Neither beginning nor ending be…and other lessons.

The conversation went something like this:

“2016. What a shitter hey. You know I’m really looking forward to the new year just to see the back of this one.”

“You can’t blame the year for all the shitty things that have happened.”

“No, no you can’t. But as humans we like to compartmentalise and sometimes it is healthy and natural to want to draw a line in the sand.” 

“I just got sick of hearing ‘it’s because it’s 2016’ when something bad happened. It’s stupid to blame the year and it devalues the actual thing that has happened.”

“I’ll just be relieved when this one’s over, that’s all.”

And so 2017 has begun and the world has heaved a collective sigh of relief. Hasn’t it? Haven’t you?

No?

The start of a new year often brings with it the anticipation and excitement of new beginnings and possibilities and the closure (satisfying or otherwise) of a chapter complete. Some sense of change or of progress. Of time being on our side again.

And yet this time feels different.

I see people all around me who have begun 2017 not with fresh-faced wide-eyed optimism or gung-ho determination but instead with a cautious hope and gentle stoicism.

Perhaps this is just what happens when you are nearing 40 and life experience has brought with it a few more knocks along with the years?

Perhaps it’s what happens when we see humans all around us causing destruction or making decisions we think are dangerous or stupid?

Perhaps it’s what happens when a generation of baby-boomers’ kids, for many of whom there was always something bigger or better each year as globalisation took off and economies, property and job markets boomed, have now grown up and realised that there isn’t so much, anymore? That those bigger, better life experiences, dreams, houses and things are harder and harder to reach for more and more people?

Perhaps we’re at a collective societal turning point, or perhaps I’m on my own here but for the first time ever I didn’t feel that new year sparkle. That fresh wave of excitement that anything is possible and that it’s going to be a good year, this 2017!

My year.

Your year.

Our year.

Because you can’t guarantee a good one any more that you can predict a bad one.

Nothing in life is certain, after all. Orange has taught me that. He has taught me that the unexpected can happen to anyone. He has also taught me that some of the very things I thought I would be most frightened of in life, I’m very capable of dealing with. That some of the things I thought were scary aren’t scary at all and that even in proper white knuckle, heart-pumping life and death moments I can still rely on myself to do the right thing at the right time.

Orange has taught me to never assume and to always have hope. To feel the fear and do it anyway (with the exception of roller coasters and zip wires, that is).

So why, as I sat on the sofa in a post-Christmas cheese fug could I not feel that fresh-start excitement, that ‘clean pages of a book waiting to be written’ feeling I’ve always felt at this time of year?

As I sat and pondered, my mind freed up by two weeks off work and a body surrendered to the sofa through sheer weight of Toblerone and Stilton alone, I realised what I was looking for was something else entirely.

On the wall next to me was a photograph. One of those enormous canvasses that was so fashionable circa 2010-2012. A black and white image of a family, our family, sitting among the wild grass and sand dunes above Gwithian Sands in west Cornwall.

Not a particularly flattering photograph of any of us, my inner critic would say. Two slightly flabby, tired parents wearing absolutely terrible rain coats (spot the Londoners who had to make emergency practical outdoor wear purchases on holiday), a grumpy, chilly toddler and a six month old squished tight into a baby carrier he’d much rather not have been in, thank you very much.

We’ve certainly had our more photogenic moments.

But there is a story behind this photograph that explains why it deserves its place on our wall and in this post.

It was 2011. It had been ‘our 2016’ before we knew what a 2016 was.

For us it was the year that we felt all the fear but hadn’t yet learned that we could do it anyway. In love with our newborn son but so deeply afraid of what was happening to him, or not happening, and why. To what it would mean for us, as a family, and our lives that we had built.

It was the year we knew we would run out of money if we carried on as we were, as Orange’s appointments meant work was an impossibility and, at that moment, for the first time ever we didn’t know how we could earn any more.

It was also the year that our home was broken into and tens of thousands of pounds worth of our belongings were stolen. My left hand, in the photo, without its sparkle. Sold, probably for drugs. Our home, still ours but somehow not.

Emotionally brittle from hospital appointments and tests that left us more fearful not less, bruised from the bully-boy interviewing of an insurance loss-adjuster who clearly thought we were frauds, and apprehensive of a house sale that would save us from bankruptcy, our lives as they had started at the beginning of 2011 were unrecognisable. Uncertain and with no real plan ahead.

And yet we had hope. Hope for the future, whatever it might bring. Hope, not in abundance but  in adversity.

At this moment, there was no clean slate. Just a multitude of unknowns. We didn’t know where we would live, how we would live, or even how many of us there might be in that future ahead.

But there was hope.

And when I look back at that photo now I know I could tell that younger, fearful and fragile version of me that we were right to have that hope. Without it, I wouldn’t be sitting here writing this now in our house by the sea in the place that we love.

