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. Bracing my precious coffee to withstand his forceful 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 have 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 disease at the onset of puberty. Gently turning the door handle to not startle my giant bubby, I navigate the familiar darkened room while softly singing the morning wake-up jingle his father composed. “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 gently curled under his chin and beautiful lips 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 the disease, Dr Pearl prophetically relayed that sudden unexpected death in epilepsy (SUDEP) is prevalent amongst our 350-member Succinic Semialdehyde Dehydrogenase Deficiency (SSADHD) community. This disquieting information, once relegated to the darkest depths of my mind, now brings comfort by silencing my petulant brain and reaffirming there is nothing I could have done to save my baby. 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 emergency swirls, I sit holding my baby’s hand, ruminating on his last profession – that of love.

But why begin a story that is founded in love with the most devastating bit? Because, unlike my own, the cruelty 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 of imparting 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, this was 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 global community whose numbers equal the population of the United States.

The 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 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 a path that prioritised our son’s needs over traditional conformity, I hope to spark inspiration and empowerment in defining your 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.

Ruminating on Love is the opening chapter of Happy Mr Bond, which you have just read. Has your heart been lovingly strummed? Do you now understand, with empathetic clarity, why this story must be told and for whom? In sharing the story of our happy Mr Bond, I put a face to the disparaging statistics of the “rare is many” community. It also serves to normalise the existence of differently abled individuals by embracing their inclusivity as meaningful members of society whose contributions are far more enduring and impactful.

In an age of contrived perfection and whimsical platitudes, Happy Mr Bond normalises the imperfect realities of surviving life and death. Whether you are currently immersed, contemplating, or even choosing not to partake in the beautiful insanity of parenthood, we can all learn about ourselves through others’ stories. By sharing my trepidation, anxiety, and feelings of inadequacy, I normalise the realities of becoming the best version of yourself and highlight that it will never be accomplished in isolation.

Self-empowerment, firm boundaries, and the necessity of a loving tribe are a few meaningful insights from Happy Mr Bond. But if there could only be one takeaway, I reaffirm my final sentiments of chapter one - inspired equanimity. It truly is within life’s more chaotic moments where this precious attribute grounds you, allowing space for loving ruminations.