In the shadow of Storm Brian

“You on your own then?” (I hasten to add this isn’t a #metoo story; this was a genuine expression of surprise/concern).

“Well my husband will be here soon [before it bloody rains, selfish ****]. He’s cycling from Scotland.”

“Ah (eyeing the back end of a five year old that has already spotted a rabbit and is disappearing across the caravan park at the speed of light). He knows which side his bread’s buttered.”

“Well there wasn’t really room in the car for him anyway, what with all the medical equipment, and, erm, children. And wine.”

“Aye. I can see who wears the trousers in your house.”

And with that, the master of metaphor sauntered off to show me the only island of grass that was suitable for tents (i.e., not under water) in this ridiculously late part of the season. Is the end of October even in ‘the season’?

Once I had unloaded the boot, laid the tent out, and fed the girls an entire week’s ration of Quavers in a vain attempt to stop them walking goose shit into the car, said husband did arrive.

“How was your journey?” I asked. “Bit of a head wind. I can recommend the cake at the Chain Bridge Honey Farm.” Cake? You stopped for cake and left me here with three kids singing ‘the baby’s done a poo, the baby’s done a poo’ (thanks Nick Cope, we do all love you really) and a pile of goose shit, waiting for Storm Brian (a fitting name for Britain’s answer to Hurricane Ophelia) to piss all over us? AND you expect a space in the car on the way home??

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Nice weather for ducks

Miraculously, we got the tent up before the night’s deluge hit. Miraculously we cooked up pasta and reheated Bolognese sauce without setting fire to the tent, and fed it to the children without spilling too much onto the pristine (ha! Of course we didn’t clean the tent before putting it away last time – it took us a fortnight just to get it dry) groundsheet.

After tea we got Benjamin ensconced in his mound of pillows and snuggled in his sleeping bag with a few blankets thrown in for good measure (think ‘The Princess and the Pea’ but with an inco-pad and a bobble hat on) and then the two still very excited girls snuggled into their sleeping bags. One of the advantages of camping at this time of year is it’s at least dark when you put the children to bed so there’s more of a chance of them sleeping. On the other hand, if one of them decides to play boobie-tennis and sing Old MacDonald all night long it can seem like a VERY long night. Time to grab a quick shower before the party…

_20171102_223107.JPGYou know you’re in for a treat when the campsite bathroom comes fully equipped with a mop and a bucket of stinking water… Actually the showers were wonderfully hot and remarkably clean and despite the lack of any form of screen or curtain only a small river escaped into the rest of the room. Which I managed to drop my pants in. Every. Single. Time.

“How did you get on last night?” asked the site manager (somewhat smugly, I thought). “We all stayed dry!” I said, thinking this was quite an achievement given the torrential downpour that had lasted all night (and omitting to mention my pants). And certainly an improvement on our first night here last year… “Forecast has changed,” he smirked, “Storm Brian’s been delayed until today.”

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Storm Brian has been delayed…

I hurriedly put the kettle on for what might be our last cuppa before the Great Flood. Then followed the usual debate: “How can a kettle take this long to boil?” “We can’t be running out of gas already?” Gives gas canister a shake. “How do you tell if a gas canister is getting empty?” “Weigh it.” “We haven’t got any scales.” “Maybe it’s just too windy.” “Maybe you filled the kettle too full.” Kettle eventually boils and we are none the wiser as to why it takes so long to do so when camping, but the gas canister never appears to quite run out.

Children washed and tea drunk, we embarked on our ‘holiday activities’. As the days passed and the mud deepened, the site owner strove to prevent anyone getting their vehicles stuck, by parking increasing numbers of caravans over the roughest parts. I understand the intention, but the result was that we had to drive – slowly enough not to hit any of the protruding parts of said caravans, yet fast enough not to get stuck in the mud – in an increasingly complex set of manoeuvres like something out of the computer game Worm, where you end up going round in ever tighter circles until you run into your own tail.

But with a bit of perseverance, a bit of swearing, and some very muddy feet we managed to get out and about. Our first place of shelter was Barter Books. After we’d mistakenly followed Google into an industrial estate and turned around in Aldi then again in a carpet warehouse, we finally found our way into this warren of a secondhand bookshop in the impressive old station building at Alnick. We had a fantastic lunch in the ‘station buffet’ (I don’t know many station buffets that do thrice-cooked chips) and then the girls and Daddy went book shopping while Benjy and I sat by the fire . Caitlin was enthralled by the model railway running around at ceiling height, playing peekaboo between the bookshelves. And my husband bought himself a tea towel, so everyone was happy.

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Budding train drivers in Barter Books

On Day Three we discovered the delights of driving to a beautiful beach and sitting in a nice warm car with the radio on drinking coffee and eating brownies / licking an enormous lurid green ice cream with a flake in it (natch), according to taste, with big thanks to Benjy and Caitlin for falling asleep on the way and giving us an excuse for such behaviour. Eventually we braved the beach, and the winds, and despite Jackie’s initial uncertainty that her ears would stay attached to her head, we were rewarded with a simply breathtaking view and plenty of mud to play in.

