Father’s Day takes on a new meaning when your child has died

Pictured: Daniel and his son Marcus, who died in 2013.

If there’s a piece of advice Daniel would pass onto all dads this Father’s Day, it’s to be present and to spend as much time with your kids as you can.

“You can always get more money, but you can’t get more time with your kids,” he says.

And the Dad of Marcus and Molly knows this first-hand. At aged two his son was diagnosed with Batten Disease, a rare and fatal disorder of the nervous system.

It was a diagnosis that understandably devastated him and his wife.

“The grief started the instant we were told. When you get a diagnosis like that, it’s the loss of the future you thought you had with your child, it’s the loss of what you’d planned. You’re left with many unanswered questions, like, what would his favourite movie had been, would he have gotten married, what career would he have chosen,” Daniel said.

Daniel says following the diagnosis, and knowing what the disease does to little bodies, meant giving Marcus a quality of life was his priority.

“Kids with this disease tend to get worse and worse, they end up in constant pain and they can’t do anything. I didn’t want that for Marcus. I wanted him to be the happy, cheeky little boy he was for as long as he could,” Daniel said.

Marcus died in 2013 at six years of age, and Daniel says the impact and process that follows is completely unique to each person.

“I guess I took on the typical male role of pushing all my feelings down. I was drinking too much to the point where I realised, I can’t keep doing this. For the longest time, I was just numb, and it takes a lot of willpower to come out of that, which is why I turned to running and entered the Very Special Kids Treadmill Challenge. Running is a completely mindless activity that focusses on breathing, and it helps me switch my brain off,” Daniel said.

Since Marcus died, he’s noticed certain patterns of behaviour towards childhood death that he’d like to see changed.

“The most common thing people say is, you’re so brave. And that one really annoys me because I’m not brave. When you’re in this situation you don’t get a choice, but you do anything for your child. Anyone can do it, that’s what parents do, even when you’re breaking inside,” he said.

Daniel points out it’s also what people say to comfort him that often isn’t helpful either.

“When Marcus died, a lady told me he’s gone to a better place. I appreciate the intention behind that, but it’s not helpful because I’d rather he was here with us. My advice to anyone struggling with what to say in those times is just to be present, use his name, say it sucks and just say I’m here for you,” Daniel said.

September 4 is the anniversary of Marcus’ death, which is closely followed by Father’s Day. Daniel says the lead-up to these days are tough, but it’s also the time of year where he just takes time out for himself and does what he needs to do.

“I find myself not following my own advice at this time of year by throwing myself into work. I find the build-up to these days harder than the actual day; the anticipation is actually worse. Each year I just play it by ear, but Father’s Day is definitely a day I take for myself and do what I need to do,” Daniel said.

“It’s not normal to bury your child in Australian society, and I know it’s a tough topic for many to talk about it, but we do need to start normalising the conversation,” he added.

Daniel is a member of Very Special Kids Family Advisory Committee, a committee that ensures those who we support are at the heart of what we do, and he also utilises our family support services.