So as the first week of the new year cranks up its gears, not a whole lot differently from the last, and the uncertainties ahead are personal, professional and global all at once, for a great many of us, all I can say is to hold on to that hope.

Even when you are flying by the seat of your pants or baby stepping one foot in front of the other to survive.

Even when self-belief and circumstance fail to show up on your side.

Here’s to a hopeful, healthful and fulfilling 2017.

With love,

K xx

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.

Home.

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.

“How many more times can I do this?”

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.

“How many more times can I do this?”

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.

Sleep. Perhaps.

Repeat.

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.

In a word, lazy.

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. 

 

 

 

 

The Money Pit: Making a Home Fit for an Orange

What makes a home?

Four walls and a roof over your head? A place that you love, where you feel safe and happy? Somewhere that you can make your own?

Filled with trinkets, dust and clutter or Kon Mari’d to the hilt, a garden with pinstripe lawns and bursting with flowers, or over flowing with children’s toys, are our homes not are an expression and extension of ourselves, who we are, and the people, experiences and things that are important to us?

If you’re a Five Year Planner, a Zombie Apocalypse Prepper, or a fan of lists and spreadsheets (like I am) you will understand how moving into a very old house desperately in need of a top to toe refurb (as we did) and not being able to do it, or even plan properly for how you might do it, (as we haven’t) is enough to make you want to run away, drink gin and live in a tent.

Four years since we moved in, really, I just want to put the whole house in Room 101 and hide under canvas on a cliff top. Right now our home unabashedly tells the story of us floating about in limbo, of hopes as yet unrealised and of best intentions to help from the council that failed.

Because as much as I’d like to start re-landscaping gardens, ripping out kitchens and replacing windows, we have had to hold fire on everything but refitting the makeshift loft extension because we have to adapt our house for Orange. So he can do simple everyday things like get in and out of the house, move around the house in his wheelchair, sleep, eat, bathe and dress.

Our first attempt at adaptations didn’t go so well. You might say.

Expensive. Tearful. And full of F words and C words I don’t wish to repeat.

For the last two and a half years, our garden has been impersonating an industrial wasteland (we are sorry, beautiful Downderry), with lifts that don’t work how they should, concrete paths that shouldn’t have been laid and a striking 1,000 litre plastic oil tank as a stand out feature piece, sitting taped and cracked, proud and high like a mocking memorial to the whole sorry, and expensive, process.

“Beautiful sea view you got but, you know, I just adore that tank!”

We didn’t want lifts in the garden just for kicks. For the Waitrose man to bring the shopping up in or for snails to find comfy homes. After falling down the steps carrying Orange, we needed adaptations and we needed help from the disability adaptations experts at the council to get them right and help us fund them via the national Disabled Facilities Grants scheme.

A system supposedly set up to help people just like us.

And yet the system failed us when we were at our most confused and afraid, with a little boy who couldn’t walk but no-one could tell us why or whether any of the gruelling physio and therapies we were instructed to do every day would actually ever help.

An ill-conceived job, put into the hands of people who were quite happy to take the council’s Disabled Facilities Grant money and disappear off on holiday to Goa, leaving ancient and decrepit workmen who should have long retired to complete a job they were unfit and unskilled to do.

I am relieved and happy to say that the adaptations team at Cornwall Council have made a lot of changes to how they do things since our experience. There are some dedicated, kind and thoughtful people in their team who have listened and who really do want to make things better.

But that doesn’t change the fact that the cost to fix this mess and to build a safe and functional way in and out of the house for Orange is eye watering.

And like a string bean, the boy just keeps growing. It’s not just the outside that needs adaptations, but the inside of our house now too.

I have walked miles around my own home over the last couple of years, trying to visualise where a through-floor lift might go, how we might fit in an adapted bathroom for Orange, where ceiling track hoists might go…

Do we need to widen doors? Move the stairs?

Change bathrooms into bedrooms and bedrooms into bathrooms?

What is that pipe? Where does it go?

Do we need to lift the flagstone floors?

How much will it cost? Can we afford it?

Help.

And so four years in, we are campers in a home we haven’t yet really made our own. With the exception of the living room which has been adorned with the permanent marker of a small girl who thought the ambiance would be much improved by a giant black lighthouse on the wall, we can’t do anything much at all until all the adaptations are designed, built and paid for.

All tent jokes aside, we have considered moving. We really, really have.

But it doesn’t solve the problem that whatever house we live in, we will have to adapt for Orange. And there really are no step-free bungalows on a flat piece of land, with wide doorways, hoists, adapted baths and enough space for a growing family anywhere within a sensible commuting distance of the children’s schools and work.

There just aren’t.

