Edgar

[Translated copy]

Life began sunny, without a cloud in the sky. The future lay wide open and anything seemed possible. On 1 April 1994, Annelies and I got married. We were young, happy and full of dreams. A world full of possibilities lay ahead of us. We looked forward to a beautiful life together, a family, warmth and happiness. That happiness grew even bigger when our son Koen was born on 9 February 1996. We held him proudly, our first child, our miracle. We savoured the small moments – his first smile, his first little sounds, the love that suddenly became tangible.

But soon, in his first year of life, we noticed that not everything came naturally to him. While other children developed at a certain pace, Koen fell behind. At first you tell yourself: every child does things in their own way. But as time went on, the questions came. Examinations followed. A test here, an appointment there. From one hospital to another, hoping again and again for clarity. What was wrong with Koen? Why was his development different?

After examinations by paediatrician dr. Lincke, we finally got an answer. Koen had Myotonic Dystrophy, MD for short. A muscle disease we had never heard of at that point. Alongside MD, it turned out Koen was also autistic and had an intellectual disability. Suddenly our world stood still. What did this disease mean? What would his future look like? And how were we supposed to deal with this?

As if that news wasn’t hard enough already, it later turned out that MD is hereditary. Annelies had the same disease, but in a different form. That realisation hit hard. Suddenly certain pieces of the puzzle fell into place, but at the same time it brought new worries with it. The life that had begun so carefree slowly turned into a life full of responsibility, uncertainty and constant care.

Yet there was always love and hope. In the year 2000 we were expecting a daughter. Tests showed that she didn’t have MD. Carefully, we dared to dream again of a future without illness and disability. But fate decided otherwise. Through a miscarriage, we never got to meet her. That loss, too, left deep scars. A child who was wanted, but who never saw the light of day.

On 23 July 2002 our second son was born: Tom. Once again there was the love and pride every parent feels. But once again, the harsh reality came later. Tom also turned out to have MD, along with an intellectual disability. We faced the same challenges all over again. Two children with a muscle disease, two boys who needed extra care, two children who were completely dependent on the love and dedication of their parents.

For me, as a father and husband, that meant a life of worry. Worry about their health, their future, their happiness. Sometimes it felt like everything revolved around appointments, examinations, aids and uncertainties. But one thing always remained central: making sure Koen and Tom could enjoy life. Not looking at what wasn’t possible, but at what was.

And so we made memories. We went to the Efteling, where the boys enjoyed the fairy tales and rides. To Blijdorp Zoo, where the animals brought wonder again and again. We took part in activities run by Hoogvliegers and Spieren voor Spieren. Little holidays and weekends away became precious moments of relaxation and happiness. Of course, it wasn’t always easy.

Behind every outing lay preparation, tension and often exhaustion too. But the smiles of Koen and Tom made it all worthwhile.

Living with MD means constantly adapting. The disease affects muscles, energy, and ultimately the whole of daily life. Still, we always tried to stay positive. Not dwelling on limitations, but looking for possibilities. Sometimes that was easier than other times. There were moments of sadness, anger and helplessness. But also moments of warmth, humour and closeness.

Then came 11 December 2023. The day I had, deep down, always been afraid of. The day my greatest fear became reality. Koen died.

It was an ordinary morning. He was still in bed. I heard him switch on his television, like so often before. An everyday sound, nothing out of the ordinary. And then… silence. Koen passed peacefully.

Words can barely describe what a loss like that does to a parent. Losing a child goes against everything. It leaves behind an emptiness that is never fully filled again. Koen wasn’t just our son, he was a part of our life, of our family, of who we are. His presence filled the house – his laugh, his habits, his way of being. And suddenly there was the silence.

Still, we have to carry on. However hard that sometimes is. By now we’ve been living as the three of us again for a few years – Annelies, Tom and me. Missing Koen is present every day, in small moments and big memories. But we also try to keep enjoying life, exactly as we always have. Not forgetting what is no longer there, but cherishing what was, and what still is.

MD has shaped our life, there’s no getting around that. It brought sorrow, worry and loss. But it also brought closeness, love and an enormous appreciation for the little things in life. We have learned not to look for happiness in perfection, but in moments together. A laugh, a day out, a good day without worries, a memory that lives on.

Koen will always be part of our family. He lives on in our memories, in stories, in photos, and above all in our hearts. And despite everything, we keep going. Step by step. With grief, but also with gratitude for everything we got to experience together.