When is progress, progress, and what is it anyway?

When is progress, progress, and what is it anyway?

For the last 17 days I’ve been an honorary member of the V-Gang. Persuaded by the ever growing throng of vegans in my family I thought I might give it a go too, in a ‘god I am actually 40 now and should really get my act together’ attempt at improving my health, and because, well, climate change.

In that time I’ve consumed a massive amount of greenery, learnt how to cook aubergine and discovered that far from craving cheese, it now (to me) stinks like a farmyard slurry pit. I have more energy, my wobbly ankles don’t ache and creak in the mornings anymore, and my hair, skin, nails and gut flora seem to be loving the micro-nutrient injection.

I was warned there might also be some weird side effects, which I totally (silently) poo-pooed. I was told that about three weeks in, I might start to feel like my brain has been re-wired, with vivid dreams and memories sparking from distantly buried neurological quarters, freshly exhumed from a (now disintegrating) meat fog.

I thought this was totally stupid of course. Until it began happening to me too. I can only describe it as akin to reshuffling a dusty old deck of playing cards. Every card has been there the whole time but just hidden out of sight within the pack. Now, each card is being exposed to the air, its face on display, ready to be picked and matched in ranks or suits, to be made sense of in a logical way.

What has appeared for years to be a bit of a joker in the pack, an irritating mosquito of a memory that I just couldn’t swat away, or make any useful sense of, was a random visit to a palm reader I made in my late teens, at one of those rip off psychic fairs that most sensible people know to avoid.

For decades, the voice of the palm reader has rung in my ears at just about every opportunity I give myself to decide I am a total failure at life and need to do better (which is just about every day).

His words to me were: “you need to pick a path, and stick on it, otherwise you will spend your whole life bouncing around from one thing to another, and never make progress at anything”.

He may be right, he may be wrong, but I’ve never been a huge fan of the straight and narrow. Which is probably a damn good thing because life in our house is anything but linear.

The bit that I had forgotten, but that has come back to me in a fit of vegetable based clarity is that the palm reader also told me I would have two children, but that it would be ‘complicated’. He didn’t know how, or why, but there would be some uncertainty ahead.

On that front, he hit the bullseye. There is nothing straightforward or commonplace about either of my children, or the way in which they progress through the world. Back then, sitting in front of the palm reader, the old me would have decided that was a pretty terrifying prospect, but now?

Now, I am in awe of both of them. I couldn’t be prouder of their differences.

I know that most people come here to read about Lawrence. To find out what progress he has made (plenty, in his own unique ways), or whether he has a diagnosis yet (no, all medical tests still say ‘normal’).

I know you don’t come here to chew the plant-based fat with me over the merits of avocado or hummus, or to join me in rediscovering random bits of my card based memory filing system. So, here’s a little update on the boy, and the ever growing list of valuable things he’s teaching me about life.

In essence, Lawrence can now do things that for some time I stopped hoping might ever happen, like being able to communicate what he wants. But also he still can’t do things that for a long time I thought would make life unimaginably awful if he didn’t, like, say, walking or talking.

Luckily, I was wrong. Almost nine years in to raising Lawrence, life is very far from unimaginably awful. In many ways, it’s totally ordinary, and in others it’s wildly different from the every-day.

The measures of progress and happiness that I thought would be there as some kind of roadmap through parenting just aren’t present in our lives. But there are others that have shown their faces instead. The rites of passage are different but no less in value. Perhaps it’s just like occupying some kind of third dimension, or a weird dream where everything is familiar and unfamiliar in equal measure.

I won’t ever describe Lawrence by rolling out a great long list of conditions, disabilities and forboding acronyms. In parent carer circles, this seems to be a way that a lot of parents talk about their children, and I understand why, but it’s not for me.

I have also learnt that describing or measuring him by conventional milestones is not something I want to do. Because I know how it feels to be on the receiving end of that, when you can’t join in with a conversation because your child’s life experience and abilities are just so different.

