Happiness is...

Almost a fortnight ago, I broke a protracted period of radio silence with a blog post about our life with wonky kids and I was utterly overwhelmed by the response. Thank you for reading, responding, reassuring and supporting: truly, I was touched. 

A number of people alluded to my 'happy list' which I keep on my phone as a token nod to mindfulness and a quick-fix virtual cuddle when I need a reminder that there are regular patches of sunshine in the s**t storm that sometimes engulfs us.

The list doesn't contain the biggies like family, friends or the very existence of Jude Law. It's not aspirational. Despite my left-leaning values, I can categorically say that I would love to win the lotto, that the money would change me and that yes, being a millionaire would make me very happy indeed. But, whilst placing my tongue very firmly in my cheek, I also know that an enormous bank balance, a stable full of horses and a wardrobe filled entirely with latest season Cos and Whistles are about as likely as Dexter developing an irrational fear of trains.

No, the happiness has to be the every-day, the humdrum, the banal but beautiful, the flashes of sublime simplicity and the nurturing security of the present.

It's been *quite* the week. The world is yet again mourning the loss of the great and the good in the public eye. Victoria Wood's untimely death yesterday, has left me reeling on a scale I thought impossible for someone I never actually knew. Social media is currently exploding with tributes to the timeless talent of Prince. Yet again this week, we are dealing with serious illness in our own family and tentatively tackling a day at a time. 

My happy list is getting a bashing. But it helps. 

I'm sad this week. Sad about life's cruelties, facing uncertainties and Delphi's first birthday looming on the horizon: a stark reminder of both a challenging year and the significant developmental delay she lives with. I've cried. I've talked. I've shared. And I've opened the 'notes' app on my phone and read, to remind myself of the following...

My happy list

• Friday night wine: there is nothing like a large glass of something cold, white and preferably New Zealand in origin at the end of the working week. I try to wait until 7pm but sometimes. Well. Rules were made to be broken.
• Falling asleep in front of the Graham Norton Show: I love Graham Norton. I love the guests he gets on his show. I love Friday night wine (see above). I usually see about ten minutes, fall asleep in a pool of my own drool on the sofa and wake up for the band at the end. Unless Jude Law's on the show when miraculously, I keep my eyes (wide) open for the whole thing.
• Listening to the radio in the kitchen: or not really listening to it but just enjoying the soothing cadence of chat and music. I pretend to listen to the really clever bits on Radio 4. I shamelessly LOVE Simon Mayo's 'All request Friday' show on Radio Two - it's like a happy list brought to life.
• Great fiction: I don't read enough. I don't make enough time for reading. My brain is addled by the 140 character laser show that is too much time on Twitter. But when I do get into a great book, that's it: I am in for the duration. The sort of book that I am gagging to be in bed before 9pm for so I can get a good hour of literary absorption before collapsing with exhaustion. 
• Hearing 'Mummy!': I'm not sentimental about parenting and I'm quite anti the glorification of motherhood (there's a whole different blog post there) but there is nothing like hearing my best boy calling 'Mummy!' Dexter had a significant language delay until he was over three. We thought for a while that he may never be verbal. We have no idea if Delphi will develop speech and language. The 'mummy' phase doesn't last for long and it just makes me smile - unless it's said repeatedly in a whining voice, in which case, it is not smiling going on in my head...
• Free Waitrose coffee: does this need any explanation?
• 'Gogglebox': I swear the essence of humanity is contained within this show. Plus, it's a good way of catching up with the week's tv with a glass of Friday wine before falling asleep in front of Graham Norton.
• The first cup of tea of the day: I'm northern. It's lifeblood. It makes everything better.
• Bright autumnal days and the nights drawing in; sunshiny spring days and the nights getting shorter: I'm a real seasonal inbetweener. I care not for the extremes of winter and summer. Give me crisp, fresh & bright and weather that requires opaque tights and a cardigan (which I have to have surgically removed, mid-August).
• The view from the front of our house: we live in a new-build box. A number of my earlier posts focus on trying to give it some character. One of the reasons we picked this house on the development was for the view of the meadow opposite. I like to stand at Dexter's window and watch the sky and the changing of the seasons.
• Too hot bubble baths: the kind that make your skin blotchy and your heart beat at an alarmingly quick rate. Perfect.
• Empty laundry baskets: happens about once a month for about twenty minutes.  Feels like the ultimate life goal.
• The smell of blue Comfort fabric conditioner: stays on your clothes for ever. Reminds me of my mum. Makes unpacking the hospital bag, when Delphi has an extended stay, that little bit easier. It's called COMFORT. 'Nough said.
• Danish pastries: scandi + carbs = win. Double win if custard or apples are involved.
• A Pinterest binge: I mean like a good couple of hours. I have a million boards. Find me here.
• A great tv drama series: I rarely watch stuff with actual plots but when I'm hooked, I will not be disturbed. Sorry, but I will have ignored your call if it was during 'Doctor Foster' or 'Marcella'.
• Going back to sleep after an early start: a cruel Saturday morning 5.30am wake-up can be cancelled out completely by an 8.30am-10.30am snoozedown.
• All four of us in bed with no immediate plans: as long as Dexter isn't kicking one of us in the head and Delphi hasn't vomited. Not quite the stuff of Athena posters then.
• A quality pub roast: there must be Yorkshires, good gravy, an open fire and broadsheets.
• My sleeping children, all tucked up in their rooms at the top of the house: the smalls reside on the second floor of our silly, skinny house. Our room is below. I forget their differences when they're softly snoring away.
• A spontaneous walk by the sea: our favourite beach is a 35 minute drive away. There is nothing there but beach and a couple of small cabins for coffee and cake. It's perfect.
• New knitwear: I am made entirely of spaghetti with low blood pressure. I am always cold. Knitwear brings me immeasurable joy.
• Riding lessons: I HAVEN'T BEEN FOR SO LONG. I need to sort that out. Ponies are my jam.
• Random repeats on telly of Peter Kay's stand-up shows: my childhood resonates with most of his anecdotes. Comfort viewing.
• Pret tomato soup & artisan cheese baguette: my pregnancy craving with Delphi. We spent Mother's Day in Pret at my request last year. Let's not dress it up: soup and a sandwich is the lunch of kings.
• Girls' nights: all too infrequent these days but always oodles of fun when they happen. Love my ladies. All of them.
• New stationery: nice pens, mechanical pencils, jazzy post-its. Ooooooh.
• A house full of visitors: our house is a bit quirky in layout and design. It comes into its own when people come to stay. And that is what gives it character.
• Trying a new recipe that's easy and works: whilst knowing I will make it approximately 13 times in one month and then never attempt it again.
• B E D

