We lose ourselves in books, we find ourselves there too

 

As a lifelong lover of literature, I have always cherished the ability to pick up a book and disappear into it. To make sense of the world around me through stories. To try on situations and characters for size, within the safe confines of someone else’s words and the expanse of my own imagination.

So when I lost the ability to pick up a book and disappear into it I knew for sure that something was wrong. New parent tiredness, perhaps. Pick up any top tips article on ‘things you should do’ before your first child arrives and reading is always on there – “read books!” they say, for you won’t have the time nor the inclination once you have a newborn.

How true this was. So after Bea was born I stepped away from the bookshelves in the confidence that one day, when life was less baby armageddon, my reading mojo would return.

But just as I was coming out the side of baby armageddon round one and starting to feel like a trip to Foyles to browse for something wonderful to disappear into, Orange arrived.

A gentle and unassuming little soul, Orange arrived into the world as a sweet natured baby who slept well, fed well and demanded not very much at all. There was no baby armageddon this time. But just as we started to find our stride as parents of two, and the newborn haze began to lift, the foundations of our lives shifted.

It wasn’t a sudden shift. It wasn’t even definite. In fact there were many times when I persuaded myself that our lives hadn’t changed at all, and that I was panicking unnecessarily about Orange’s stiff neck and floppy little body. Because no-one knew what they meant or even wanted to hazard a guess. But the uncertainty grew over me like a mushroom cloud and before long it had consumed my every thought.

I wanted so much to distract myself from the fear that had cuckoo nested itself into my head. To pick up a book and transport myself into someone else’s thoughts, emotions and dreams.

But I could not.

Since those early days of uncertainty with Orange, I have had many a false start in trying to put a light back under my reading mojo. For me, for whom great literature is pretty much up there as my greatest passion, this reading roadblock was like losing a large part of myself. I had both lost and found myself in books, always, and now I found myself totally lost inside my own head. Locked in by puzzles I could not solve and fears I could not quell.

I had always believed that I would relish finding both adventure and comfort in books, no matter what life threw at me. Reading was both a joy and a refuge and yet here I was unable to even pick up a book beyond the smallest collection of well-thumbed and dog-eared Murakami and Fitzgerald favourites. Familiar territory.

Looking back now I know that these three or four books held me in a place where I felt safe at a time when everything else felt dangerous. Where emotions would not spring out at me, unexpected.

So I knew that when my Christmas list this year consisted almost entirely of new reads, that I had turned a corner. A most definite shift.

I had just finished reading ‘Extremely Loud and Incredibly Close‘ by Jonathan Saffron Foer about a little boy’s quest to solve a mystery left after his father’s death. A tenderly written story that cleverly interweaved personal tragedy with the enormity of world events, both recent and historical.

For the first time in years I had been able to allow myself to be filled up by the lives and emotions of the people in the pages I held in my hands. To live their lives in my head. Because my head was no longer full solely of my own.

And so I did what I love to do almost as much as reading. I started a list.

Reading list

And a Pinterest Board

I feel confident in saying now that my reading mojo is most definitely back. But also that I know now the books I can turn to for comfort when life is a little too ‘full’.

And now I’ve got the bug back, I’d love to know what’s on your reading lists for 2016. What have you loved or hated? And what are your go-to comfort reads when you are in the trenches?

“Books are the mirrors of the soul”

Virginia Woolf

 

Lifejackets on

“Always wear a lifejacket, it could save your life!”

Living right on the shoreline, we have learned to have a healthy respect for the water. For all its beauty, the sea is a powerful and dangerous thing. If I was the boating type, I would know that without a well fitting lifejacket, I would struggle to keep my head above water if I went overboard.

Given that I am absolutely terrified of ferries, yes ferries (thanks, TV news, for imprinting the Debrugge disaster into my brain at a young tender age), there won’t be much boating action happening anywhere round here anytime soon. But if I was to step onto a boat, I would certainly be doing so with my lifejacket fastened tight.