Also, when I step outside of my black-and-white thinking brain for a few moments, I see that progress isn’t linear. It’s up, down, sideways and back to front. And that our arrows don’t all point in the same direction. Sometimes they change direction, too. Often, many times over.

While there have been leaps and bounds in his development in the last year, I know that this could readily change, so to commit too much value on them is, in my mind, misplaced.

I don’t believe it’s right that anyone’s contribution to the world or personal value should be measured just by a tick-list of societal-approved achievements, what they can ‘do’ or how much they have.

So, of the boy, I will say this instead.

1) He’s hilarious and gets funnier and funnier every day. He has developed the most raucous laugh that tells anyone in the room he’s a total nonsense maker, on the look out for devilry and mischief. Joining in a joke with his favourite people is Lawrence totally on top of his game. Monkey business is his middle name.

2) He’s nearly 9 and has sprouted an attitude to match. My daughter likes to tell me that it’s always the Year Fours at school who are a total pain in the neck and true to form, Lawrence seems to be following that pattern. At home, at least. He knows just how to rock this ship when he so chooses.

3) He knows how to communicate in ways that most of us forget we can do, because we have become so hyper focused on conventional language. With a look, a touch, a reach or a facial expression, Lawrence can pretty much run the show. He also simply can’t say one thing but mean another. There’s no pretence, socially complex small talk, reading between the lines or pass agg weirdness with this boy. This makes him a better communicator than most, in my mind.

We’re working on specifics, as sometimes it can take a while to figure out which particular season or episode of a show he’s asking for, or whether he hates his dinner or is just trying to sidestep to get to pudding (he’s very particular and he’s not shy of telling us when we get it wrong).

I’ve learnt that just because a person can’t talk, or write, or press buttons on a computer to say something, it doesn’t mean they can’t get their point across. And actually all we need to do is listen differently.

4) He has learned how to express love with unmistakeable clarity. With the whispery touch of his kind hands, a smile that surfaces from deep behind the eyes and lingers when it connects with your own, a contented sigh and a full body lean-in to a cuddle. Only the other day, he inch wormed into the kitchen on his belly, just to give his dad a kiss, before inch worming back to his programme on the tv.

5) He’s showing us again and again that he’s probably way more attuned than most of us to the things in life that matter. And for me, this is the big one. He’s pretty delighted with who he is and just couldn’t give a crap about what others or society expect. He wants his people around him, to enjoy each day for what it brings, to entertain and be entertained, and to be at one with the world around him. A regular re-set, taken by sitting at the water’s edge, watching the waves and listening to their rhythms, sets him up whatever comes next in his day.

6) His health is good. For really, all the value judgements and assumptions that can be made about disability and quality of life, ultimately it’s his health that can have the heaviest influence over his enjoyment and fulfilment in life. And right now, he’s on top form.

And so what of progress? Well, many of the conventional indicators of progress just don’t apply. And that’s ok. Except for one.

There’s one place where we’re stuck. On an endless loop. And by god do we need him to move on.

This time around, Lawrence embraced Christmas with gusto. He got it. So much so that he came home with a Star of the Week award from school for having a ‘very positive attitude towards his Christmas Show’.

Well the positive attitude didn’t go away when the decorations came down. Of course there are no more Christmas performances happening at school, so he’s transferred his enthusiasm to one, single, five minute long Christmas themed episode of Peppa Pig.

Mr Potato’s Christmas Show. Featuring everyone’s favourite Christmas vegetable, Little Sprout.

Where, apparently, the magic of vegetables never ends.

We really wish it would though.

Or maybe there’s a lesson in there too… hey V-Gang?

If you’re a moderate, community-minded Tory, please think twice at the ballot box on Thursday

If you’re a moderate, community-minded Tory, please think twice at the ballot box on Thursday

I see you, quiet, generous ones. Hello there, people who like to do the right thing.

I see you, diligently working at your job, volunteering at weekends, stopping to chat to the lonely old chap at your local shop.

Because that’s what decent people do, right?

You have worked hard all your life. Raised a family. Played your part in the school PTA. Paid your financial dues to society.