'Night! x

It is what it is

I have long been a fan of makeover shows, 'DIY SOS' being a particular favourite. Who can resist a combination of sleek, Scandi-inspired interiors, burly 'trades' shedding the most genuine of tears and at the heart of the show, a family in dire need of help? Often, said family has been mid home renovation when their lives are turned upside down by a family member facing life-altering challenges. My own favourites are those with children with profound difficulties. The tears I shed are designer wallpaper-fuelled catharsis. I look on, full of admiration for the exhausted and beleaguered parents who are beyond grateful for a luxury ground floor wet room with space for a wheelchair and stylish tiles that belie the painful visual reminder of the wholly necessary equipment such as hoists and safety bars. I, like thousands of others I'm sure, feel desperately sorry for those for whom parenthood has delivered the cruellest of blows, whose lives have changed irrevocably. And then I turn it off. I forget about it. It's happened to someone else.

Until it happens to you.

I realise I haven't blogged since Dexter started school. I haven't shared on this forum our own life-changing event. I haven't 'joked' about the fact that at some point we may need Nick Knowles and the perennially emotional Billy the 'spark' and their crack team to make our tall, skinny house suitable for a little girl whose life we couldn't have predicted.

I actually think it was when Dexter started school that my gut started twitching: my 'mother's instinct' began niggling away at me that something wasn't right. As I started the school run with Delphi in tow, she was never awake. But she wasn't awake the rest of the time either. 

'Aren't you lucky!' various well-meaning fellow parents commented. 'And she sleeps through the night too. That won't last.' 

But it did. Around about October time, my sleepy little dormouse did become more active, but the violent body jerks and uncontrolled eye movements dismissed by three professionals as nothing more than common reflux, were in fact, infantile spasms - the manifestation of a rare epileptic condition called 'West Syndrome'. 

Our lives changed irrevocably.