Sometimes I have likened our experiences of raising Orange to what I imagine it must be like to sail the high seas, if you are a sea-legged kind of person. Periods of calm, serenity, beauty, a feeling of deep connection with what life is all about (and, of course, rather a lot of fun), interspersed with raging storms that you have no choice but to keep your head and steer your ship through if you want to make it to the other side.

Life can be like that for any of us, I know, but in raising Orange we know that he will be dependent on us for life and we must equip ourselves for many a storm to come.

As Orange has got bigger, we have learned that we cannot do this on our own.

For the last few months, we have been testing waters of an entirely different kind. Orange has been going to stay with a respite carer for an overnight stay or two. He has just returned from his longest stay yet – two days and one night – that for the first time we were not too exhausted to enjoy.

For the last two days, while Orange has been waited upon hand and foot, utterly spoiled, and taken out to enjoy the winter sun at Mount Edgcumbe, Bea, Gavin and I have made the most of doing some of the most un-wheelchair-friendly activities we could find.

Seaton's Tower

We have climbed lighthouses. We have ridden bikes. We have walked the seafront. We have swum, splashed and goofed about in swimming pools. And we have eaten rather a lot of ribs. And ice cream.

Ice Cream

The time we have spent together has been golden and we have cherished it because we have been able to focus on Bea. And on ourselves. In a way that we never can when Orange is with us because his needs always have to come first. As they should, because he is the least able to help himself, but as much as I love us all being together and experiencing things as a family, I will be the first to admit that it is hard work.

Which wheelchair shall we take – the all-terrain or the one that actually supports him? Will the wheelchair get in the door? Will there be steps? Will it be warm enough for Orange? Will it be too noisy? Will there be any food we can feed him? Will there be anywhere to change him? What will we do if he doesn’t cope? Bags, medication, drinks, spare clothes, iPads, wheelchairs and an Ernie are minimum requirements for a family day out.

Sometimes it goes well, sometimes it doesn’t, but I don’t think I realised until we had a day out without him, how I am always on high alert and how this can impart an underlying aura of tension into any family activity, no matter how familiar or fun it might be.

Having a day just with Bea meant we could do things on a whim. It’s sunny, great! Quick trip to The Hoe.

Oh look, the lighthouse is open, shall we go up it, YES!

In our enthusiasm, neither Bea nor I remembered until we were halfway up and fully committed to the task, that we both harbour a fear of not only heights but tight spaces. Imagine our joy when we realised, half way up, that it was getting narrower and narrower, steeper and steeper… but because we could focus solely on each other, we worked our way through those fears together.

One step at a time, we climbed. One foot in front of the other, until we reached the top.

Lighthouse top

As a sibling-carer, Bea has learned too young that life can be frightening and unpredictable. That people get sick, and sometimes they die, and not always because they get old. I know she feels the weight of unpredictability in our lives and has taken on more responsibility that she should have for keeping us all afloat.

She has also made some big sacrifices in her life. Age seven, she knows how to give CPR and call an ambulance but she doesn’t know how to ride a bike. With respite care, we can ease some of that burden for her, and for ourselves too. As well as climbing a lighthouse, we were able to take Bea out to ride her bike today for the second time ever.

It’s taking a lot of adjustment to get used to sending our little boy away while we go off to have fun without him. I won’t pretend that I haven’t been eaten alive inside by guilt about that and I won’t pretend that I don’t feel sad when he is not with us.

I do.

And I wish he was right there with us, climbing lighthouses, riding bikes, and splashing and duck diving in the pool. But we have to be honest with ourselves, and fair to each other, in recognising that this isn’t the way our lives can be. They just can’t.

Without respite care, we would be overwhelmed and overwrought. Exhausted. And totally unable to steer our ship through the storm when it comes.

When I am feeling guilty about sauntering easily down the seafront, gazing out to sea and chatting to my little girl while my little boy is being cared for by another, I have to remember that actually it’s good for him too. If he is to have independence, relationships, freedom and confidence in his world he must learn that, with careful choices, he can have fun and be safe outside of his immediate nuclear family.

He has a right to adventure, too. I mean, just look what he gets up to when we’re not around.

Orange wig

“I knew, when I met you, an adventure was going to happen”

Winnie The Pooh

Lifejackets on, folks.

