an invitation. An invitation into a deeper walk with God, into a fuller understanding of love, and into a community we might never have known otherwise. We came to really understand that every single life is sacred, intentionally created and beautifully designed by God. Our daughter, with her extra chromosome, was not an accident but a masterpiece—truly fearfully and wonderfully made (Psalm 139:14).

Her middle name, Hope, quickly became our anchor. Little did we know when we chose it that it would be the very thing God would use to carry us through each long day and sleepless night. Looking back, it feels providential. Almost as if God Himself whispered that name to us, knowing that we would need it to survive the journey ahead.

Hope gave us strength when we were weary, feeling lost and alone. It reminded us that our story was being held in hands far greater than our own and that even in the hardest circumstances, God’s goodness had not abandoned us.

It lifted our eyes when the hospital walls seemed to close in, when test results discouraged us, when even a walk to go outside and feel the sun on her face was denied, and when all our careful preparations to bring her home ended in repeated disappointment. It held us steady when the future felt unbearably uncertain, reminding us that suffering is not the end of the story, that God’s promises remain steadfast, and that His presence would never leave us.

Hope was what allowed us to love Veya with everything we had. To risk our hearts fully, knowing they could be broken because hope reminded us that love is never wasted. It was the assurance that even if her life looked different from what we had dreamed, it was no less valuable, no less beautiful, and no less filled with purpose.

Her name was not chosen by accident. It was God’s gentle preparation, His way of placing into our hands the very word we would cling to day after day. And through Veya, Hope became more than just a name, it became a testimony of God’s faithfulness.

My husband and I always say that, to love her was to experience God’s love in its purest form. We firmly believe that God uses these special children to reveal His heart to us as our Father: faithful, gentle, and overflowing with compassion. Veya became our teacher in how to live richly, even when life felt restricted and confined. She showed us that a full life isn’t measured by where we can go, what we can or cannot do, or by endless experiences, but by the depth of presence, and all we truly need is to love fully.

It was a love we often felt compelled to defend, to show the world, and even to help our medical teams see through a different lens—one that honors the value and beauty of children with Down syndrome and the profound life they bring to their families.

Loving and caring for Veya was one of the greatest privileges of my life. Every moment with her—holding her tiny hand, feeling her spirit shine—changed me in countless ways. The love we shared, born from surrender and nurtured in the quiet of being fully present, does not end, even though she is no longer here. The fear of losing her was real, but the hope she brought into my life will stay with me forever.

Now that God has called her home, He reassures us not to worry—that He has her safely in His arms. And in that trust, He is opening doors for us to pour that love out on others, to protect and advocate for His special children, and to carry forward the courage, faith, and unconditional love Veya so effortlessly taught us.

To any parent just starting this journey: Your child is fearfully and wonderfully made, and their life is a blessing. There will be hard moments but also moments of incredible joy, love, and learning. Let hope be your anchor. Trust that God’s got your child in His hands. And let them show you what true courage and unconditional love really looks like.

From a mama’s heart that learned to anchor in hope and love without limits,

- Krystal VanderBrugghen

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