Back in the shelter of the campsite we had half an hour or so before tea to indulge the girls in stalking some wildlife, and to indulge ourselves in the cuteness that is a toddler starting to speak in sentences. “Wabbits!” “Wheredawabbits?” “Wabbitshere!” “Wabbits!” “WabbitsHERE!” “Mama, WABBITSHERE!” … “Wabbitsgone…” sniff… “Wabbitsawgone”. Teatime girls. “No. NO. WudgafudgaWABBITS.”

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Stalking wabbits

On Day Four we were joined by an old friend and his daughter. Having as usual forgotten how ridiculously busy England can be on a sunny (if very breezy with a threat of rain later) weekend in the school holidays, we cheerfully set off for the picturesque village of Low-Newton-by-the-Sea. Selected by my husband on the grounds of its ‘wheelchair accessible nature trails,’ it was only when we passed a sign advertising The Ship Inn and Brewery that I realised the true reason we were visiting. Nonetheless it was a very picturesque village with a very picturesque pub serving very lovely food including some thoughtful children’s options. I slightly marred the picturesqueness for everyone else by changing Benjamin’s nappy on the village green, but you can hardly expect a cramped mediaeval pub at the end of a dead-end road on the Northumberland coast to have a Changing Place…

We did manage a stroll through the nature reserve, my husband and our friend taking the girls further along a rather less-than-accessible path to the beach whilst Benjy and I sheltered in a hide and did his physio. The hide was decorated with statistics of bird sightings and identification charts for everything from a wren to a golden eagle, but we managed a sum total of a solitary black-headed gull (everything else presumably still sheltering from Storm Brian).

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Really not into birdwatching

Storm Brian having finally passed, although I’m not sure exactly which portion of the wind and rain could be attributed to him, and left colder air in its wake, our final night in the tent was spent frantically trying to keep warm, and frantically checking that the sleeping children were warm enough, without cooling them down by opening their sleeping bags (not a problem for the girls because they always manage to kick their sleeping bags off anyway, much as they do our duvet when sharing our bed back home).

We gave up on our usual sophisticated evening routine of sitting in the dark drinking wine out of plastic mugs and eating salt and vinegar crisps, because the groundsheet was just too cold to sit on, and retired to our sleeping bags. Five minutes after my husband had fallen asleep next to his whisky, Caitlin awoke demanding milk. It was impossible to fit both her and me into my sleeping bag, so we spent the night squirming underneath it, with either my bottom or hers sticking out into the cold night air depending on which breast she was attached to. Suffice it to say, if that had been the first night and not the last, there would have been no nights two, three or four. But at least it justified the number of blankets and woolly hats I had packed.

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After a breakfast of instant noodles and leftover cake, our wonderful friend took the girls on an ‘adventure’ (i.e., another wabbit-hunt) to enable us to pack up (i.e., argue) in relative peace. If anyone has invented a method to remove all the contents from a tent, pack the tent up, and stow the tent in the bottom of the car boot underneath all the other contents, in the rain, without everything getting soaking wet in the process, please let me know. However, thanks to the fact that we are now experienced campers (having been twice this year), said watering of all our equipment was achieved in double-quick time and we even found room – and the good grace – to fit my husband in the car on the way home. As Bugs Bunny himself would say, “That’s all folks.” Until next year.

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When you love church but your child hates it

The Christian Church is far from perfect.

I, and my family, are so lucky to have found in St Anne’s a small branch that is growing, thriving, outward-focused, community-centred, accepting, caring and inclusive. We are fortunate that Benjamin, although ‘complex,’ is not ‘challenging.’ Yet I am confident that, even if he were noisy, disruptive, violent, or anxious, our church community would do everything in their power to welcome us; that they would see this as a shared problem to solve, not a personal problem to ignore.

This isn’t always the case. It’s not easy being a SEND parent, and the Church can be a great support – but it can also be a challenge or even a hindrance. I’ve been asked this week to share an anonymous post written by a fellow SEND parent and a fellow Christian (if I am honest, a more committed Christian than I, who lives and breathes the Spirit in her life and in her writing). I am both saddened and excited to share this post.

Saddened that not everyone is treated they way we have been – with gentleness and compassion.

Excited that through sharing these words I may be able to help encourage and promote change in the church and elsewhere. Every group – perhaps especially every church – can always do more to avoid becoming complacent, cliquey, and to foster inclusion for all members, especially those who no longer show their face or raise their voice.

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“My faith means everything to me. Church has always been a huge part of my life but now I wonder if I should continue going.

I went faithfully every week before I had children. When my daughter was born I continued to take her from the first Sunday she was born. She remained with me in the service until she was toddling and then she attended the crèche where I took turns helping out.

Everything was going well until it came time for her to leave crèche and start going to Sunday school instead. I went with her for the first few weeks but she really wasn’t enjoying it and I reasoned with myself she was perhaps still too young or just struggling with the change.

I spoke to the person who was running the crèche and they agreed my daughter could stay in crèche a few months longer. We tried again but she still hated Sunday school so I would bring toys with me and keep her in the service with me. In the beginning it wasn’t too bad. She would look at books, play with her happyland figures or sit on my knee for a cuddle.

