By Tamlyn Moosa 
For nearly a year, I couldn’t say it out loud. I couldn’t speak to friends or family about it. Simply thinking about the word turned it into a heavy concrete slab that I couldn’t pick up. I couldn’t understand the physiological or philosophical cause behind why my daughter happened to have been selected to receive an epilepsy diagnosis. But it happened. Epilepsy crept into our lives like a vine choking a healthy wall, finding ways to break it down brick by brick. It felt, truly, like the home we had built became undone in a matter of minutes. The house began to shake, and life as we knew it seized.
When she was younger, I was stunned by how brightly she shone. All parents say it about their children, don’t they? Because they aren’t accustomed to seeing such unadulterated light in the way they see it in their children. Suddenly, we understand God’s unconditional love. She started going to a nursery school twice a week for four hours around the age of two and a half. By the age of four, she was begging to go full-time and to stay longer so that she could play more. Her teachers were never short of compliments and always void of complaints. We would receive feedback that she would zone out in class every so often, but would perform every task to near perfection.
The day before her seizure, her teacher mentioned that she had been falling a lot throughout the day in random moments. An hour before her seizure, her piano teacher noted that she was frantically active and did not exhibit the same calm she usually does, but within minutes, she was exhausted and lay down for a nap. I ran upstairs to exchange my work clothes for pajamas, and when I returned to where my daughter was napping alongside her brother, no more than 10 minutes later, I discovered that she was seizing. Seconds passed before I realised she was in the midst of an earth-moving moment. When she tried and failed to speak, I realised that my daughter’s world was changing.
I prayed a thousand words as I watched my child’s eyes roll backward while she foamed at the mouth in the five-minute drive to the hospital. There are a few moments in life that drive you into a state of shock so phenomenal you are kicked out of all your senses. This was one of them. By the time we reached the hospital, she was still stiff and barely lucid. Then suddenly, she came to. She sat up like a wrecking ball hadn’t just smashed into the guts of her father and me. She sat up as if she had been renewed and as if the last 15 minutes hadn’t happened. And to this, I was sure I was left Where the Wild Things were. Nothing made sense.
While the days after felt like they were sewn to me, the threads were undoing me daily as each day faded into the next, awaiting the results of the EEG. But in all of this, the core event was not what pulled the hem off. It was the months to come. The young girl who we knew to love school, friends, and extracurricular activities at the young, inexperienced age of four, slowly evolved into someone we knew was losing parts of herself. It was as if she mourned that loss of self because on the days she would usually feel excited, she would suddenly break down into tears for reasons still unknown. She started to become immensely particular about her hair, especially. Nothing in her little life was allowed to be out of place, or she would begin to haemorrhage all self-control. And no one speaks about the psychological part of epilepsy. That feels like a hidden bit of the puzzle, and until the piece is found, the puzzle just doesn’t reach completion.
We were told the side effects of the medication would wear off, but they seemed to sink into her skin, and she would wear those side effects as if they were her. Family and friends noticed her dimming, and we couldn’t find the words to explain that she was just hurting. But the side effects were not her; she was still hidden beneath the debris of the trial she was facing. My baby would burst into tears at random moments of the day and hug herself. I couldn’t believe her cross was so heavy at such a young age. Hopeless and confused, what more was there to do but hold her and assure her that in her darkest hour, I would try to be her light, as she is mine.
The light I was giving her was somehow exhausted in me. When your child receives an epilepsy diagnosis, they don’t give you the number of a psychologist, pastor, priest, or friend. They send you on your way to figure out how to start building the house again. But with gaps this time. I could see the weight of every brick pile up on my husband’s shoulders. He tried to fix the outside, and I tried to fix the inside, but it felt like the cracks kept showing. And neither of us knew how to speak about it. So he covered his grief with anger, and I covered mine with indifference. We didn’t know how to speak, and even as I write this, with my little loves beside me, I cry quietly so the weight I carry doesn’t add to his heavy load. How do you cry into a broken vessel? It’s no use, the tears will not hold. They will simply continue to pour out the broken ends.
The paranoia is immense. Every twitch, every shake, every blank stare takes me back to the 23rd of April in 2025. I don’t believe I have slept since. The guilt is unhinged. It tries to swing me from pillar to post. I developed chronic migraine syndrome during my pregnancy and blamed my illness for unraveling my daughter.
But I see her when she is unguarded. When she feels safe and like mommy is backing her. Suddenly, that light turns back on, and she becomes the beacon of hope she’s always been. It reminds me that, despite what could have been life-threatening, it was life-altering instead. The same Lord who is her light is the Lord who carried her through a seizure with a 2-7 percent mortality rate. A small number until your child is a factor, then it feels like the largest set of numbers you’ve ever seen. Risks and complications hide in the “could have” and “could be” that are still too difficult to speak about. On a journey where knowledge and support about this becomes hard to find, I find it is not in the perfection of the possible outcome, but in the knowing others are experiencing the same unravelling and finding the courage to stitch it all back together breath-by-breath.
We are to guard our children. That doesn’t mean we are to prevent them from feeling life’s jagged edges; it means we ought to teach them to become goldsmiths and glass blowers with the shards left behind. Then we guard them from vulnerability by guiding them to their strength during days that demand weakness. This is what we deal with today. I hold faith that in time, the vine produces fine wine and the house becomes a palace that holds the excellency of a renewed faith. We are not bound by epilepsy; we are freed by His authority, even in the midst of this wilderness.
by Sarah McPherson 
by Sarah Lango 