Because that’s what decent people do.

You will put an x next to your Conservative candidate’s name on Thursday.

Because that’s what decent people do.

Maybe you have a few niggling doubts, though you don’t know where else to place your faith but in the blue box.

Maybe, like so many others, you are exasperated by the political landscape we find ourselves in, but your fear of a Labour government is ingrained like lead running through a pencil.

Maybe, you fear that if you don’t vote Conservative, we face economic collapse and a mushroom cloud of nationalisation.

Maybe, you are an actual real live person who isn’t Boris Johnson and who just wants to get Brexit done (although I’m yet to actually meet one, so ‘hello’ if you’re reading).

Maybe you earn over £80,000 and simply don’t want to pay more tax (and to you I say go right now and find one of the online calculators that will show you how little extra you will really pay).

Corbyn is your Cryptonite. I get it.

And here, I will let you into a little secret. I don’t love Corbyn either. And I am not naive enough to think that the only party to have dark forces within its depths is the Conservative party.

But as a parent of a disabled child who is stuck in the quagmire of a safe Tory seat I have to tell you it’s like inhabiting one of those existential nightmares where you scream and scream but no sound will come out. Like wading through quicksand, sinking a little further with each step. Or both. Like rubbing your belly and patting your head at the same time while reciting the alphabet backwards, but less fun.

I am at a total loss as to how, in a part of the country so inhabited by the generous of heart and the thin of pocket, an immense blue tide is expected to wash over us once again. Many of us here who long to see our little forgotten corner of Cornwall coloured in red, yellow or green are expecting to find ourselves in familiar discomforting territory, scraping our faces against the sea bed, engulfed beneath the wave.

So here I am instead, behind my laptop screen, doing my best Celine Dion inspired lyrical soprano and asking you to think twice before you vote Conservative on Thursday.

A thin, reedy but not yet despondent warble.

Are you thinking ’bout youuuu, or us?

Because this Conservative party has shown its true colours. And they are not the colours of morality, tradition, stability, responsibility or prudence that so many have chosen to vote Conservative for in the past.

We know this Conservative campaign has been littered with lies and deceit. That 88% of Tory campaign ads on Facebook contain misleading information (compared to Labour’s 0%).

We also know what Boris Johnson, and many of his colleagues think of sick, vulnerable and disabled people.

Only last week, we saw Sally Ann Hart, the Conservative candidate for Hastings and Rye (Amber Rudd’s old seat), say at a hustings event that disabled people and those with learning disabilities should be paid less because some “don’t understand money”. This is the same candidate who is under investigation for Islamophobia and for liking a Nazi phrase on social media.

In the summer, Nadine Dorres, was appointed by Boris Johnson as mental health minister, after having sparked outrage in the disability community when she publicly used the term ‘window lickers’.

The examples of hate speech and ableism are endless, and easy to find.

Most concerning, though, and eye opening to the future we may succumb to under this Tory party are the many questions coming to the surface about Matt Hancock, Secretary of State for Health and Social Care.

Just this week, as he was dispatched like a carrier pigeon on speed to put out a political fire oop North that began with an over-worked A&E department in Leeds and a small boy with flu, he managed to simultaneously stoke the fire and lay a smouldering pile of his own.

The Matt Hancock shaped mess started with a bare-faced falsehood about ‘hoards of Labour activists’ descending on Leeds General Infirmary, one of whom ‘threw a punch’ at a political aide. These falsehoods flew so far as to reach both BBC and ITV’s political editors before they had to retract and apologise. (It transpired from some on-the-ground video footage outside the hospital that in fact there were just a couple of people on bikes, and no fisticuffs.)

The mess then really started to give off a pungent stench when social media erupted with multiple posts claiming that the whole incident with the youngster in A&E had been staged, which were then quickly revealed to be trolls and bots spreading untruths that were shown up by the hospital’s own statement and apology for the boy’s standard of care. One such troll happens to be a personal friend of Matt Hancock.