I could write an extremely lengthy post on the MANY appointments we've attended, the number of procedures Delphi has been through and the variety of medications she's endured in her short life. I won't. I won't because as we face life with a child with very probable disabilities - neurological, physical and visual - a significant developmental delay and partially controlled seizures, we have learnt to live in the moment. The future is too overwhelming; the what-ifs too numerous; the worst-case scenarios too unimaginable.

So how do we live? We try to remain optimistic: no formal diagnosis of the cause of Delphi's difficulties means no clear prognosis for her future. Whilst she has a funny little brain (as seen on her MRI), who knows how those pathways will form and reform? I have recently been put in touch with a parent of a child with a similar story to Delphi; this little girl is making amazing progress and is a complete inspiration.

We keep a sense of perspective and a sense of humour. I have genuinely asked a very senior ophthalmologist if Delphi is in with a chance of having a 'special, clever dog with a luminous tabard who we can take in Waitrose.' At one of our many London appointments (Evelina Children's Hospital is an outstanding institution), during a very serious conversation with a senior neurological registrar, I asked if Delphi was ill enough to merit a One Direction reunion at her bedside. Turns out she isn't.

We are immeasurably grateful: for our families who are strong, supportive and loving; neighbours and friends for kindness and practical help; our wonderful NHS and its many committed, compassionate and competent staff.

We take pleasure in the ordinary. The banal. The mundane. I keep a 'happy list' to practise some mindfulness and remind me of simple pleasures. It features the smell of our fabric conditioner, the nectar that is the first cuppa of the day and Friday night wine (scrap that, just wine).

I listen to the radio. It's the beating heart of our kitchen. There is something so comforting about the combination of the spoken word and music. Through the wonders of social media and just because she's bloomin' lovely, I have developed a Twitter connection with Lauren Laverne. She checks in on how we're doing and I will forever be grateful for her dedicating Bob Dylan's 'Shelter from the Storm' to us during a particularly lonely and worrying hospital stay.

Social media has come into its own. Our girl has her own unofficial fan club on my Instagram and Facebook pages. People say the kindest things but I do steer clear of those who tell me she's a 'gift' or we've been 'chosen'. If I could fix her, I would. For her.

We talk. We're honest. We're open. We continue as a family. Delphi has been on A LOT of trains in her short life and train-mad big brother Dexter is more than happy to attend the London appointments - to be fair, I need him to navigate the South Eastern rail network.

And we love: our children, each other and life. It so happens that Delphi's journey is but a small part of very challenging times for our families. Amongst serious illness, stress, uncertainty and worry, we cling to the mantra: it is what it is. We both go out to work: Delphi has a wonderful childminder and we need 'normal' - whatever that is anymore.

I still tune in to the odd episode of DIY SOS. Some of the stories now resonate strongly. I still wonder if we might need Nick and team in the future. And then I bring myself back - to treacly tea, to the moment, to unconditional love.

Starting school

Hello, blog fan(s)! It's been a while. Dexter has started school and our lives have been dominated by a new routine: no bad thing as we were all starting to unravel after a lovely but long summer. And so I thought I would take a moment to reflect on this whole new phase in the boy's life - indeed, in family life as a whole.

10th September marked Big D's first day in the world of education. We joined the glut of smiling first-day photos clogging up social media and I took a VERY excited four year old to the place where he will spend much of his young life for the next seven years.

Well, what have I/we learned, almost three weeks in?...

I'm not a complete tin man and I do have a heart. I am a largely unsentimental parent. I'm kind of cool about the fact that children grow up and I tend to embrace - rather than deny - each new stage. I am notorious for not being attached to the material 'stuff' that acts as mementos of the baby years; I regularly try and flog outgrown clothes and toys. In fact, sometimes, I even will the next phase/age to start. However, I didn't realise just how much my heart would hurt seeing my baby in a proper school uniform and looking so tiny in his beautiful big classroom, especially as his small reception class is usually combined with Year 1 and 2 students. Is he really big enough to be going TO SCHOOL?!

