'My son won't start school next week. He passed away before he got the chance.'

It started with a pregnancy. I took a simple test and gained that glorious, secret, life-changing news and my world changed in an instant. Like others who have experienced it, my mind snowballed with the dream of all the things that would come. A beautiful big belly, swollen feet, a perfectly neutral nursery with native Australian animal wallpaper! The birth, the first smile, the tiny hands, the whole world - it was mine. And I got just that. 

After 40 weeks he joined us. It was the most arduous 38 hours I have ever endured, but he arrived safely. Sebastian, Seb, my sweet Sebby, he was 3.1kg and 51cm of perfect. 

He thrived, and grew through all the milestones - the nasty first 12 weeks, the first giggles, exploring food, people, and the world around him. He was on all fours and ready to crawl his way to mischief. With a wicked grin and a glint in his eye, my baby boy was going places. 

But now he is not. He died when he was 10 months old. The dream was shattered.   

Edwina when pregnant with Seb. Image: Supplied.

Four years on, a huge milestone approaches. The day he was supposed to start 'big school'. He is supposed to start kindergarten next week. Our family would be joining the primary school community for the first time. This milestone is one that I have thought about every day since I first saw those two lines on a stick five years ago. 

But we didn’t get the early education graduation photo; we aren’t visiting Shoes & Sox for the first time; we don’t own the uniform, the giant bag. His cousins, Isla and Luca, having just finished their first year, didn’t get to pass on their newfound knowledge over the Christmas break.

All that is gone. Like so many other moments that have been taken from me. From Seb.

Time moves forward. For everyone else.

One of the many misfortunes of losing a young child is that, often, you are surrounded by people who have children the same age. Every day, we physically watch what could have been when we look around us. In real life, and also on Instagram, I see those other five-year-olds thrive. Their birthdays roll on, those milestones get reached. Seb’s don’t.

Our house is one block from the local school Seb should be barrelling into. The excited chatter of a whole new year, a whole new world, for many will drift up our driveway every morning and every afternoon. But it won’t include Seb’s voice.

Next week I will watch as those who would be Seb’s friends: Zac, Henry, Hannah, Quinn, Laney, Jed, Havana, Zoe, Zach, Ivy, Freddie, Jamie and Poppy, take their first steps into the unknown grounds of Sydney’s public schools. I am so proud to watch these little people who I adore taking these big first steps. But my heart still aches, along with many other grieving parents. That pain is not jealousy. It’s reality. One we face every day.

Edwina and Seb (centre) on Mother's Day in 2018 with cousins and aunties. Image: Supplied. 

Milestones happen every day in grief.

These milestones hurt a little more, but every day the loss is real for us. After the anticipation of a milestone passes, we remember this is just another day. My day won’t be worse on Monday than the mums and dads facing a child entering year two or year five; or high school, university, or their child’s first day of work, or any day, when their child is no longer here. 

In fact, my day isn’t worse today than it is tomorrow or yesterday. They are all worse.

Grief doesn’t fade. It is a deafening silence inside us that others cannot hear. A silence that is with us every moment, that we have to attempt to embrace. Because it’s here, inside us, forever.

I might look stoic in its clutches, but my grief has become a lifelong companion. It's embrace first wrapped me up when my mum died when I was four. I was unaware that this companion became so near at that point, but then I felt its presence deeply after I lost my dad at 21; and it most definitely saturated me when my beloved Mardi (grandmother) died in 2015. 

Having it come hurtling back to the surface when Seb died felt like my life had become a cruel game where I wasn’t aware of the rules. Where did I misstep? 

Listen to Samuel Johnson talk about grief on No Filter. Post continues below.

Grief can suffocate, it’s hard and exhausting and it can derail anyone. There is no shame in that. But with time, we can recognise it as an attachment of our love for someone, and we can learn not to be afraid of it. It takes time, but we can learn.

In those first few moments, I of course asked, "Why me?" Why have all these people left me here, to suffer here, without them?

But my "why me" has now become "thank goodness". Thank goodness my Sebby landed softly, in the arms of his grandparents and great grandparents. 

Thank goodness he is not alone.

His little friend Reef once asked, "Who puts Seb’s pyjamas out for him each night?", and my beautiful friend Kim could confidently tell him that his Nanna, my mum, did. There is great comfort in these beliefs.

Seb's siblings Dash and Elodie celebrating Seb's fifth birthday in their garden next to his tree. Image: Supplied. 

Say their name.

My time will come next year though. My two boys were born just 15 months apart. So this time next January, I will be there as our second son Dash strides proudly through the gates and makes these school dreams a reality for our family. 

But that will always feel one year too late.

Of course “a parent should not outlive a child” because adults comprehend that this pain will be with us forever. Seb’s short life is a deep scar intertwined with my own being that won’t ever heal. 

Any parent who is grieving a child is in pain. It might not be visible but it is still there. Always. 

We are so aware that our child isn’t here. You bringing it up doesn’t remind us or make us sad; It makes us feel hope. That you remember. 

We need you to remember. 

Death is not the most important thing about these children. Their life. Their simple existence is. 

I am one of the lucky ones - in this modern age, I can revisit his existence. I can hear his voice and watch his sparkling eyes. Many who grieve losses from long ago cannot do that. That’s why you must say their names to us. To show us that those memories are real, that we didn’t only dream that joy. 

I look at you all, the other mums and dads whose babies have made it. You don’t even know it, but it is a lottery, and you won. Next week, I can watch along with pride and joy with you, but utter devastation for me, for us. Those who ‘lost’ their child. 

We sit here on the sidelines cheering your little people on. Please don’t forget to keep cheering ours on too.

Edwina Symonds is a mother of three from the Northern Beaches in Sydney. After her first son Sebastian died in 2018, she has become an advocate for Organ Donation and a Peer Support volunteer with Red Nose Australia. She writes about her son in the hope that other grieving parents can feel less alone. She shares resources for grieving parents at The Griefy Way.

If this article has raised any issues for you or you would like further support, please reach out to Red Nose Australia or call the 24-hour support line at 1300 308 307.

Feature Image: Supplied.