8 Apr 2016

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.


  1. This is a brilliant post Katy and it sounds like you are dealing with things wonderfully. I'm so sorry that Delphi has this condition, it must be so hard to take but she is a gorgeous little girl. That picture is too cute! Xx

  2. Thank you so much, Katie, for reading & commenting. We take each day at a time and every tiny bit of progress with Delphi is amazing. She's a lovely girl and her brother adores her! x

  3. I'm following you all via Instagram and your incredible story. I wish we could meet up more and when you are able to that would be amazing. Whenever you need me know that I'm here X

  4. I've just stumbled across your blog & have really enjoyed the little peek into your family! Your writing is beautiful. Delphi sounds like an amazing girl & a true fighter! My little lady is coming up to 2 & has a whole host of issues that are unfolding as time goes on. We spend many hours at Great Ormond St, but our motto has always been the same as yours...'it is what it is'! My husband & I have kept our sense of humour (which sometimes makes the professionals feel a bit uncomfortable I think!) Sometimes the daily struggle of seeing her peers racing around, chatting & exploring the world, whilst my May takes on things in her own time can require immense strength, but I try to celebrate every milestone (however small), end each day on a positive note & not spend too much time visualising the future. Thank your your honesty & for making me smile & feel a little less alone!

  5. Just read this again. Love you x


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