A Cornish Mum

Don’t lose your head

When our first babies reached a year old, my friends and I cheerily raised a drink or two to celebrate having kept alive our firstborns for an entire year. Giving birth to, feeding and growing a whole actual human seemed like such a momentous achievement and yet we were able to nonchalantly joke about keeping our offspring alive because we had never yet faced a situation where their lives were ever remotely at risk. We just had to, you know, feed them and love them and stuff.

Even with Orange, we’ve been extremely lucky that he was born healthy and in the first 18 months of his life, faced no immediately threatening health issues, despite his developmental complexities. Of course he threw us a major curveball in the autumn of 2012, when we were just days away from relocating to Cornwall, in that he developed a seizure disorder and gave us the fright of our lives by having six seizures in 24 hours that each caused him to stop breathing.

Our experiences of the NHS have shown us that there isn’t much that can fluster a High Dependency Unit paediatric nurse, but there were several moments during that hospital stay when we were not the only people in the room that had our hearts in our mouths wondering if our boy would ever take another breath.

But he did.

Mr K wrote a guest post for the blog at the time that said everything I was too numb to articulate.

It was the greatest fear I have ever felt and I never wanted to step inside that house or that hospital again. Of course we didn’t have to, for we soon left it all behind to start a new life that represented hope, serenity and a happier future. An escape.

Several days and one extremely nervous journey down the A303 later, we had left well behind us the memories of our boy, blue and lifeless on the kitchen table, the fluorescent hustle of paramedics, the sterility and freneticism of the resus unit, and the deep, deep fear of losing our boy to a type of epileptic seizure which not one specialist could accurately identify.

With a little trepidation, and a lot of hope, we settled into our new lives knowing that it was likely Orange would face these seizures again, but with every day, week and month that ticked by, we slipped further and further from a paralysing state of high alert to a more relaxed way of being.

We worried a little less about who we left Orange with. We allowed ourselves to be excited about him starting nursery. Even letting the telly babysit him while I went to the loo or made a cup of tea became a possibility again. We slept a little more, instead of lying with one ear attached to the baby monitor, tuned in to every rise and fall of his breathing.

With only a few absence seizures here and there, and one small seizure last summer with a slightly juddery but well oxygenated and still breathing boy, his epilepsy was well controlled. We felt confident we knew what we were doing, and I didn’t hold my breath every time Mr K travelled for work, wondering if now would be the time Orange would throw us a big one.

But last week, he did.

With Mr K in Dallas, I was on bedtime duty for the fourth night in a row, and in major need of a gin and tonic. Orange, home early from nursery with a fever, was in bed. Just Beep to contend with. At last, she was settled. And then a little voice piped up.

“Mummy, Orange’s breathing is giving me nightmares. He sounds like a monster.”

I listened at the door.

“He’s just snoring Beep, get back into bed and I’ll go and tuck him in.”

As I opened the door and unlatched his bed, the ‘monster breathing’ stopped. I raised the blanket to tuck him in. Pulling it over his little body I watched for the rise and fall of his chest before closing his bed and saying goodnight. Only that rise never came.

Lifting him from his bed, his stillness crushing me cold, I knew we were here now. This was it. It was a bad one. My head torn between fear for my boy’s life and sadness for my little girl that here she was again, watching her brother clinging on to life.

“He died, but he’s ok now…” Her three year old words echoed in my heart as I dialled 999 and held his airway open.

Desperately following the life support instructions of the emergency operator, I gave him rescue breaths, Beep watching his chest and his colour all the time.

“He’s breathing in mummy. He’s breathing in. But he’s grey mummy, he’s still grey. Orange, you’re going to be ok, the ambulance is coming. He’s breathing mummy, he’s breathing.”

Orange took tight, laboured breaths as the seizure constricted his chest. In, and out. In, but not out. A pause. In again, in again. And out. A pause too long. More rescue breaths.

