The hare, the tortoise and the mountain. A true story.
I should have heeded the warnings. Listened to my mind when it was racing at 3am for the hundredth night in a row. Listened to my body when it creaked with exhaustion getting out of bed at 6am to start another day. Listened to my heart when it beat hard and fast as I rushed from one place to another wondering what I had forgotten this time. Listened to my voice when I snapped at my little girl for taking too long to brush her teeth in the morning.
But I didn’t. Because I didn’t want to hear it. I didn’t want to feel it. And I didn’t want it to be real.
Because as women we are supposed to be able to do everything, right?
I wanted to prove that I could. That against the odds I could still be a high achiever with a fulfilling career, hobbies I enjoy, a comfortable home and a happy family life. I wanted to prove that I could do all that while also caring and advocating for my disabled child and others like him as well as ‘living the dream’ a la Coast Magazine by the sea and holding the fort in one piece while my husband works away.
That I could take in my stride juggling school runs and homework and changing and feeding and administering meds and chasing appointments and test results and worrying and worrying over whether the latest chest infection or seizure would see us hospital bound again, while maintaining a professional and super productive work life in my job that I love.
And keeping house. And remembering to fill in the ticket requests for the school play on time, ballet and PE and swim kits and guitar sent in on the right day and party invitations RSVP’d.
A race against time every morning to get us all up and out the door, clean, dressed and fed. Coffee. To school on time. Traffic. To work. Coffee. Try to be professional and brilliant. Supercharge every minute with mindblowing feats of productivity. Squeeze more out of every day than should be possible.
But now it’s 5pm and it’s nowhere near all done.
Traffic. Traffic. School pick up just in time. Petrol pit stop and spelling practice in the car.
Children fed. Pyjamas on. Meds given. A quick smile and a cuddle. School bags emptied and filled. Post opened. Outfits ironed. Cats fed. Meals planned and bought online. Bins emptied. Piece of dry toast and some chocolate eaten for dinner. Feel my back twinge while I carry a growing boy up to bed.
Sitting in a dark bedroom every night while my anxious seven year old finds every reason not to let me leave or to go to sleep. She fights it. In the end, she sleeps. I creep out. Quick tidy up. Dishwasher loaded, floor swept, counters wiped, dryer emptied, laundry folded. Letters from the hospital read and filed. Emails to the adaptations manager, the social worker, school, a campaign group or two.
Work emails caught up on. A work project finished off in the quiet that only an evening alone on the sofa can bring.
Tweets tweeted. Sometimes about gin and sunsets. Usually about loos.
Worry about how we will ever go out as a family when we can’t change Orange in the boot of the car anymore and there are fewer bench and hoist toilets in the whole of the UK than there are normal loos in Wembley Stadium alone.
Realise I can’t fix that overnight and instead end up reading an article about terrible care homes in Cornwall and worry about Orange’s future. Wonder if I can live to 120. Realise I can’t and that I definitely won’t if I keep eating dry toast and chocolate for dinner. And worrying.
Worry some more. Blank out the worry by scrolling through Facebook, Twitter, Instagram, mumsnet and repeat. Social media oblivion.
I had come to think that this was normal. I had also come to think that if I couldn’t also fit in shifting three stone with an intensive fitness regime and clean diet, expanding my mind each night with the latest Ted-Ex talks and Booker shortlisters while also trying to write my own, being a solid support and confidante to those around me in their times of need, giving back to the communities in which I am a part both in the flesh and online, and renovating and decorating our tumbledown house into this schedule, that I was a failure.
I had heard and read too many times that all working parents face the same challenges and come to believe that I should just be able to get on with it without complaint and without dropping a ball. Because that’s what I thought the world tells you it’s possible to do and that if you can’t, you are somehow second rate.
That if I felt tired it must be because I am a weak individual and need to toughen up. That if I felt sad it must be because I am entitled and ungrateful. That if I found something hard it must be because I am stupid or lacking in sheer determination and grit that others seem to have.
That if I read enough motivational self-improvement books and stared at feel-good Instagram posts I would find my way to the top of this mountain.
Because anything’s possible, if you strive hard enough, right?
But this week I have realised that I have been trying to sprint up the mountain. And sprinting up a mountain gets you nowhere fast, other than altitude sick.
On Thursday, that’s exactly what happened. A difficult conversation at work that I would otherwise have taken in my stride tipped me completely over the edge.
For the first time in years I actually cried. And then I couldn’t stop. An avalanche on the mountainside that threatened to bury me alive.
The irony of this occurring inside a mental health unit at work did not escape me. But in fact, now I am grateful. Because it shocked me into realising that I need to slow down from that sprint if I am ever to get to the top and enjoy the view.
To remember that the hare did not win the race, the tortoise did. And that this is not a sprint. It’s an ultra-marathon.
I was never any good at long distance running at school. I’d always start too fast and get puffed out past about 400 metres. I have always been the hare, never the tortoise.
All through my life at this point I have given up and started again. Abseiled down the mountain to try a different one instead. Run to a different start line to sprint along another track.
But this time I need to find the right way to keep going. Not just because there is no choice but because I also want to.
I need to have faith that I’m in the right place, with the right people, doing the right things. Because in my heart, I know that’s true.
And so I need to adapt my pace. While I am pretty terrible at long distance running I know I can get there in the end if I slow right down.
Even when there are steep hills to climb.
The times I have tried to run since moving to Cornwall have taught me that. If I try to be the hare I never make it even half way up the hill out of the village. The hills here are steep but the views from the top are breathtaking. I have learnt that the only way to get there to enjoy them is to be more tortoise. To jog or even to walk before I sprint.
And from time to time I know I have to seek a little rest and sometimes shelter along the way. To take refuge from the wind and rain or simply to take a breath and enjoy the surroundings.
So as a new week starts I will try to slow down in the knowledge that this will help me get to the top of the mountain, not hinder me.
Because if I don’t, I will fall off a cliff. Thursday showed me that the edges really aren’t all that far away.
Thank you to my husband, my boss, my team and my friends Lucy, Ali, Effie and Alex for listening and showing me it’s ok to say you’re not ok, that talking about it is a good thing, and that trying to be superhuman is stoopid.
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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
I listened at the door.
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.
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.
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.
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.
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.
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.
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.
Hello, welcome to On The Mother Hand.
My name is Katherine, I'm mum to two (one a medical mystery), and cheerleader for parent carers everywhere.
We live in Cornwall by the sea.
This blog about family life with disability in the mix.