In truth, at £30,000, the DFG is a dinky pebble in the ocean when the cost of a lift alone can be £20,000. Even with a DFG for the outside, and a DFG for the inside, we will need to find money in the tens of thousands to get the jobs done and have a house that is functional, habitable and doesn’t look like a hospital. Or an industrial wasteland.

It’s just the way it is.

And so with blind faith we are leaping into the chasm of asking the bank for large amounts of money and hoping that eventually we can one day pay it back.

Because what is the choice? Really there is none.

When people are surprised that I have fought to maintain my career, that I work a full time job while being a parent carer, this is why.

It is one of the reasons why I don’t take kindly to criticism of me being a full time working mother, from those who think I should be a ‘rock’ at home for my children, or that I have ‘made a lifestyle choice to work’ (yes, there are still people who think this way).

It is why I will continue to campaign for the rights of working parent carers to hold on to their jobs when people and systems around us tell us that we shouldn’t or that we can’t.

Because disability is expensive. And the more disabled you are, the more expensive it is.

And so until I can galvanise to campaign for Disabled Facilities Grants to cover the actual cost of adaptations (because right now, they don’t touch the sides), we, and many other families alongside us up and down the country, step, headlong, into the Money Pit.

Wish us luck.

 

Promises to a friend

Words. Words have the power to build us up and to tear us down. They bring joy and laughter, sometimes sadness, sometimes hope. They can unite us, divide us, inspire us and ignite us. They can connect us and help us to understand our world, this weird, wonderful, bewildering and cruel world.

It’s one of the reasons I started this blog. There were words in my head that needed to come out. I hadn’t known what to do with them. They flew this way and that looking for a home and never quite finding a resting place. Finding a connection in the words of others encouraged me to start writing it all down. And the connections grew, blossoming behind the screen into friendships.

Over time I imagined this would become an uplifting, hopeful place, full of laughter, encouragement and joy as we traced our path through raising Orange, giving other families hope too, perhaps, that this will be ok. You are not alone. There is always hope.

But it can be all too easy to paint a picture. To gloss over the hard bits for fear of bringing people down or perpetuating the myth that life with a disabled child is nothing but tragic and awful.

Which it isn’t.

There is joy, there is hope, there is laughter, there is love. But there is also pain, there is also fear, there is also sadness and there is also loss. Because that, right there, is life.

Pretending everything is marvellous all of the time would be, of course, ridiculous. But more than that it can lead us to feel that we should always be thankful and joyous and full of gratitude and aren’t we lucky all of the time.

That the answer to ‘how are you?’ should always be ‘good, thanks‘. That we should quickly move on from difficult emotions well before we are ready.

While a little bit of gloss can be uplifting, go too heavy and it quickly becomes isolating. Silencing.

Sometimes when people are in the greatest of need.

Because words are at their most powerful precisely when the chips are so far down the cliff you wonder if they haven’t actually drowned. It is in these moments, when simple words on a page, told truthfully, letter by letter, can keep your head above water, even when your heart is in the sole of your boots.

For much the same reasons as my friend Alison, I haven’t written anything since June. In her beautiful and honest writing about friendship after loss, she has captured tenderly why neither she, nor I, have written over the summer. Our heads and hearts were full of someone else’s story, that wasn’t ours to tell.

But also, I really didn’t know what to write. Because I panicked and wanted to gloss. To paint over the pain, the fear and the loss facing dear friends to make it go away. That if I just imagined hard enough that it would be ok, if I hoped high enough, that a miracle would happen, that magically life would somehow return to normal and they wouldn’t be saying goodbye to their little boy.

I couldn’t do that.

But I can do this.

I can promise to listen.

I cannot know the depth of your grief but I can see you through your tears. I am here. I will ask you how you are, don’t hold back, dear friend. I am here.

I can promise to be patient.

Grief is the proof that you loved well, dear friend. Time has no place here in judgement. While you grieve, I grieve with you.

I can promise to lift you up when you are ready.

I cannot know what the future will be, dear friend, for you nor I. I cannot try to fix the unfixable. I do not have the answers. There is no handbook. But I can be here beside you and I promise to be present. I have no expectations of what your grief should bring. If you need to vent, I am here, if you need to cry, I am here, if you need to laugh, I am here too.

And when you are ready, dear friend, I will be here with words of hope and encouragement. I may not always get them right but I promise to try.

Most of all, I can promise not to gloss.

So, dear friend, I will not try to distract you from your grief nor hurry along your tears. While I am far away in distance I am with you in this. I will not shy away because I cannot find the words.

“Remember, that grief never asks you to let go of love”                         Ashley Davis Prend

You can vote for my brilliant friend and her honest, raw, funny and totally gloss free blog Are You Kiddingney in this year’s Mumsnet Blogging Awards.

 

A very public (in)convenience

This post first appeared as a guest post on the Cardew Physio & Performance blog as part of a series of blog posts promoting awareness of continence issues during National Continence Week.

