Nothing prepared me for my son's death – but I made sure he lived life

It was 11 pm on September 23, 2020. Silence filled the air. There was nothing to say, just shock.

We sat in our dark sitting room. 

‘It doesn’t feel real’ were the only words I could muster up each time my husband would try to talk. 

I am the mother of three boys. My eldest son, Ethan, had passed away suddenly earlier that day. 

He was 18 years old.  

That evening, I relived the day repeatedly in my head as my husband made endless cups of tea and tried his best to sit in the sadness of it all with me. But there was no comfort to be found. We both had lived through the worst day of our lives. 

We spoke in broken sentences, neither of us listening to the other. We cried over and over. 

I remember staring out at our back garden, looking at the night sky. The vastness of the never-ending dark sky felt like a reflection of my grief. 

For the first time in my life, I wanted to be up there, up there somewhere in the sky. Wherever my boy was, I wanted to be there too. 

The stars made me angry; how dare they shine on this night. My anger quickly turned to sadness and I could hear his little voice singing. ‘Twinkle twinkle, little star.’

I stood watching the night sky, looking for something, anything to tell me that he was with me. I began to hum the tune, as I felt my heart sink deeper and deeper into my body.

That same sadness is still with me today. Grief never ends.

The night we lost Ethan, we lay over the bed covers, but sleep did not come. How could it? The silence was deafening; the only time I had heard that kind of silence was when our son was diagnosed over 10 years previously. 

‘Hunter Syndrome’, the doctor had repeated, because it didn’t sink in the first time. He explained that Ethan was missing a teeny tiny enzyme, which was responsible for removing waste material from every cell in his body. Without this enzyme the waste would build up causing irreparable damage to his body and mind. 

My son was five at this point and we cried once the doctor had finished explaining what this cruel condition planned to do to our whirlwind of a boy. 

The words ‘life limiting’, ‘no cure’, ‘nothing we can do’ floated above my head as the room grew darker with each word uttered from his mouth. I remembered that heartbreak. I remembered the silence. I was thankful Ethan was not with us in the room, I am not sure how he would have responded seeing both of his parents crumble before his eyes. 

I thought that was the toughest, most heart wrenching day of our lives but now I could see how wrong I was. Never getting to hold, kiss, play with Ethan ever again is still something I struggle with today. I cannot get my heart to accept that my little boy isn’t here with us. I would give the world to have him here again.

The night we lost our darling son, unable to sleep, we made our way back down the stairs to sit at the table for no reason other than to sit there. 

Watching the sunrise gave me chills. It wasn’t a calming, beautiful, wondrous thing. It felt like a betrayal. How can the night become the day when our world is gone? 

I was annoyed at the birds, the gentle breeze and the cloudless sky. I reached over to pull the curtains when I spotted two little robins perched on the windowsill. I froze. Was that a sign? 

I began to Google all I could about the little birds. Grief will make you look into the spiritual world like an addict looking for a hit. I watched the robins until they flew away towards the morning sun.

The next day, we drank coffee. My phone buzzed, flashing a stream of sympathy messages across my screen. It’s true what they say – bad news travels fast. I put my phone face down on the table, hoping the buzzing would soon stop. I didn’t want to hear the ‘I’m sorrys’ or accept the offers of help, or worse still, deal with someone else’s shock at what had happened. 

I didn’t want any of it. I just wanted the outside world to disappear, dissolve and leave me alone. 

I recalled the specialist telling us all about anticipatory grief; raising a child you know will have a shorter life. I never really thought of Ethan as sick. Yes, we went to and from hospital appointments but he wasn’t a sick child. 

I decided early on in Ethan’s diagnosis that my job was unimportant and that I would spend Ethan’s life looking after Ethan. 

We focused on Ethan living. We made as many memories and had as many experiences as we could with Ethan. 

Looking back now, I can say with confidence that our boy lived. 

