My little boy is extremely lucky.
He is surrounded by love.
He goes to sleep to the sound of the waves and breathes in fresh sea air every day.
His school days are full of fun, challenge and fulfilment.
He has a simple life, but a good life.
When I think of my boy, it is this picture that I see in my mind. It is real. Not rose-tinted nor sugar-coated.
Somehow, the spectres that ran through my thoughts when he was tiny have faded beyond sight, or thought.
I am not overcome with despondency as I thought I would be, when I think of the fact he cannot walk or talk. I don’t spend a single second of thought entertaining notions that this life is unfair.
Because I take my lead from him. And he lives life big and large. And happy.
The tearing urgency to find a reason for his disabilities has passed. Instead, we share a little knowing laugh between us when the latest round of routine tests comes back marked ‘normal’.
And I have stopped racing to the postbox to see if any of the envelopes look like they might have come from a geneticist’s office, or from one of the academic studies supposedly sequencing his exome.
Five years ago, if I had tried to imagine a life with this extremity of disability in it, but no answer to the question ‘why?’, it would have felt unfathomable.
I had to protect myself with emotional paralysis and a dogged determination to find a reason. Or the weight of the days and years to come was simply too much.
How could we go on, with the toil and frustration, the physical hard work of caring, the hours spent feeding and changing on too little sleep? How could we continue to advocate for him in the face of societal systems that crush rather than care?
How could we do this without knowing the reason ‘why’?
How could we look him in the eye every day without pressing for answers that might tell us if he could be cured of his epilepsy or more able to communicate, be more independent?
Enveloped in an unceasing need to leave no stone unturned.
But every stone we have turned over is blank. Not a thread of a clue. No pattern, no path to explore. I no longer believe that anything will be found. And I find myself unsurprised to be at ease with that.
Simply the passing of time has sufficed.
Because now we can see that our boy is lucky. That for him, disability and living a great life are not mutually exclusive. He has his health, right now, and steps into each day with gusto.
So we have stopped asking ‘why’. There are others who need an answer to that question far more urgently than we.
Instead we take our lead from him.
His life is a happy one. By measure of laughter alone, he takes a lion’s share of joy in daily life. He has a sophisticated appreciation of the ridiculous. He sees life’s funny side. And is cushioned from life’s darker shadows.
His days are gentle, and funny, and fully of affection.
And I’m pretty sure he doesn’t waste a single second asking ‘why him?’
DISCLAIMER: the opinion expressed in this blog post represents our views only and I appreciate that for many families, the need to find an answer to their child’s disabilities or health condition remains critical.
I continue to advocate for their needs and wants within an NHS system that still has much work to do in developing a holistic view of undiagnosed children. Too often our children are seen ‘symptom first’ with little to no joining of the dots and therefore little hope of diagnosis.
This post was written for Undiagnosed Children’s Day 2019, in recognition of SWAN UK, the charity that connects families who have children with Syndromes Without A Name.
The first Undiagnosed Children’s Day took place in 2013. If you want to take a look at some old posts, most years I have managed to write something…