And so is her son. Who, if you dig deeper, also happens to be a member of some highly questionable far-right, white supremacist groups. All there to see on social media, on his personal account. This is real life, not hearsay.

And so I ask, do we want government ministers who fraternise with far-right, white supremacists? Should we be concerned about that? Or let it brush over us, write it off, after all, this stuff always exists on the fringes of politics, right?

I mean, I’d quite like to sit back and just ignore all this political guff, and get on with raising my family in peace. And yet I cannot ignore the rumbling, unsettled feeling about the direction in which we are moving.

Because it isn’t on the fringes anymore, it’s right there in plain sight. And I am worried.

I am worried about a health minister who has far-right, white supremacist connections. Particularly one who also happens to be proposing full genetic sequencing for all babies at birth.

Because we know what that particular cauldron of far-right white supremacy and genetic medicine stirs up.

It begins with the far-right infiltration of government.

It is facilitated by advancements of medicine and apparent breakthroughs for people with disabilities. Offers of help and hope for diagnosis and treatment for families with disabled children.

Last time this particular sequence of events occurred in Western society, it ended in genocide.

And here in the UK, right now? The Deciphering Developmental Disorders and 100,000 Genomes projects are falling over themselves to gather genetic data from families just like mine who have a disabled child. Giving us hope for answers and access to help. We have been on one particular study for seven years, our entire family’s genetic information somewhere in a lab in Cambridge, with no answer in sight.

Forgive me if I’m more than a little sceptical of the parallel timing of the rise in genetic medicine alongside the swing to the right in our politics.

Forgive me if I’m more than a little bit frightened, of what a far-right, white supremacist sympathising government or society may end up doing with this information.

In America, we are already seeing the development of DNA based dating apps that are designed to eliminate genetic conditions. Surely that’s a good thing though, right?

Well, no. Actually. And for those in any doubt, a quick read of this academic paper “What is immoral about eugenics?” should clear up any questions.

The existence of difference in our human population is now very much at stake.

If you can get behind the paywall, actor Sally Philips has written an excellent piece in The Times about how raising her son (who has Down Syndrome) has shown her the importance of making every type of human feel valued.

If we cannot measure and appreciate our human value in spirit, soul and love and instead we create a world where humans are valued for their physical and mental aptitude or economic output alone, I fear very much for where we will be.

And so I hold on to hope that the decent people will think twice about the future we are creating when they choose which box to put an x in on Thursday.

The prospect of a modern day pre or post natal Aktion T4 programme happening right here in our country now doesn’t seem ridiculously far-fetched if we continue being blindly tugged further and further to the right.

To those not in our shoes this may seem like catastrophising, it may seem like adding 2+2 and getting 5. But we are living in unusual times where we have seen governments quite willing to break the law to push through an agenda. Where personal greed and the manipulations of wealth appear to come first in public life, before the primary duty to serve the needs of the people.

This is so much more than just a Brexit election. Behind the Brexit smokescreen, there is an ideological choice to make. We are truly at a fork in the road. But one that is easily missed amidst the fog.

And that’s why I’m asking you to think twice.

The emotional rewiring of being a Grown Up

The emotional rewiring of being a Grown Up

The Grown Ups. The rule makers. The tea drinkers. The ones who keep the cogs of daily life churning and will always be there ‘in a minute’. 

As a child, the Grown Ups were also the ones who would say deeply irritating things.

Like endlessly and predictably commenting on how many inches I had grown (when I hadn’t) and prevaricating about how tall I would be (which I’m not). This happened to me so often that I had to cultivate a special face for dealing with it politely.  

That same face was deployed as armour against any adult wafting around a nostalgic mist about how simple life was being a child and ‘if only we knew’. It also came out when presented with Something Disgusting at someone else’s house; Cadbury’s Smash, orange squash, tinned spaghetti hoops or anything in a box labelled Mr Kipling.

It doesn’t seem to be impolite for children today to say they don’t like something but in 1980s suburbia that was unthinkable. If you wanted to be invited round for tea again, you’d coerce down the gullet whatever offending slops were put in front of you.

