Settling down in the baby group, the mum sitting next to me smiled. ‘He’s gorgeous,’ she commented, nodding to my little boy, Mylo. ‘How old is he?’
‘He’s two,’ I replied – and waited for the inevitable.
‘He’s small, isn’t he?’, the mum commented, taking a second look. She was right, my little boy was still in size 12-18 months clothes, despite having celebrated his second birthday months ago.
This was the bit where I always paused. Did I explain – once again – that my little boy has dwarfism and will always be shorter and smaller than his peers? Or did I let the moment pass, without saying anything?
After meeting my husband Alex on a night out at university in October 2012, back when I was 20, we got married in October 2015 and by the next year, I was pregnant with our first son, Tobias.
Then in 2019, I fell pregnant with Mylo. My pregnancy was textbook until our 20-week scan, when the sonographer pointed out my bump was measuring big.
‘It’s probably excess water,’ they said, but decided to book me in for extra scans. I was happy that they were keeping a close eye on me and my baby.
Everything was going fine until 36 weeks, when the sonographer paused. ‘It looks like your baby has achondroplasia, the most common form of dwarfism,’ she said.
Everything went blurry as she brought in a foetal medical doctor who confirmed that my baby’s upper arms and thighs were significantly shorter than average, but they wouldn’t be able to confirm for sure until he was born.
Going home and breaking the news to Alex, I felt like my world had been turned upside down.
I hadn’t been given a definite diagnosis yet, but I wanted to be prepared. Because, if he did have achondroplasia, I had no idea what life was going to look like, for either of us.
I didn’t even know then whether it would affect him mentally as well as physically.
So I set about educating myself as best I could. I joined Achondroplasia UK, a support group on Facebook, and explained my situation. Everyone was so welcoming and supportive, my worries eased, just a fraction.
And they eased again when other parents assured me that, if he was diagnosed with achondroplasia, his mental development wouldn’t be impacted.
‘But the physical effects will make life hard enough,’ I thought desperately.
Like most parents-to-be, I’d never assumed I was carrying a child with a disability and I couldn’t help but grieve for the healthy baby I thought I was carrying.
I know we’ll face inquisitive stares and unkind comments
I remember watching The Undateables one night, and bursting into tears. ‘Will he ever find love or get married?’, I wondered. ‘Will he feel like he’s a full member of society or will he always feel like he’s on the outside, looking in?’
In April 2020, I gave birth to Mylo, my gorgeous baby boy. Despite my fears and worries, I immediately fell in love with him.
Going home, although the diagnosis still hadn’t been confirmed, I decided to take the advice from the other parents in the support group, just in case. I didn’t put him in a baby carrier and avoided lying him in a rocking chair, as neither would give his back the support it needed.
Continuing my research, I watched Little Women USA and saw how other people infantalised the women who starred, simply because of their height.
‘You’re so cute!’ strangers would coo over the thirty-something mums who had both a job and a house.
Suddenly I realised just how inaccessible the world was to so many people. Light switches, door handles, shelves – all of these would be useless to our little boy.
‘I had no idea people were going through this,’ I said to Alex, shaking my head.
And of course, it wasn’t just dwarfism. It suddenly struck me how many other – sometimes invisible – illnesses, conditions and disabilities people may well be living with, without anyone on the outside having a clue.
It really was true, I realised. You had no idea what other people were going through.
At seven months old, Mylo was officially diagnosed with achondroplasia. It meant that while his head and torso were of average height, his legs and arms would grow to be a third shorter, which could result in a host of health problems, including a curved spine and respiratory problems.
Even during his early years, it began to impact him. He didn’t walk until he was 19 months old and he struggles to pull up his trousers, as his arms are shorter.
Now that the difference in his size is starting to show, when other parents comment on it, I’m never sure whether to reveal his whole medical history and explain why he is smaller than their toddlers, or just to brush it off.
After all, Mylo is so much more than his disability and already, I’m protective of his identity becoming wrapped up in that.
I want people to notice how much he loves diggers, his cheeky smile, the fact that he is a total snack fiend who loves cuddles and attention. Not just the fact he has dwarfism.
Already, he is becoming a pro at discovering his own way of doing things. Walking slowly, rather than running and learning to swing his coat round to put on.
And the more I watch him, with his wild brown hair and determined walk, the surer I become that he is exactly who he was always meant to be.
I already know that life isn’t going to be easy for either Mylo or for us, as his parents. We’re already facing battles to ensure that his health issues will be taken seriously and addressed correctly.
I know we’ll face inquisitive stares and unkind comments when his height difference becomes more apparent.
Every day, I worry if I am doing enough and preparing him correctly for his life ahead. Whether, in the future, I will manage the balance of making him aware of his differences to his classmates without making him conscious of them.
I’ve started my own business, @no47interiordesign, in order to give myself the time and space to exist outside of being a mum, and being a mum of a disabled child. It can be overwhelming, focusing so much on someone else, so it’s been good for my own mental health to have my own ‘thing’ to focus on.
I focus on inclusive interior design, because I’ve realised just how important it is for everyone to be able to use and enjoy their home regardless of their mobility or disability.
Mylo has opened my eyes to a whole other world that people experience and I know I’m a better, kinder, more patient person for that. And so to him – and his disability – I will always be grateful.
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