As the ambulance arrived, my little six year old Beep took charge, running to open the door and directing the crew up to where we were. Bravely, she watched as Orange was intubated on the landing floor. Calmly, she cuddled a favourite toy and went without a tear or a fuss to sleep with our neighbours as I frantically grabbed medication, a hoodie, shorts and a phone charger and leapt into the ambulance with Orange, tubed and bagged and still in the grips of the longest seizure he had ever had.

His pyjamas cut, wires all over his body, oxygen mask over his little face, we raced through the dusky lanes to the whine of sirens and the flash of blue lights. Rescue medication given. But still no change in him. Holding on to the inside of the vehicle as we sped up and down through the windy Cornish countryside, I watched Orange, rigid and fighting for breath. And I lost hope. Gave in to fear.

Is this how it’s going to happen? With Mr K abroad and Beep with no family to comfort her? It’s been 30 minutes and he is still unconscious and struggling to breathe. We’re going to lose him, right here on the A38 in the back of an ambulance, aren’t we?

I wonder when to call Mr K. If we’re losing him now I don’t want to go through this alone. I text him.

In an ambulance. Orange not breathing.”

A second dose of diazepam. I watch the screen as his oxygen sats hover around 50.

A Texas number flashes up on my phone. But I don’t know what to say. Get home? But how? Your son might not make it? But maybe he will? And then I’ve created fear where none belonged.

But then the sats were creeping up. Up and up, 60, 65, 72, 88. The heavy silence in the ambulance was broken by the paramedics.

“He’s going to be alright, he’s doing alright now, he’s doing ok. He is, he really is. Go on, tell his dad he’s going to be ok!”

As we arrived at resus, a now distressed and angry Orange was wrapped in a blanket and carried gently into the hospital. Wired up to monitors, and soon falling into a post seizure unconsciousness, Orange let his exhausted little body rest and I completely fell apart in the arms of my mum who was waiting there for us, not knowing if he would arrive alive or dead.

We watched and waited for Orange to regain consciousness. We watched and waited for any sign of another seizure, expecting it to happen as it had in resus three years before. And again, and again on the ward.

But he surprised us. History did not repeat itself.

In fact, by midnight, riding up to the High Dependency ward he sat up on his trolley and had a good giggle about the fact he was naked in the hospital in the middle of the night.

We were looked after wonderfully on the ward. After a moment of black humour shared with friends about the prospect of a night upright in a hospital chair, a kind nurse brought me an incredible recliner and a pillow. Mum brought me an enormous bag of snacks and a duvet, and some of the essential items I’d forgone for shorts and a winter hoodie in my panic. And the next day, kind and wonderful friends brought in breakfast, coffee, books, toys and much needed hugs.

Our wonderful village and lovely friends, and mum, supported us and held us up when we needed it most.

I thank you all so much everyone who looked out for us, looked after Beep, visited, messaged and called Mr K to make sure he was ok too. I hope we can return these kindnesses in the future.

So now we are home, the adrenaline has subsided, and I am trying not to lose my head. We can’t run away from the fear this time. I can’t leave 250 miles behind me the landing where I kept my son alive while waiting for an ambulance. And I know it probably won’t be the last time I have to do so.

This time we have to face it.

Feel it.

Learn to live with it.

And not be paralysed with the fear of what may come. We must fill our heads and hearts with new dreams and new hopes instead.

 

Of storms, ships, hopes and milestones

2013 has been the first year in a line of many that I can remember that hasn’t centred around either a new house or a new baby, or planning for one or both of the above. After a constant flow of change and upheaval, this time last year we were looking forward to beginning our first full year in our new lives, and hoping that after the turmoil of 2012, the coming year would bring with it tranquility and contentment. On New Year’s Day 2013, I waded out of the sea carrying the hope and vigour only a refreshing winter sea swim on a crisp morning can bring.

Looking back at the months now passed I see I should have paid greater attention to what the sea was telling me that morning. Intuition should have told me the raging walls of water, relentless and unforgiving in their pace, were playing out a revealing metaphor for the year ahead. Not unsurmountable, but unremitting.

