I realised what true fatherhood means after my son had a rare disease diagnosed

Nothing prepares you for being a father. People will tell you this, but you won’t believe them. I am telling you, believe them. You can get all the advice in the world, download all the apps in the app store, read all the books. Nothing prepares you.

You have to try, of course. Attempting to be prepared is your first job as a father. While my wife was pregnant, one form of preparation was a series of online hypnobirthing classes given by an overly enthusiastic English woman from the sofa in her front room. The classes sounded a bit unhinged at first, but I decided to take them seriously. I eventually started to find the classes relaxing. They were doing a good job building up the illusion that I was ready to be a father.

Then came a hot day in October last year. Our son’s birth was a month away. We headed into the hospital in Dubai Hills for my wife’s last scheduled scan. As we walked past the palm trees and water feature outside I thought what I always thought: “This place looks much more like a hotel than a hospital.”

When the doctor started scanning, she looked at my wife with a touch of confusion. “You’re in labour,” she said. “You’re having your baby today.” My first response was to blurt out that I hadn’t finished watching the hypnobirthing videos. The panic was setting in quickly. Nothing prepares you for being a father.

We had such meticulous plans, but now I was rushing home alone to find our hospital bag and the car seat I’d been avoiding installing. I realised this was the last time I’d drive while not being a father. In that frazzled moment, I understood that this was going to be a lot of what being a dad is – a constant state of joy interlaced with terror.

No one tells you how terrifying it is when you first take your newborn out of the hospital. He’s yours now. There is no building, no institution around you to keep him safe. That’s your job now.

When you get home with your child for the first time, the house feels different. It feels dangerous, you look at objects and wonder if they’re safe for your child. Nothing will be the same again. Even the cat sitting and watching at the top of the stairs as we arrive knows her life will never be the same.

The first days, weeks, months are pure chaos. It is like a reality series where you are set tasks every hour, and the reward is you get a few hours of sleep, only to be woken up and given more new tasks. This phase made me realise that no one knows what they’re doing on this planet. We’re all just winging it, hoping for the best. I learnt a great deal about patience and empathy during this phase, though, and "everyone’s doing what they can", is my response to most situations now.

My son was born last October, and it is impossible to dissociate that from how difficult a year it has been to be an Arab father. My son was born days after the Israeli war on Gaza. A disproportionate number of its victims have been children. I see my son’s face in all their faces. This is a terror I never thought I’d have to live with. Like millions of Arabs I have learnt that there is a potential tragedy in bringing an Arab child into the world. I fight this thought within me every minute of every day. I remind myself that my child brings only joy into this world.

When my son was born, I saw something in the delivery room that I will never be able to explain. I saw all my ancestors in his face. And not in an “Oh, Dia reminds me a bit of his uncle Mounir” kind of way, but something more primordial. Like a thousand ancestors parading across his face. I mean, it could have been the emotions and sleep deprivation, but in that moment I learnt just how rooted we are.

After years of downloading apps and forcing myself to find five minutes in a day to "meditate", I finally learnt what mindfulness was. All it took was having a child to really slow down and be intentional about witnessing the world. My morning walk with Dia is a ritual I cherish – we stop and watch the flowers blossoming, we greet every stray cat. When we get home, we read a page out of my Daily Dad book, then we read one of his. He’s much more interested in his books, I’m happy to report.

As he turned six months, Dia got sick. And the rituals took a backseat for a bit. At first it was annoying, he was covered in a rash. We Googled it. Never Google anything medical, they say. So I downplayed what I read. Then his eyes turned red. Then his fever shot through the roof. We rushed him to the emergency room in the middle of the night.

You learn how to find the fastest way to the emergency room as a first-time parent. For the next week we’d be in and out of hospital. He’d get better, then he’d get worse again. Doctors and nurses scoured through his chubby arms and legs looking for veins he didn’t have yet to draw blood to run tests. Machines beeped and booped, we didn’t sleep for days.

We alternated between emergency room visits and overnight stays. Nothing was working. At one point, his fever having been constant for nearly 10 days, the doctors told us we needed to consider a condition that had been previously brought up but dismissed, as his fever had receded for a day: Kawasaki disease. It’s a relatively rare condition that causes damage to the heart and blood vessels.

After 10 days of confusion and panic, a diagnosis was a relief and a heartbreak. An echocardiogram showed that two arteries were inflamed and that he’d experienced an aneurysm. I would just sit in his hospital room Googling the condition and sobbing. Now the doctors had to find veins, the only treatment was a 12-hour intravenous dose of immunoglobulin. I really hope no one ever has to see their child try to play while they have two IV lines coming out of their arms.

When Dia was born, our world shrank to the size of our family and close friends. It’s to be expected – you don’t have much time for anything beyond a tight circle of love and community. When Dia got sick, our world shrank to the contours of his tiny body. I promise you, not a single thing outside of that body matters when your child is sick.

In those difficult weeks of illness and the months of recovery afterwards – planning our days around the doses of aspirin we had to give him to keep his blood thin enough to avoid clots – I learnt I couldn't live without my son. The thought would enter my mind fleetingly – what if doctors had missed the signs, what if my wife Nour hadn’t followed her intuition and insisted something was wrong with him. It turns out, he had an atypical Kawasaki case, which has now been submitted to a medical journal.

It’s too much to bear, the kind of love you have for your child. That joy interlaced with terror, nothing prepares you for it. But one thing is certain, I have learnt that each turn of a page in a book we’ve read a hundred times is a blessing. And I will never take our morning walks for granted as long as I’m lucky enough to be in Dia’s life.

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