How to Face a Diagnosis with Resilience
Receiving an unexpected medical diagnosis for your child feels like time has stopped. Your heart tightens, your mind fills with questions, and the future seems to collapse. I experienced this with my son Moroni, and I want to share my story so that, if you are walking this path, you know you are not alone. In the middle of uncertainty, I discovered what resilience means and how it became my most powerful tool.
1. The Beginning of Uncertainty
I had already had two healthy children. With Abby, my oldest daughter, everything was calm and within expectations: she walked at one year old, said her first words at the right time, and was always peaceful. My son Mahonri was the complete opposite: fast, energetic, speaking and running early, doing everything with lots of energy. So when my last son arrived, I immediately realized things were different.
During pregnancy, there had already been signs. In an ultrasound, they saw something was wrong. The doctor told me my baby “was not okay,” that he had Down syndrome, a heart condition, and that his intestines were not connected. I remember being overcome with deep fear. They explained he would need surgery immediately after birth. That seemed impossible to me. I thought: “A newborn baby cannot go through something like that, how can such a tiny body endure it?”.
That day I left with immense sadness. As parents, we imagine a plan, a future with our children. You dream of achievements, moments, joys. And suddenly they tell you that everything will be different, and that blow is devastating.
The doctor tried to calm me. He said babies like mine could survive, that there were prepared teams. But he also told me that Moroni could only be born in specialized hospitals in Dallas, because he needed a full team of specialists to receive him. Only three hospitals were ready: Children’s Health, Medical City Children, and Baylor. That scared me even more. How serious was it that he couldn’t be born in just any hospital?
It was a very hard blow: the life plan I had imagined for my son collapsed before my eyes.
2. The Birth and the First Surgery
Moroni was born at 34 weeks. Two days later he had surgery to connect his intestines. He stayed in the hospital for three weeks. It was my first amazement: seeing how such a fragile baby could be so strong. That moment showed me that children are resilient and that life is worth fighting for from the very first breath. It also revealed that family resilience begins in those early days.
3. The Second Blow: His Heart
The challenges continued. At four months, Moroni was still in hospitals. One day they detected a heart murmur. We were sent to the cardiologist, and they told us he had severe congenital heart disease, that everything in his heart was wrong, and that he needed surgery within three months or he could die. That news shattered me. I cried for two days straight. I cried and cried. I released anger, sadness, and helplessness. No one prepares you to hear that your child could die. But after crying, I stood up. I understood that I had to keep fighting for him. That, in the end, is also resilience.
4. The Relief of a Definitive Diagnosis
And after they spoke about his heart, I finally received the diagnosis: Williams syndrome. For many it might sound painful, but for me it was a huge relief. Instead of sadness, I felt a burden lift off my shoulders. At last I understood the cause of what my son was going through; finally, I had clarity and guidance.
When you know the syndrome, when you understand your child’s condition, you can chart a path: which specialists to see, what treatments are needed, what medications may be required, and what type of care is appropriate. That knowledge becomes a tool that strengthens you as a parent and allows you to truly help. In that moment, I better understood what resilience means: moving forward with a map in the middle of the storm.
5. It’s Okay to Cry… but Don’t Stay There
Receiving a new diagnosis can be overwhelming, but it can also be accepted with gratitude. Because although it hurts, it also gives direction. It’s okay to cry, scream, feel fear, and take the necessary time to release the pain, but you can’t stay there forever.
Our children can’t wait for us to be “ready.” In fact, many times I feel I am never completely ready for each new challenge, but with time I’ve learned to handle them better. We can redirect our emotions toward the positive, into actions that truly impact our children’s lives: researching, seeking therapies, surrounding ourselves with support, and giving them the care they need.
It is better to invest our energy in that than to remain trapped in pain. Family resilience is not about denying what hurts but transforming it into love and action.
6. Professional Support
If you feel like you can’t get out of the pit of fear or sadness, seek help. I’ve counted on the guidance of a psychologist friend who, despite the distance, has always given me perspective.
Sometimes we don’t realize that being sad all the time or feeling strong emotions for a prolonged period —to the point that they affect our daily activities— can be a sign that something is happening to us.
That’s why it’s necessary to talk, to express how we feel, maybe with a spouse or a trusted family member, but ideally also to seek professional help. This doesn’t mean you’re broken, but rather the opposite: that you love yourself enough to recognize that you need some support. With some therapy, exercises, or tools, you can greatly change your outlook and emotions.
It has happened to me that after a session with my psychologist, she helps me see things differently. That outside perspective reminds me what resilience means in practice: not giving up, even when it seems impossible.
7. Spiritual Support
But above all, the most important thing for me has been God. I have learned that these special children are a divine gift, entrusted to us with an eternal purpose. When I humble myself before Him, I find strength, guidance, and peace. With God, it is possible to heal the heart and find hope even in the midst of pain.
Make it a daily habit to cultivate a personal relationship with Him: read uplifting messages, immerse yourself in the Scriptures, sing hymns, serve others, and do things that allow you to feel His presence in your life. You’ll see how, with God by your side, challenges become more bearable and how everything becomes possible. With Him, each day is easier.
Faith has taught me that family resilience is also strengthened when God is at the center of the home.
Conclusion: From Fear to Hope with Resilience
Receiving a diagnosis is hard, but it is also the beginning of a journey. My son Moroni has taught me that resilience exists from the very first days of life. With a diagnosis in hand, you have a map; with professional support, you have tools; and with God, you have the strength to move forward.
You are not alone. When you understand what resilience means, you discover that it is possible to transform fear into hope. And when lived as a family, family resilience becomes a gift that sustains, unites, and gives purpose to every step.