“I created a monster…”
Rubi Khan giggles as her son Sulaiman rolls his eyes. His body may be wasted by Muscular Dystrophy and twisted by severe Scoliosis, but his sense of humour was definitely warped by her.
When Sulaiman was born, Rubi was told he wouldn’t survive more than five years. She fell into a deep depression and spent two years in a zombie-like state.
Even his grandmother refused to hold him. She thought he’d die in her arms.
Like the children she’d buried.
Rubi was the only surviving child of ten and looked after her mother who, quite understandably, got lost in a world she couldn’t get out of, resulting in a complete nervous breakdown.
Sulaiman’s father, fearing his beloved wife was facing a similar fate gave her the confidence to carry on:
“We only have five years. Allah (God) has a reason for everything. Don’t waste time, don’t look back. We don’t give up till we stop breathing.”
Rubi found her strength through her faith and her ever-supportive husband who she describes as the love of her life and her best friend.
But Sulaiman is her soul mate. He’ll be 34 in July.
For 22 years and three months, she was his sole carer. She nursed him through ongoing struggles with recurring chest infections and five bouts of pneumonia which should have killed him. They joke about the ‘countless times’ he actually died.
But he wasn’t the sole child under her care, Sulaiman has an older sister, a younger sister and a younger brother who Rubi guided to adulthood with the same love, protection, openness and lack of judgement. It’s been hard work.
“Sulaiman is the source of my strength, whenever I feel down, I give him a hug and something amazing comes out of me, I forget where I am, and I feel so light.”
(He cannot physically hug people when he wants. He needs others’ help to hug them. Which is hugely frustrating – he’s a big hugger!)
The arrival of round the clock carers for Sulaiman twelve years ago allowed Rubi to cut the apron strings. Not for the sake of her freedom, but for the sake of their relationship. She knew nothing other than being a mum and carer and she knew she had to give him the breathing space to turn into a man – which he took running.
He attended university and broke into the highly-competitive world of advertising. These days he’s an entrepreneur with dreams of making a fortune. But most importantly he’s working tirelessly to destabilise the accepted narrative of creativity and disability to create a positive impact for the 1.3 billion (and counting) disabled people across the world in the creative industries and beyond. Rubi couldn’t be prouder of him and what he is achieving by himself.
What they achieve together is a pure expression of life’s joy. He even took her to Disneyland to make the most of skipping the queues!