My organisational skills have been tested to the max. As a teacher and self-confessed control freak myself, I pride myself in having a sound grip on my professional and personal life. I'm organised; I get stuff done; I write shit down; I don't lose things; I label everything (even my box of labels). Heck, I mark books in alphabetical order. Really. Nothing has prepared me for the whirlwind of admin - mum-min if you please - required in being the parent of a primary school child. Newsletters, homework, cake baking, school fete contributions, birthday parties, trips, PE kit, outdoor learning clobber, school lunch choices and harvest festivals have got me chasing my tail. I need a PA - and a good one at that. Plus, I get more texts from school than my actual friends. I'm not sure how we are going to manage this when I'm back at work doing a job that requires plate-spinning and juggling skills worthy of your finest circus.

The school gates are not the setting for 'Mean Girls 2: the reception years'. I am not shy. I pride myself on having good social skills and emotional intelligence. And with a face for radio, I've always worked that little bit harder at being engaging and hilarious, which I am, obvs. Modesty aside, even I had the mild fear about the potential unfriendliness of the school run mums - and dads. My fears have been proven to be well and truly unfounded. All of the other parents are lovely. It's a tiny village school which prides itself on having a family feel to it and it does. People smile, chat and marvel at the fact that I park a permanently snoozing baby outside the classroom every morning. In the first week or so, a number of parents commented on how their children had already told them a lot about Dexter; he's the 'funny' one apparently. Oh good. That aside, there are definitely a few mums I wouldn't mind having an evening in the pub with and that can only be a good thing.

Speaking of pubs, school night wine o'clock is a no-no. Words I never thought I would write. The hectic-ness of getting three of us fed, dressed and out of the house on time, without forgetting anything (see above) means I live in fear of being slightly foggy/sleeping through the alarm or just feeling any rougher than your average 6am start makes you feel. I am all about the peppermint tea of an evening. Until Friday...

Weekends are precious. For rest, recuperation, family time, extended periods of pyjama wearing and getting on top of that school admin. And wine. Friday really is Fri-yay!

The school day is really short. D's school is a 20 minute drive away: our choice, made for a number of reasons. It's actually very close to the school I work at, so there will be a whole different dynamic when I return to work after maternity leave. By the time I have got home, done some chores and kept Delphi in her feed, play, sleep routine, it's time to go back and collect a usually happy but EXHAUSTED school boy.

School is KNACKERING. 'WE KNOW!' yell a billion teachers. Of course, I already knew that, but I have never seen the boy so strung out with tiredness. We've slipped into a routine of him having a bath when he gets in and getting into pyjamas before 5pm. Bedtime routine starts at 6pm. I think this may be even earlier when the clocks change in a few weeks. He had been holding it together behaviour-wise at home, but note past tense. This weekend, Big D has been all kinds of challenging. I've been blaming the chuffing 'super moon' but I know it's because his eyes itch with tiredness as he gets used to a whole new set of rules and routines. I am already planning on us spending half term in a dressing gown watching 'Thomas the Tank' on repeat.

Despite having several life 'grown-up' boxes ticked, I have never felt my 37 years more since having a child at school. I read this post recently from the lovely Alice, on moments that make you feel like a mother, and nodded in agreement throughout. As most days, I feel like I have accidentally been given two smalls to rear and at some point, someone will pick up on this mistake, I have never felt more of a 'grown-up' than since D started school. Maybe it's the 'mum-min' or the constant pressure to have a set of uniform washed, dried, labelled and ready to wear, or possibly that I have already written my first absence note (pesky stomach bug), but despite 15 years teaching other people's (teenage) children, standing in that playground at pick-up, I feel like an actual adult.

Does any school have adequate parking/enough room for school traffic? In short, I am guessing no. Some afternoons, I leave an hour before for a twenty minute journey, just so I am not stressing about finding a safe place to park. Annoyingly, this eats into the day. On the plus side, I often take my Kindle: the reading time really mounts up and I feel less guilty about forgoing my evening read for a 9.30pm face plant onto the pillow.

Schools are bloody brilliant places. I know, I am biased because I work in one but the British education system is much-maligned, mauled by the press and all too often, simply used as a pawn in a political game. But the people who give their hearts and souls to the education and welfare of our children are absolute heroes. I always keep in my head a line from the deputy head in 'Educating Essex', the first in the 'Educating...' franchise. To paraphrase, he tells a particularly recalcitrant student that never ever in the rest of their life will they be shown the same amount of patience, kindness, support and understanding in the 'real world' as they are at school. Dexter is surrounded by kind, experienced and tolerant adults for the whole of his school day, and if that's our education system that he's just starting out in, then I want in.

Now, roll on half term...