Alex and her son, Declan, were inseparable. Declan had Duchenne muscular dystrophy and sadly passed away in his much-loved van beside Alex when he was just 24 years old. Alex shares memories of their special bond, how she processed losing her son, and why she started a podcast about grief.
My son died in his beloved van – I’ve turned it into a grief podcast studio as a legacy of love
The everyday moments that mattered most
When people ask me what Declan and I loved doing together, I always smile because the truth is, everything was better when we did it together. It wasn’t just the big moments; it was the small, everyday ones that filled our lives with joy.
Every Sunday, we’d plan our meals for the week. Saturday was always takeaway night, but on Sunday, Dec would hunt down weird and wonderful recipes online. He’d tell me what ingredients we needed, and on Monday we’d head out shopping. It might sound ordinary, but it was us. Cooking, laughing and sharing in those quiet, simple routines.
We were each other’s favourite person. We used to joke that we were like E.T. and Elliott, – we just knew what the other was thinking. We never argued, never got tired of each other’s company. The staff at the hospice said they’d never seen a bond like ours.
Dec’s nurses told me after he passed that he’d always say I did everything better – better toast, better driving better neck massages. (I’m a sports therapist, so I’ll take credit for that one!) But what those words really meant was that he felt safe and loved. At the hospice, he used to tell the carers, “I can’t wait to get home to tell Mum what I’ve done today.”
Dec was always so full of life
Dec was never defined by Duchenne muscular dystrophy. He was diagnosed when he was nearly eight, long after his personality had already bloomed. He was determined to live life fully, and I was determined to help him do just that.
He went to mainstream school and college, and lived a normal, happy life – he just happened to use a wheelchair. He was sharp, hilarious, and full of random facts. You’d want him on your pub quiz team (unless the topic was any sport other than motorsports).
Dec had a calm, gentle soul. I have ADHD myself and always felt like he was the calm to my storm. His biggest love was cars. From toy cars clutched in his little hands to his first Power Rangers motorbike wheelchair, which was instead of him using a manual wheelchair to start with. Cars were his world – Top Gear, The Fast and the Furious, car shows. But his pride and joy was always his van
Our Magical Mystery Tours
Our road trips were full of laughter. Our favourite adventures were the spontaneous ones we called our Magical Mystery Tours. We’d just get in the van, take random lefts and rights, and see where we ended up. No plan, just the two of us exploring the world our own way.
Nobody expected Dec to pass away as quickly as he did. We were on one of our adventures the day he passed away – one last magical mystery tour together.
The van that became Dec’s legacy
Dec always dreamed of modifying a Golf GTI, but being on the Motability scheme meant we weren’t allowed to alter his van. When he was given a short prognosis, though, we threw caution to the wind. He chose a Skyline Midnight Purple wrap, alloys, a body kit, everything he’d ever wanted.
“He passed away in that very van and, from that moment, it became sacred. I couldn’t bear to let it go. That van carries part of Dec’s spirit. It’s a rolling legacy of my boy.”
Today, I still take it to car shows to honour him, and to remind people that disability doesn’t mean limitation. People with disabilities belong wherever they want to be.
Using my grief to give others a voice
After Dec passed away, I was struck by how few spaces there were for parents like me who’ve lost a child. There were countless support groups for people who’d lost parents or partners, but not for those who are still parents even when their child is gone.
I remember trying to join a Mother’s Day group, only to be told it was for people who’d lost their mums, not those who’d lost a child. That made me feel so alone and I knew I had to do something about it.
I’d wanted to be a children’s presenter before Dec came along, but he became my priority instead. So, I decided to use that voice, that energy, to create something meaningful.
That’s how The Functioning Griefster podcast was born and it’s recorded in Dec’s van. The same van that carries his memory now carries the voices of all types of people sharing their stories of love, loss and legacy.
I even trained as a holistic grief and trauma coach so I could properly hold space for guests. I can’t stop Duchenne. I can’t stop loss. But I can make sure nobody who’s grieving feels unseen.
“The biggest gift we can give to someone who’s grieving is permission to say their loved one’s name, to talk about who they were and to keep their story alive.”
I feel honoured to give that to people.
Love that still drives on
People sometimes ask if I ever thought, “Why me?”. But I never did because it wasn’t happening to me, it was happening to Dec. And I knew I was chosen to be his mum for a reason.
Caring for Dec was the greatest privilege of my life. I was blessed with 24 years of the purest love imaginable. We had such a deep bond that some people never get to experience in a lifetime, and for that, I feel very lucky.
I share our story, to show that grief is not just pain. It’s love that has nowhere to go. And for me, that love still drives on – right there in Dec’s van.
You can listen to The Functioning Griefster here.
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