Today someone asked me to sum up our year in three words and I realised that I couldn’t. After a moment, what became clear is that, actually, I didn’t want to. Not because it has been bad, necessarily, there have been some very happy times, but because it has been relentless. Every time we have needed, or wanted, to lift a foot from the gas awhile, we’ve had to put it right back to the floor and push harder. Downtime has been squeezed into snatched moments, never fully able to relax, for the consciousness of work undone and tasks in waiting has never lifted.

This year, the enormity of life with an Orange in tow has pressed down on us unyieldingly, with too little time free to balance out the magnitude of the job in hand with frivolity and fun.

Really, we’re still novices in this new life, feeling our way around in the dark. There is no guidebook for this trip. No-one can tell us what the future holds for Orange, and yet there are challenges presenting themselves in the here and now that we’ve had to find ways to negotiate.

Basic things, like getting him in and out of the house safely now he’s a fully grown boy who can’t walk, getting him a pre-school (and eventually school) education when he can’t talk, feed himself or use the loo, keeping him safe in bed when he’s grown too big for a cot but has no sense of danger or ability to haul himself back up under the duvet if he falls out, keeping his joints from failing when he cannot weight bear, keeping him entertained and stimulated when he cannot access or interpret the world in the way a typical two year old can.

Getting all these things right for him requires hours, weeks, months, spent researching, reading, visiting, asking questions, filling in form after form, chasing, calling, emailing, and negotiating bureaucracy. Of course, I am eternally grateful that we live in a country where support and help is available but just figuring out what you need and jumping the hurdles to get to it is, or has been in 2013, a full-time job.

And at the end of 2013, I realise that this full-time job, along with my actual full-time job, plus the other full-time job of managing Orange’s therapies, oh yes and the other one I stumble along in trying to maintain a home, raise children and be a wife, friend, family member and active part of the community, has pushed me right up to my limit. Beyond it, probably.

With financial worries, a punishing work schedule for both of us and a turbulent year of ill-health and shifting relationship landscapes in our extended families, 2013 has been a pretty eventful non-event of a year. Stormy. Not in a dramatic thunder and lightning sort of a way, but a persistent gale, with the odd hurricane force gust thrown in for good measure.

But there have been glimmers of sunshine through the storm…

Friendships renewed. And that I am so thankful for.

Long, lazy, hazy days spent sun-soaking on the sandy shoreline.

The unbelievable and overwhelming kindness of strangers.

A blossoming sibling relationship with ferocious loyalty and the tenderest of love.

Orange has done things we thought he might never do. He sits up. He inch-worms across the floor. He laughs at the same scene in Peppa Pig each time when Daddy Pig sets the BBQ on fire and Miss Rabbit comes to the rescue. He holds his arms up for a cuddle and shouts with the disagreeability only a hungry toddler can. He giggles with excitement when he realises he’s on the road to swimming class and raises merry hell when Katy Perry comes on the car radio. He surprises us daily.

Orange, with all his Big Scary Unknowns and constant surprises continues to shape our lives, focus our hopes and influence our priorities for the years ahead. With less than three hours left in this weary year, 2014 stretches out in front of us fresh, clean, unsullied and full of opportunity. I dare not anticipate exactly what the new year will bring but I am hopeful. Gradually, piece by piece, our lives are starting to form into something a little less chaotic. I can see restored order beckoning on the horizon.

Tomorrow, I’m hoping for calmer seas. But what Orange, and this year closing behind us, have taught me is not to be afraid of the storm, just to learn how to steer the ship, and to be eternally grateful for small suns on grey days.

A couple of weeks back, I came across this riddle, inscribed on the wall at Eden. Simple words, hidden in the undergrowth. It was one of those little moments that 2013 taught me to cherish, when coming across something small but wonderful. This seems like a good time to share it.

Wishing you all health, hope and happiness for 2014 xx

 

“We will open the book. It’s pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.” 
 
Edith Lovejoy Pierce

Eclipsed

I realised this evening that, where this blog is concerned, I’ve been suffering from what is often gloomily referred to as ‘writer’s block’. Not for want of things to say but, I think, because so much has been happening in Orange’s world that I haven’t been able to mentally process it yet, let alone find something interesting or useful to say about it. I am pretty sure this is why I have shied away from the personal of late and bored you all to tears with such lacklustre prose about Rare Disease Day and NHS Change Day.