I couldn’t wait to be a Grown Up so that I’d never have to eat Cadbury’s Smash again, no-one would ever again comment on my height, and life would be simple. I didn’t care for nor heed the humming narrative around me about how I should relish the joy and wonder of my Golden Days of Childhood – (which people don’t really talk about anymore either, I wonder why?)

As a child, most things in life were black and white. I liked my dinner, or I didn’t. My room was tidy, or messy. Becky was my best friend, or she wasn’t. I was good, or naughty. Happy, or sad. Excited, or frightened.

There were distinct and opposite ways of being, which could oscillate wildly in mere minutes, but which had very little grey space in between.

If I have learnt anything about life since that time, about what it means to be a Grown Up in the 22 years since I officially became an adult, it’s that the familiar and comfortable black and white of childhood existence starts to disappear.

Eventually, the grey space in between completely takes over. An unspoken and shapeless emotional jumble that mushrooms with age and experience.

For me, motherhood brought my first real living experience of that emotional jumble. Having a disabled child brought me into a head-on collision of love and joy for the new little person in our lives, tangled inseparably with fear and sadness.

How could I sit amidst this jumble, hitting the top and bottom of the emotional octave, when it felt impossible to play in a major and a minor key at the same time?

I craved the emotional clarity and sharpness of younger years. The simplicity of childhood that wasn’t so much golden, as black and white. Suddenly it made sense, what the Grown Ups had said that I’d found so irritating, and had to put on a special face for.

As I have learnt since, humans are naturally hard wired to become accustomed to this grey space. As we age, our deeper understanding of mortality brings with it a phenomenon known as ‘poignancy’. The wisdom of elders which holds the knowledge that even negative emotions have to play a role in a truly good and fulfilling life.

 As we get older, it’s been proven that we get better at navigating seemingly contradictory emotions at the same time. (For the scientifically minded, there’s a brilliant study here).

We have to learn how to do this, otherwise how would we countenance waking up in the morning aged 90, when so many of our nearest and dearest are in holes in the ground?

Sometimes though, we have to get good at juggling and spinning our emotions far sooner than we are ready for. To learn to sit with sadness and happiness at the same time. To hold on to hope when we are afraid. To show compassion when we are angry. To stand up when we are weak.

Motherhood has knocked me down more times than I can count. As any parent of a disabled child will tell you, the complicated inner journey of parenthood is all the more frequently shaken and stirred for us. The emotional twists and turns are raw, real and often unexpected.

This also means that the ‘poignancy’ of life, that allows us as humans to co-exist with a jumble of emotions, is very present for us. We find it sooner, perhaps. At some point, it actually starts to feel okay, normal even, to feel sadness in happiness, and happiness in sadness. Emotions that have once been polar opposites now sit alongside each other in a harmonious mash up.

Now I just like to think of it as an early awakening. Because at some point, for pretty much all of us, shit gets real. Uprooted by cancer, disability, loss, grief, our unquestioned foothold on the world will falter. At first we long for solid ground but then we learn that there is no ‘getting back to normal’, just finding a new one.

Being a Grown Up isn’t defined by the appearance of an under neck chin bag (thanks for pointing that out, dear daughter) nor the disquieting ability to purchase alcohol without being asked for ID, it’s learning bit by bit to exist comfortably in the gloriously technicolour grey space. 

Carers: the noise is deafening but who is really listening?

“My greatest wish is to have another 20 years of life so I can continue caring for my daughter”

Brenda Quick, age 92, who cares for her adult daughter


There’s an inescapable story pulsing across our screens and pages this week. And no, it isn’t Brexit, nor the Tory leadership fiasco. It isn’t even Boris’s hair.

It’s the time of year when stories like Brenda’s get told. Brenda, who is 92, and caring for her adult daughter who has disabilities. Isn’t she amazing? (more on that later)…

It’s a week where we witness NHS and charity communications teams fall over themselves to show how much they do for carers. PR calendar gold dust. Find the good news that shows how compassionate and people focused we are, clamour ‘leaders’.

