Our son Toby was born in February 2016. I'd been through the nappies, sleepless nights, and baby milestones before. So knew what to expect. But nothing prepares you for hearing the word "meningitis" one day after your child is born.
Toby became unwell shortly after birth. Within hours, he was in intensive care and diagnosed with bacterial meningitis. At the same time, my wife developed sepsis following an emergency C-section and was rushed into surgery. In the space of an hour, I went from choosing baby bottles to watching two members of my family being stabilised by two separate teams.
It isn't easy to describe what that does to you. I remember sitting alone on a ward full of smiling, exhausted parents cradling their newborns, while my son fought for his life behind a curtain. The contrast was unbearable. No one said anything, but I could feel the looks — quiet sympathy mixed with the silent relief that it wasn't happening to them.
Toby spent weeks in care, and Sarah pulled through too. When we finally came home, we felt lucky just to be together. We knew he might have a difficult start, but we believed that with time, things would settle.
For a while, things seemed okay. Toby was a calm baby. Happy, cuddly, full of gentle smiles. But as the months passed, we noticed he wasn't meeting the developmental milestones you'd see with other children. He wasn't babbling. He wasn't crawling. And later, he wasn't speaking.
At first, we held onto the usual reassurances, "every child develops at their own pace," "boys are often slower," "Einstein didn't talk until he was four." But deep down, we knew.
The first formal diagnosis was global developmental delay. It explained a lot, but it didn't come with a roadmap. There was no timeline, no clear outcome. Just wait, watch, hope. Then, as we began adjusting to that reality, epilepsy entered the picture. Sudden seizures. More hospital visits. New fears layered on top of old ones.
There was no single turning point, no moment where someone told us exactly what life would look like. Instead, it was a slow accumulation of moments: forms to fill in, professionals using careful language, our growing realisation that this wasn't a short-term detour. This was the path.
Today, Toby is nine years old. He is non-verbal, lives with epilepsy, and has significant developmental needs. But those facts don't capture who he is.
Toby is full of love, joy and personality. He's funny, expressive, and endlessly curious. He doesn't speak, but he makes himself understood through gestures, facial expressions, occasional words, and his own way of showing you exactly what he wants. He's sharp in his own way, and surprisingly resourceful.
He loves the outdoors. He's happiest when he's in the garden, covered in mud, carrying a stick and an old tool he probably shouldn't be carrying. He doesn't care for toys; he wants things. Broken drills. Cables. Boxes. If he's got a socket wrench and some space to explore, he's in his element.
This is how Toby communicates. Not through sentences, but through action. Through focus. Through joy.
Parenting a child with complex needs is a different kind of journey. The grief isn't always loud. Sometimes it's quiet. You find yourself grieving the small things: conversations you'll never have, jokes he won't tell, the future you imagined slowly dissolving. It's not the kind of grief people notice. There's no ceremony for it. Just early mornings, long forms, and the invisible weight of planning for a child who may never be independent.
But there's another side to it.
As a family, we've grown stronger. We have love. His older siblings are fiercely protective of him, like bodyguards with homework. Sarah, my wife, is the most resilient person I've ever known. We've adapted. We've built routines. We've found true joy in small things, the kind of joy you only see when life slows down enough to notice it.
There are difficult days. Frustrating days. Days where nothing works and the exhaustion creeps into everything. But then there are moments that catch you off guard, the way he smiles when he builds something, the pride he shows when he fixes something himself, the way he lights up when someone understands him.
He may not speak with words, but he has never once struggled to express love.
We tried mainstream school at first. Like many parents, we hoped it would work. We believed in inclusion. But it quickly became clear that the environment wasn't built for him. It moved too fast, offered too little space. Eventually, we made the decision to move him to a specialist setting, and it was the best decision we ever made. For the first time, he was understood without having to explain himself.
The school staff didn't just tolerate his differences. They worked with them. And he started to thrive.
Looking back, meningitis didn't just affect Toby. It reshaped all of us. It forced us to let go of who we thought we were supposed to be, and make space for who we actually are. And as strange as it might sound, there's something beautiful in that.
To anyone reading this who is just beginning their journey: I won't pretend it's easy. It's not. It will change you. It will challenge you. You will face things you didn't think you could carry.
But you'll also find strength you didn't know you had. You'll build a new rhythm. You'll see joy in places others miss. And you'll love more fiercely than you ever thought possible.
It's not the life we planned. But it's ours. And it matters.
- James Gott, Toby's Dad
