Please, give us a smile
I’m Mum to 6 year old Ivor, who lives with Angelman syndrome. This is a rare neurogenetic disorder affecting about 1 in 15,000 – about 500,000 worldwide.
People living with Angelman syndrome are significantly intellectually disabled, have balance and coordination issues, motor impairments and many have debilitating seizures.
Some will never walk. Most will never talk.
Life changing.
I’d like you to step into my life as a parent carer, just for one day.
Saturday 2 May.
I took Ivor to the Techniquest science museum in Cardiff today.
I lifted him out of the car and steadied him. But he shook free of my hand and darted away from me, completely unaware of the traffic. I dropped my bags and ran after him, carrying him as far as I could manage.
Exhausted already. Already starting to wonder if this was a good idea. It’s easier just to stay at home.
As soon as we were inside the museum, Ivor ran towards the water display. He seemed pretty calm next to me, but suddenly grabbed a young girl’s hair as she bent down in front of him. He then tried to pinch her face to get her attention, because he can’t talk. I jumped in and said “no” and pulled him away, but he kept flapping his arms and fighting me. He doesn’t understand.
The girl’s Mum was sympathetic, but I saw the fleeting look of worry in her eyes, and heard her quietly tell her daughter to stay away from the disabled boy.
Back off. Reset. Hide.
At the museum shop, I let go of Ivor’s hand for seconds while paying. When I looked up, he had already moved ahead into the café area. He tried to take food from a stranger’s plate because he was hungry. When the woman shouted, Ivor became confused, pulled her hair and held on. I ran over to take Ivor away, apologising profusely – as she and her husband then turned and shouted angrily at me.
So hot. I cry.
We sat down for lunch, but Ivor became agitated and threw my cup of coffee onto the floor, splashing the legs of another customer. As I dropped to my knees to clean up the spill, Ivor scattered my purse and his water bottle across the seating area.
Exasperated. Deflated. We need to go home.
This is a fairly normal day out for us.
It is very difficult for me to write this as Ivor’s Mum, but I wanted to cast a light on what life can be like caring for a disabled child, a child living with Angelman syndrome. Day in, day out.
I allow myself these moments to dwell, to feel sad and sorry, the darker days.
But life moves forwards and I have to keep strong. And the darker days get less; I can cope with them better.
Being a parent carer can be really hard, and I do the very best I can with a heart full of love.
But I’m going to tell you something that might come as a little surprise. Despite all the complicated challenges – he exhaustion, grief, confusion and worries that wrap through my life as a parent carer – I find it’s the easiest things that usually help the most.
A simple smile is often just what I need.
Here are some golden moments that stay with me and quite literally prop me up when I need it:
A stranger comes over to me, as I sit crying with Ivor on my lap in a cafe, and simply puts her arms around me.
Our bus driver smiles and asks us how we are, every single morning.
The warm, understanding embrace of my Angelman Mum friend.
A kind doctor kneels gently beside Ivor to look at his foot, when no-one else will.
The lifeguards at our pool patiently bring Ivor a watering-can and a cup every time, just because they know.
The lady in the supermarket crouches down, smiling, and gives Ivor a hug.
A little boy wraps his arms around Ivor at a party, to protect him from the balloons. His Mum puts her hand on mine and asks if I’m ok.
The girl at the reception desk in Techniquest gives me a reassuring smile when I’m on my knees.
Thank you, from the bottom of my heart. These simple acts of human kindness help more than you can imagine.
A moment of warmth and kindness. Empathy, reassurance and understanding. Without the need for words.
So please, give us a smile. It means so much!
It’s National Carers Awareness Week on 8-14 June 2026 – an annual campaign to raise awareness of caring, highlight the challenges that unpaid carers face and recognise the contribution carers make to families and communities throughout the UK.
I hope that reading this has made you pause. Given you a chance to think about any carers you know. Encouraged you to share your smile, just that little bit more.
If you’d like to chat about anything I’ve written about, about being a parent carer or having a disabled child, or want to know more about Angelman syndrome please get in touch. I’d like that very much.