Abruptly aglow with human stories of caring, twitter is swirling with carefully curated candid personal video stories, hard-hitting top ten facts you didn’t know about carers, gnawing tales of hardship and heart string tugging statistics. Much of it earnestly co-created with real life ‘unsung hero’ human carers themselves, providing content for organisations who next week will sit and analyse engagement figures, reporting back to executive teams on the completion of their successful campaigns.

The more generous of heart among newspaper journalists will also tick the box that says they did Carers Week. Celebrated carers and raised important questions about ‘who cares for the carers’. A welcome nod to diversity and compassion in the world amidst the noxious noise of everyday news reporting.

Brenda’s story is part of just one impassioned media effort. As The Guardian reports today, for the last three years, the Oxfordshire Family Support Network has been running a project supporting family carers of adults with learning disabilities.

Brenda, along with a cohort of other older adult carers, will this week have her portrait displayed around Oxfordshire, presumably to celebrate their contribution and raise awareness of the difficulties they face. Today’s Guardian shares a gallery of these carers and a snapshot of their personal stories.

Most who come across this story will, I expect, come away thinking they are super people, facing unimaginable hardship, that they ‘couldn’t do it’ themselves. ‘How do they do it?’ I hear, echoing in heads on tubes and trains and at coffee tables among liberal intelligentsia.

But in and amongst all the noise, the clattering and searing of human hardship that sits so uncomfortably with those who do not know it, do those who can change things for carers really know what they are seeing and hearing?

When I read Brenda’s story and see that, at 92, she hopes to live another 20 years so she can still care for her daughter, I don’t think ‘superhero’, I feel the urgent necessity that so many parent carers feel, that we MUST outlive those we care for because we simply cannot trust the system to do it for us after we are gone.

An urgent necessity fed by the unstemming tide of human cruelty within our care system. Winterbourne View wasn’t the first. Whorlton Hall won’t be the last.

This is a huge burden to carry. As one of the carers in The Guardian’s piece described, it can feel like a life sentence. A life sentence that no amount of coffee mornings, hashtags, placards held up by MPs pledging ‘support for carers’ nor celebratory photo shoots can quiet.

Caring for a vulnerable family member is an extreme privilege. But it is a privilege that can test carers to their absolute limits of physical, mental and emotional fortitude.

PR exercises to raise awareness about the role of family carers are not going to change that. But there are things that could. Here are my top five:

  1. Create a safe and compassionate care system that puts humans, not commissioners and bureaucracy, first.
  2. Introduce a health and care staff vetting system that relies less on paper checks like DBS and more on personality and psychological profiling.
  3. Reduce the appointment load: Evolve the NHS appointments system so those with chronic and complex health conditions and disabilities can be seen in multi-disciplinary clinics, where a single appointment is required and a single report is produced.
  4. Use technology to reduce the admin load: Create a truly joined up health and care system where NHS and care reports can feed directly into the Department for Work and Pensions, to reduce the paperwork load on claiming PIP, DLA and Carers Allowance.
  5. And while we’re on the subject of Carers Allowance, I’ll add my voice to those who have been calling for a fair rate of Carers Allowance for years and who continue to be overlooked and neglected.

The truth is, carers are not superhuman, as much as we often have to be.

We are simply stretched in too many directions, by the 24/7 responsibility of caring, the perpetual befuddlement and frustration caused by NHS and social care admin, the necessity of trying to hold down some kind of employment or income generation because there is no viable financial safety net to support us while we care, all on top of attempting to spin the domestic plates of everyday living.

No amount of coffee mornings, or carers support groups, or carers voice networks can ever make a true difference. Most of us can’t get there anyway, because we’re too busy, you know, caring.

If you are a decision maker in government, the NHS or social care, please stop holding up placards and posing for photos on social media. And maybe have a look at my ‘top five’ instead.


Your child is disabled and has no diagnosis. Why did you stop asking why?

Your child is disabled and has no diagnosis. Why did you stop asking why?

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…