The Day Everything Changed
There’s a moment that separates “before” and “after” in every parent’s life when their child faces a serious illness or medical procedure. For me, that moment came with my son’s epilepsy diagnosis and the rapid decision to undergo brain surgery. His diagnosis came suddenly; he had had what I had thought to be nightmares every night for several months. At one point I realized that he also stopped breathing whenever they occured. His doctor told me it was caused by “narrow airways”. I believed this until they started happening during daytime. And quickly escalated from 1/day and 2-3 at night, to 4 during the day, to 12 and once he was put on medication, they escalated. A few days later, he was hospitalized. And another week or two later, he was having up to 70 seizures a day. And soon it was decided by his doctors that he was a candidate for epilepsy surgery.
Life as I knew it was paused. My breath became shallow, time bent, and the weight of uncertainty settled in my chest like a stone. I knew nothing would be the same again.
And yet, somehow, I was expected to function—to be strong, composed, nurturing. But how does one mother from a place of such deep fear? How do we show up when we feel like we’re falling apart inside?
This post is for the parents who have walked or are walking that tightrope. This is my truth, and perhaps somewhere within it, you’ll find yours too.
Facing the Unimaginable: The Emotional Toll of a Child’s Surgery
When your child is sick, the emotional terrain is unlike anything you’ve experienced before. You may cycle through terror, guilt, hope, despair, rage, numbness—and often, all within a single hour.
You feel powerless watching your child’s body become the site of clinical attention, needles, machines, and sterile rooms. You second-guess every decision, wondering if you’re making the right choice—because the stakes couldn’t be higher.
I remember looking at my child’s face and thinking: I would give anything to take this pain from you. Anything. I just want to have you back home again, healthy and active as you´ve always been.
No one prepares you for the emotional labor that comes with this journey. The uncertainty of how long this will last. Observing how the many different medications drain your child´s energy, turning them into someone you don´t even recognize. Standing as strong as you can for them while you just want to shut down. And yet—you stay beside them as you do of course because they are your child and you love them more than anything. Day in and day out.
The Fear That Grips Your Heart: Naming and Honoring Your Emotions
You are not weak for being afraid. You are not broken for crying in the bathroom when no one can hear. You are not “too emotional” for feeling devastated.
Fear is not the enemy. Suppressing it is.
What helped me the most was acknowledging my emotions as sacred messengers. I began journaling—not to fix anything, but to witness myself. I let the rage pour out. I let the sorrow take form. I wrote letters to my child, to the universe, to my ancestors. I let it all move through me, because emotions only become toxic when trapped.
Here’s what I know now: The more I honored my fear, the more space I created for love to enter. The more I let myself feel, the more whole I became.
Letting Go of Control: Where Fear Meets Faith
Control is an illusion, and I say that not from a place of theory, but raw experience. I tried to micro-manage every decision, every side effect, every possible outcome. I knew he was in the best professionals´ hands. We live in a country with universal healthcare thankfully, so finances wasn´t going to be an issue either. But life reminded me—gently at first, then louder—that some things are beyond my hands. And knowing that someone was going to open up my little boy´s brain, remove something about 1 cm in size, with the risk of him becoming numb in half his face, having trouble moving on his left side, possibly suffering a stroke, a smaller bleeding or infection…. The thoughts were overwhelming. And still, there was no option to keep trying medications that so clearly weren´t working. And minute by minute, day by day, I saw his quality of life diminishing before my eyes.
Letting go didn’t mean giving up. It meant surrendering to something wiser and larger than my fear.
This is where spiritual trust came in.
Leaning into Spiritual Trust: My Personal Anchor
Whether you call it God, Source, Spirit, the Universe, or simply Love—something within me knew I had to hand it over.
I prayed—sometimes with words, sometimes just through breath. Sometimes I did my best in connecting with a tiny tiny voice inside of me, saying that everything would be alright. It took the upmost trust in recognizing this voice while simultaneously being overwhelmed with emotion of fear.
Spiritual trust didn’t erase my fear, but it gave me the strength to hold it without drowning.
