Chapter 1

Ruminating on Love

Lingering over my morning cup of ambition, I suddenly realise time has escaped me, and overindulging in the Mummy alone flow has compromised a prompt arrival for the yoga class I am teaching. Normally, this precious caffeinating is interrupted by the heavy footsteps of my 180-centimetre, fourteen-year-old son descending the stairs, hilariously sporting a Flock of Seagulls coiffure. Gripping my precious coffee to withstand his forceful embrace and the planting of beautifully plumped lips, a deeply rasped “Mor-nin’ Mu-mmy” is sweetly relayed. Hearing those two simple words evokes so much joy and gratitude for giving up a career in fashion, devoting my life to his betterment. Perhaps not spoken perfectly, the certainty of execution reaffirms the years of love and dedication that nurtured his transformation into a happy, confident teenager, living in partnership with an ultra-rare disease.

With school holidays justifying a well-deserved lie-in, I decide to bring Bond the medicine attempting to control his epilepsy – an unwanted gift from his ultra-rare disease at the onset of puberty. Gently turning the door handle so as not to startle my giant bubby, I navigate the familiar darkened room while softly singing the morning wake-up song composed by his father. “Good morning, good morning, good morning, Mr Bond. Hello! How are ya’? What’s happening, Mr Bond?” Before parting the curtains, allowing the sunshine to rudely interrupt his slumber, I question the unfamiliar stillness. Where are the sleepy protests to my imprudent awakening? Where is the sound of jostling covers as he snuggles deeper into the warmth? Why is the deafening silence prompting a fear that begs me not to move? A wilful throw of the curtains instigates a slowing of time. My breath is taken, replaced with stumbling gasps of air. Panic courses through my body like lightning. Seemingly fast asleep on his tummy with those long fingers softly curled under his chin and beautiful lips softly parted, my body already knows what my mind refuses to believe. Our beloved boy slipped away during the night.

All sensible thoughts are escaping me, except for one. During a recent trip to Boston Children’s Hospital, consulting with the leading authority on Bond’s disease, Dr Pearl prophetically relayed that sudden unexpected death in epilepsy patients (SUDEP) is more prevalent amongst our 350-member ultra-rare disease community. This disquieting information, once relegated to the darkest depths of my mind, now brings comfort by silencing my petulant brain and reaffirming that there is nothing I could have done to save my baby. Succinic Semialdehyde Dehydrogenase Deficiency (SSADHD) is the ultra-rare disease that selfishly took Bond for itself. I have no rhetorical expressions for why, only silent reflections.

My mind flashes to our final moments, just a few hours before, yet already feeling like a lifetime ago. Whilst tucking Bond into bed, a kiss good night was followed by his last words: “Luv ‘ew Mummy, Luv ‘ew Gaggy” (Love you Mummy, love you Gaggy). Once again, I gasp for air as my thoughts jump to his beloved father, blissfully unaware at work. Deciding not to break his bestie’s heart for a few minutes longer, calmness sweeps over me. As the chaos of the emergency swirls, I sit holding my baby’s hand, ruminating on his last professions – love.

But why begin a story that is founded in love with the most devastating bit? Because, unlike my own, the cruelness of death does not define my son’s life. Clearing the air of dreadful anticipation frees the heart space to fall in love with a boy whose life was defined by a happy fortitude, unburdened by his disease. Despite all the developmental stumbling blocks, Bond continually chose to prioritise his heart’s quest to impart happiness. Wooing you into submission, Mr Bond would search the depths of your soul with his ocean eyes before an impassioned inquiry of “Ha-ppy?” ensured his success – or got him out of trouble.

Finding solace in carrying the torch of love that Bond left behind, I share our story to highlight the thread of humanity yoking us to the three hundred million people living with a rare or ultra-rare disease. With so many affected globally, surely you must know someone touched by one of these diseases. Considering that 60% are initially misdiagnosed – as with Mr Bond’s “lazy Autism” diagnosis – perhaps you do.

I would be remiss to claim our experience is unique; statistically, we were the community’s poster child. Like Bond’s SSADHD, 80% have a genetic origin, and 95% currently have no treatment. Most despairingly, 30% of children with a rare disease will die before their fifth birthday – thankfully, one statistic our little trooper did not adhere to. In sharing our journey, I hope to put a face to these statistics and raise awareness for a community whose numbers equal the population of the United States.

The old adage that it takes a village to raise a child equally applies to surviving the unbearable weight of grief. This is a story about the most gorgeously inspiring boy, but also his delightfully crazy mum, the quietly introverted father who grounded us, and the worldly tribe who embraced our special-needs son. Previously, keeping our path of inclusivity lit, that tribe now helps to carry our burden of grief. It is unrealistic to believe anyone is impervious to such perilous obstacles; at some point, we will be overwhelmed by grief. Whether it be the loss of a loved one, the dissolution of a partnership, or failed ideas on life’s trajectory, we will all, one day, grieve.

Our family’s story is set within the fanciful city of Dubai and traverses many corners of the globe, but I am confident you will find glimmers of connection within everyday normality – feelings of self-doubt, crazy school mums, and the friendships that help you survive it all. By sharing our embrace of uncertainty and forging our own path that prioritised our son’s needs over traditional conformity, I hope to spark inspiration and empowerment in defining your own boundaries with unwavering grit, and if necessary, a couple of metaphorical fingers. But mostly, I hope you find inspired equanimity, which can be drawn upon during life’s chaotic moments, enabling you to hold space for loving ruminations.