In truth, I suspect I’ve been having what a fellow blogging friend has recently referred to as an ‘eclipse’. (Have a read of her post, it’s very illuminating). In fact, I’ve probably had a whole series of eclipses (eclipsii?) in quick succession, with very little breathing room in between, but just enough for me to not really register that they’ve been happening.

When we first moved, back in October, we had a blissful few weeks where Orange had absolutely no appointments at all. Nothing. We had left behind the fear and terror of his first seizures, and really thinking he was going to die and not make it to Cornwall, in a house we no longer had to live in and a town we will never return to, and replaced it with the calming influence of the sea and hopeful anticipation of a new life. We had escaped all manner of misery and were riding high with the excitement of our dream finally becoming a reality. We were busy unpacking, settling in, making friends, socialising, madly planning which beach to visit each weekend, and cramming in as much as we could before Christmas. A bit of an extended holiday if you like, releasing the pressure valve of the past year and just being.

Since the New Year, a whirlwind of Orange Admin has screeched into full focus. We have been buffeted along between housing adaptation assessments, genetics appointments, 24 hour EEGs, blood tests, physio appointments, orthotics, occupational therapy, speech and language therapy, equipment assessments, the arrival of the scariest, mechanical looking beast of a chair, the standing frame, developmental assessments, kidney scans, Direct Payments assessments (for respite), Blue Badge applications, fundraising planning and various stilted conversations with The Professionals about Orange’s lack of diagnosis or prognosis.

The workload has been heavy. The conversations have been tiring and repetitive. The travelling and waiting room hours have left the remainder of time feeling a little meagre and frantic. The dawning realisation about the sheer amount of money it is going to take to provide Orange with everything he needs in this next stage of his life is earth shattering. The resulting reports, referrals and forms that need reading, understanding, filling-in, filing and assembling have brought on a special kind of brain fug that only a SWAN mum will understand. The amount of support we are getting is mind boggling. It’s wonderful but also tinged by the sad realisation that it certainly wouldn’t be offered if there was any doubt that we actually really need it.

In the middle of all of that Orange turned two which was a bit of a mega-milestone, emotionally. The line between baby and child has been firmly crossed and with it I’ve had to make a huge mental leap from ‘mother of a baby who needs help to learn stuff’ to ‘mother of a child who can’t walk or talk’. I’m holding on to a positive outlook about what this means for our lives because there is simply no point in doing otherwise, but in truth I know the intensity of the last couple of months has scratched away at the happy, shiny surface and planted beneath it some seeds of doubt which is why I haven’t been able to write with much warmth or cheerful observation about Orange of late. It’s funny, because the cheerful observations have been very much there, every day, but for some reason I’ve found it harder to share them.

My energy has been depleted and I lost a little bit of hope, I suppose. I’ve been forced to really look ahead at what the future with Orange might actually be like, and to plan for what might be significant challenges. Basic things like getting him in and out of the house. Getting to the car. Bathing him.

But somehow, the hope has to come bouncing back because without it there is no way I can find the energy each day to get on with trying to help Orange learn and achieve. If I let myself believe that Orange won’t ever be able to do anything, what would be the point in trying to help him?

The good thing about eclipses is that they pass. Thankfully the sun is back in full view and all pistons are firing again.

In response, Orange is doing his level best to act out like a typical two year old. He has developed a new blackboard+fingernails quality whinge, is snatching iPhones left, right and centre and creating oceanic tidal waves with his splashing in the bath. He’s also making a mighty fine effort at sitting himself up, watching and learning the rules of rugby, and keeping everyone in the room firmly under his governorship with his raucous roaring and loud boyishness. And I do believe he may even be trying to talk… I daren’t wish too stridently but Orange seems to have at least one word in his vocabulary. Car. Pretty cool, huh?

So no more dry, news-agenda related stuff from us for a while, I hope. Just a little more Orange, instead. And if you see any of that drivel again in the future, at least you’ll know why, and you’ll know it will pass 🙂 xx