I learned that trust isn’t passive—it’s an active, moment-to-moment choice. Some days, I had to choose it every five minutes. But each time I did, something softened. I found enough stability to get through the day, enough grace to speak kindly to myself.
Building a Support System: You’re Not Meant to Do This Alone
I didn´t have the capacity to reach out to other parents whose children had undergone epilepsy surgery. I had had enough people earlier in the process saying that “everything would be ok” because they knew someone who outgrew their epilepsy. It wasn´t relevant to me, because they were talking about someone else who wasn´t my son. And my son was not doing ok. Far from it.
I started setting up boundaries around the topic. And I started connecting with the spiritual people in my life. Only a small couple of people were able to support my spiritual side during this time.
In addition, I got massive help from my closest family and friends. They would bring meals, help us with our second child and also be emotionally supportive even when I didn’t know what I needed.
I also spoke a lot with nurses who had witnessed positive outcomes in the past.
Community—whether in person or virtual—reminded me that I wasn’t alone in this fight. Others had survived it. Some were still in it with me. And that shared strength became part of my own.
Tiny Miracles and Small Wins: Finding the Light in the Darkness
When life gets heavy, we look for the big miracles. But I found peace in the small ones:
- A hug from the nurses when they recognized my need for it.
- Someone else taking the lead on dealing with booking an appointment with a psychologist
- Hot pre-made meals at the hospital
- Post-surgery I connected with my late mother, and saw her smiling. At that point I started believing everything had gone well
- My son moving his left arm and left eyebrow for the first time post-surgery
- My first walk outside after his surgery and waking up, I found two four-leaf clovers. I tend to find them “everywhere” but this was for me yet another sign from the Universe.
- And the first time my son was allowed into the play room post surgery, I got a drawing template with a horse patterned with four leaf clovers. In addition, the first package of stickers my son received at the hospital post-surgery, also was four leaf clovers.
These small moments were everything. They anchored me when nothing else could. I started a gratitude journal—not to pretend everything was okay, but to notice that life was still offering me beauty.
A Message for the Parent Reading This Right Now
You are doing better than you think. You are holding more than most people will ever understand. You are not expected to be perfect—you are only asked to love your child and be honest with yourself.
If your child is facing surgery, or is already in recovery, let me tell you: You are not weak for being scared. You are not failing because you cried today. You are human. And that is sacred.
You don’t have to know how this ends to take the next step. All you have to do is stay soft inside your strength.
Practices for Inner Peace During Medical Chaos
Here are some practices that helped me ground during the most chaotic moments:
- Five-Second Breathing: Inhale for 5, hold for 5, exhale for 5. Repeat.
- Body Scans: Ground your energy by feeling your feet, your legs, your seat in the chair. Be in your body.
- Visualizations: Picture your child surrounded by healing light, angels, or loved ancestors.
- Spiritual Surrender: Whisper, “I hand this over now.”
- Affirmations:
- “We are safe right now.”
- “I trust life is holding us.”
- “One moment at a time.”
Even just 2 minutes of these practices helped reset my nervous system.
Reflections: What I Know Now That I Didn’t Before
- I always knew that my children were my number one priority. What I didn´t know how not-relevant everything else is. If things are going well outside the health and wellbeing of yourself and your children – congratulations that is a BONUS.
- You can survive more than you think.
- Fear and love can coexist—and often do.
- You don’t need to be fixed. You need to be held. If you have no one around to hold you, offer this to yourself instead. <3
- Trust is not the absence of fear. It is choosing to walk forward with fear in your hand.
- Spiritual connection is real and accessible, even in the most clinical, fluorescent-lit hospital rooms.
- Your child feels your love more than your fear.
From Fear to Faith – The New Chapter
We’re still healing. Recovery isn’t linear. But I’ve entered a new chapter—not just in my child’s life, but in my own.
This is the chapter where I no longer live in hypervigilance. This is the chapter where I trust myself, trust life, and trust the unfolding—even when I don’t understand it. This is the chapter where I honor both my strength and my softness.
And most importantly, this is the chapter where I remember that trust—not control—is my true power.
If you’re a parent navigating this journey, I see you. I honor your tears, your resilience, and your love.
You are not alone. And you are not powerless.
You are the sacred container through which healing flows.