I don’t know about you, but one of the reasons I’m not at Glastonbury this weekend with all the other mud-coated revellers is because I can’t quite get my head around the festival loo situation. Queuing up in the rain to use a long drop with no toilet paper is enough to put me right off going to Glastonbury, even with the most star-studded of line ups or luxury boutique camping on offer.

But can you imagine if there were no toilets at Glastonbury at all? Or if there were toilets that were only accessible to people over the height of 6ft 5? Or that would collapse if anyone over 10 stone entered the cubicle? There would be uproar among the hundreds of thousands of Glasto fans.

Or, quite simply, people wouldn’t go.

We have become used to toilet facilities being available to us pretty much wherever we go in the UK. Public toilets began being introduced in London in 1851 and since then have become a familiar feature of cities, towns, villages, attractions, public buildings and restaurants across the country.

It would be unthinkable to go for a day out in a public place or to a major event and there not be a toilet available, right? Wouldn’t it?

Unfortunately for some of the most vulnerable people in our society this is not the case. Until the advent of the Changing Places campaign in 2006 there were no toilets available in the whole of the UK for the ¼ million people who cannot use standard or typical accessible/disabled toilets.

According to Changing Places, this includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, severe physical disabilities as well as some older people. A quarter of a million people.

This quarter of a million includes my son, Lawrence, who is five years old and wears a pad because his disabilities mean he does not have adequate control over his own toileting, or the ability to transfer to a toilet, even a ‘disabled’ one. He needs to be changed by a carer, regularly, throughout the day.

When he was tiny, we used the baby changing facilities like every other parent. Luckily, these have been installed in most public places and restaurants across the country because managers have recognised that families with young children are an important and valuable part of their customer base who have money to spend.

Unfortunately the same is not yet true for severely disabled people. A quarter of a million people. And their families.

In the vast majority of public places in the UK, the place where severely disabled people get changed by their carer is the toilet floor of the disabled loo. The filthy, often urine-soaked and dirty, toilet floor. A place that most people would only want the soles of their shoes to touch.

This is the now the reality we face with our little boy. The same reality faced by vulnerable, severely disabled people and their carers across the country. It is not safe. It is not dignified. It is not kind. It is often the reason why severely disabled people and their families are limited to local short trips out only, or why they very rarely leave the house at all. For many carers, lifting a disabled teenager or adult from a wheelchair onto the floor of a toilet and back again would quite simply be impossible, never mind the filth.

What people like our little boy need is a toilet that can be used in safety and comfort for both him and for us as his carers, which has more space than a conventional disabled loo and the right equipment – including an adult sized height adjustable changing bench and a hoist.

Changing Places have made great progress on campaigning for suitable toilet facilities for severely disabled people over the last 10 years, but there are still less than 1,000 across the whole of the UK. In Cornwall, where we live, there are only 10 Changing Places toilets in the whole of the county.

I am delighted to say that this will soon become 11, as a result of a local parent the new (and fabulous) Cornwall Services on the A30 has understood the need for these facilities and is fitting one as I type.

I am, though, sorely disappointed to see that in all the £17.6 million revamp of the Hall for Cornwall, there are currently no plans to install a Changing Places toilet, despite vocal campaigning from parent carer and disability groups.

John Lewis (a favourite retailer of mine until last week) responded to Changing Places a few days ago to say that they ‘didn’t have space’ to fit a Changing Places toilet in one of their flagship stores that has over 70,000 square footage of retail space. Imagine if they said they ‘didn’t have space’ to fit regular toilets, or if they said they didn’t have space for a café, or a shoe department? Unthinkable.

Already, even with Lawrence being quite small, we are finding ourselves planning family days out and long journeys around where there is a Changing Places toilet. We love the Eden Project, because they have a fabulous Changing Places loo, as do the Life Centre and Drakes Circus shopping centre in Plymouth. But beyond that, it’s pretty sparse. What will we do when we can no longer lift him ourselves and when we get sick of carrying around a mat soaked in urine from the toilet floor?

We will be isolated.

You see, it’s not just the person with disabilities who suffers when there is no toilet they can use. The lack of Changing Places facilities isolates entire families too. Families who have money to spend at your restaurant, shop, theme park, hotel or festival, just like everybody else.

So please, if you are a restaurant owner, a hotel, shopping centre or theme park manager, or a local authority public convenience planning officer (do they even exist?) then please, please fit a Changing Places toilet. Not only will you see the investment repay itself with new loyal customers but you will be changing lives.

Oh, and by the way? If you’re heading to Glastonbury this weekend and one of your party is severely disabled, you’ll be thrilled to hear that the festival has a Changing Places toilet in the Spring Ground Accessible Campsite. For everyone else, if you’re not keen on the long drops, you might want to check out the compost loos… Good luck 😉