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.

Hearts and Bottles

There's a beautiful book by the awesome Oliver Jeffers, called 'The Heart and the Bottle', the essence of which is the idea that we have to be connected to our feelings through our emotional 'heart' and, if we try to detach that heart from our very being, we simply cannot feel - at least that's how I interpret it anyway. It reminds me of a story I used to teach called 'The Warlock's Hairy Heart' by J.K. Rowling, although that's a bit more bloody and gruesome: probably not one for the smalls.

Anyway, the reason I am rambling on about these stories (and at risk of slipping into 'teacher-mode') is because at the weekend, I had a really lovely day. My intention is not to be Mrs Smug of Smugsville - if that is how I am coming across, please take comfort from the fact that there were at least three epic toddler tantrums and a not-so-near miss with some dog poo - but more to try and capture a moment. I'm a firm believer in the mantra that 'nothing is permanent', be it good or bad and sometimes, I wish I could take those lovely moments, and a bit like the heart in Jeffers' book, just bottle them.

Instead, I capture them in photographs, albeit, on my trusty iPhone and with no skill whatsoever. However, I'm also making a conscious effort not to stage and fixate on photos, for fear of missing that moment and separating it from my heart.  Saturday afternoon in a gloriously sunny Brighton was the perfect back-drop to some spontaneous snapping, but I also made sure that my heart and soul actually felt and connected to the bright sunshine, the breezy beach, the madness of the pier and the sheer joy on Dexter's face. And my stomach definitely connected to the delicious dinner at Yum Yum Ninja. Now if only I could bottle the taste of their duck pancakes and beef skewers...

I heart Instagram!

Like many other avid social networkers and bloggers, I am a huge fan of the natty little app that is Instagram. I would go as far as saying I have an obsession with this clever technological gizmo which means I am one of those people who documents, well, basically EVERYTHING!

Despite the fact I am a complete over-sharer, as I'm a teacher, I do have my Instagram account (and personal Facebook page) set to private. However, I do love the fact that having Instagram on my phone reminds me to capture life's special little moments, whether they involve family, friends or a particularly delicious lunch.

A distinct downside to digital photography is the lack of photos I have in print and therefore on display. It was with this in mind that I took advantage of a special offer with a company called Polargram which meant I got 48 Instagram prints delivered for just under £8 with free postage - thanks for the tip-off, lovely friend, Hannah! They're really good quality and mimic the Polaroid style. This is not a sponsored post by the way; I was genuinely impressed with the quality, service and price.

A quick browse of Pinterest generated some display ideas and I was particularly taken with the idea of displaying the prints in the shape of a heart; it seemed to fit my ethos for using Instagram in the first place. In the spirit of personalising the new-build box, there can surely be no quicker way of feeling at home than to display favourite photographs.

It's up on the playroom wall. I'll admit to having some help with the straightness and symmetry from Mr W, but we're both quite pleased with the results. I have thus far resisted the temptation to Instagram my Instagram - how very meta!