We knew it was happening, we acknowledged it when we had to but for the most part, we just moved forward into a ‘new normal’ every time Ethan declined. 

Ethan was a chatty, funny boy who loved his food .The glint in his eyes told even strangers he was full of mischief and fun. He was a singer, a dancer, a rugby player and a great swimmer and cyclist. Slowly Ethan lost these abilities. 

His declines in abilities were slow and thankfully not as obvious as losing his ability to walk and swallow. 

As Ethan aged it was obvious that the syndrome was doing to him what the doctors told us it would. Soon, a common cold became a danger for Ethan due to Hunter Syndrome affecting every part of his body and mind. His organs were enlarged and caused him some discomfort. His joints were stiff and sore and his little mind began to forget simple things like how to swallow. 

Throughout all this and an awful lot more, our Ethan always smiled and laughed with us. He gave us the strength we needed to watch this syndrome take him from us bit by bit.

And that’s why I tried so hard not to grieve Ethan while he was still with us. 

But nothing prepares you for losing a child. After we lost him, I sat with this raw intimate grief and nowhere to hide. I had no choice but to let myself feel this pain. No amount of preparation could have eased this pain. 

Grief often feels like an out-of-body experience; I felt for the first few weeks after Ethan passed that this was happening to someone else; I was merely watching bits of it unfold. 

Family and friends wanted to come to the house to pay their respects, but I wasn’t ready. I wasn’t ready to hear people tell me how sorry they were or listen to platitudes or worse still, comfort them. I wanted the world to stop. I didn’t want the reality of what happened to be talked about over and over.

I pictured him watching us get the house ready for visitors, sitting on his ‘throne’.

By age 16, Ethan had needed a special chair to support him in all the right places, making it the throne he deserved. 

He would sit there waving his curled hands and vocalising his excitement at us, his ‘staff’, cleaning the house in preparation for guests. He amazed us, as he always found a different way to communicate with us. Years beforehand he was a motor mouth, he was the kind of kid who would talk non stop.

As he aged, Hunter Syndrome took random words from him until there were no more words to take and when Ethan reached that stage, he found other ways to explain to us what he needed or wanted. He’d take us by the hand to point to the item he wanted if the word would not form in his mind or through his mouth. Our boy was simply amazing. 

As our first morning without Ethan drew on, I could hear my husband speaking in hushed tones in the kitchen to our two younger sons, who wanted to know what would happen next. When would they see their brother again, and would he be coming home in a coffin as their uncle had? The tears drenched my face as I stifled my scream. 

It’s been 20 months since I last held my beautiful boy, Ethan. I don’t know how that time has passed. 

Ethan may be gone but he will never be forgotten. Ethan will live forever in us. I feared Ethan would be forgotten as when time moves forward people seem to be afraid to bring his name up. I wanted to ensure a way that Ethan’s name would be said over and over and his story would be told over and over. Through my writings, Ethan lives on.

I paint Ethan’s favourite characters on rocks, so his love of film, cartoons and music live on too. I spend time out on the beach Ethan loved and I carefully choose which rocks to paint at home. I place these rocks wherever I travel and give them to friends and family. I call them Ethan Rocks.

I get a sense of Ethan around me when I do this, and leave them for others to discover. I know they make people smile and, in some small way, it brings comfort to my heart that – through me – Ethan is still making others happy. 

I think that is the only thing any of us can do with the weight of our grief is learn to hold it, and remember all the love – or ‘blove’ – as Ethan liked to call it.

The loss of a child is something no parent should have to live through but sadly many do. 

Perhaps by acknowledging this unbearable pain we can begin to talk about life after child loss and parents and families can come together to openly talk about their child.

I am Ethan’s mom. I will always be Ethan’s mom. There is nothing more comforting to me than hearing people say Ethan’s name and take a few minutes to remember him.

Ethan lived. Now, I must learn to live without him, it’s a task no parent should have to face.

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