Then she started getting bored and disturbing the service so I would stay in for the worship and slip out to the foyer with her and her brother for the rest of the service. If I am deeply honest I hated it. I hated the fact I was no longer included or could listen to the sermon. I was upset my children did not like Sunday school and that all of a sudden I seemed invisible.

I have had church in the foyer for six years now. My daughter is now 9 and still hates Sunday school. But something has changed: not only does she hate Sunday school she now hates church completely.

At 5 she was diagnosed with autism. I used to be able to stay in the service for the worship but now that stresses my daughter so much she screams. The music is so loud, the church is so busy and the lights are so bright. I rarely manage through the first song before I find myself back out in the foyer with my children because my daughter is crying and screaming.

I loved church for years but now my daughter hates it and I am heartbroken.

My eyes have been open to things I never noticed before. It seems churches want children who will take part in nativity plays, sing choruses with actions at Easter and fully engage in summer holiday clubs. They want children who can fit in with the programme, who require no additional support and who respect the volunteers. They want the children who run enthusiastically into the hall when it is time to go and bring out lovely crafts to show their parents when the sermon is finished.

What about the children having church in the foyer like mine? Children who find church difficult, who find social situations a huge challenge, who get overwhelmed by noise and crowds and change.

The very mention of going to church now makes my daughter anxious. She recently told me she doesn’t feel welcome there at all.

That broke my heart.

No amount of toys or technology or books can convince my daughter to come to church with me any more. Bribery has lost its appeal now and I fear I am damaging her spirit by forcing her to come against her will.

Yet my faith means everything to me still and I want to be in church.

I am broken hearted that church is not the place of love and acceptance to my child with autism that it should be.

Until that changes I have to put her first. So from now on I won’t be at the place I love on a Sunday anymore.

My daughter will be happy. I am heartbroken.”

Festival spirit

Yesterday, I took the two little ones to a festival – Daytripper – on my own. It’s not the sort of thing I would normally do. I’m not great at mixing with people I don’t know, or don’t know well. It’s in a crowd that I feel loneliest and most conspicuous. And with an energetic toddler and Benjamin, with his tube and his bile-bag and his suction pump I was sure going to be conspicuous. And without my chatty biggest girl and my husband I was sure going to be lonely.

Ric and Jackie were away camping (with his best mate and her best mate and our car and a bottle of whisky), and this festival only comes around once a year, and it is only two minutes from our house. So my options were to sit around the house listening to it from outside, or go and join in the fun: try not to worry about the routine of medications and feeds and physio and do something ‘normal’ families do.

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The children were both totally up for it

Maybe I’m over-egging it a bit: it wasn’t exactly Glastonbury – it wasn’t even an overnight thing. It was a few bands I have to admit I hadn’t heard of, in a small park with only one entrance for Caitlin to escape out of. The sun was even shining and the loos were cleanish (even if I couldn’t get the buggy through the door). And, as I said, it was literally two minutes’ walk from our house.

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Mummy, why is the sky that funny blue colour?

I did find it a bit difficult to mix at first – but mostly because I had to keep breaking off from conversations to chase Caitlin, or to move Benjamin into or out of the sun as I fretted whether he was getting too hot or too cold. But Caitlin made friends with a little boy through the medium of bubbles, so I braved the bar for another sort of bubbles…

…and as the sun went down and the pyrotechnics (really!) came on, we all drew closer to the stage and I found myself drawn into a friendly crowd of local mums, dads and neighbours. The music was great, the pizza was yummy (if a little grass-covered after Caitlin had finished with it), Benjamin enjoyed the lights and the music, and Caitlin stayed within sight most of the time, primarily because she didn’t want to move too far from the donut stall. We stayed out almost to the end – well past the children’s bedtime if not mine – and listened to the last couple of songs on the way home. I even managed to get both children to sleep after all that excitement – in time to reward myself with a shower and another (small) glass of wine.

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Grass-cuttings with your pizza, anyone?

So were we conspicuous? Well, maybe – but certainly no more so than the 87-year-old who was dancing with anyone and everyone and enjoying every minute of it. Yes, it was tricky managing tube-feeds and nappies without getting everything contaminated with crazy-string, but no-one else seemed to bat an eyelid. Yes, a little girl came up and asked questions about Benjy (much to her mum’s consternation) but not in a fearful or critical kind of a way, just out of innocent interest. Yes, Caitlin did repeatedly make off someone else’s football but, well, I just pretended she wasn’t anything to do with me!

And was I lonely? Well, of course it felt strange being there without my husband to hold, and without my biggest girl to indulge (we brought an Elsa balloon home for her) but really I was reminded how warm and welcoming this small town can be, if I only stop looking for problems and let it.

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Feeling the love

At the same time as I was dancing the afternoon away with my children, another SWAN family elsewhere in the country were visiting their music-loving little boy’s grave, leaving sunflowers in memory of his bright spirit, which passed just over a year ago. I honestly cannot imagine what that must feel like. To visit your own child’s grave. However hard it is – however hard – to care for Benjamin, to get out and about with Benjamin, to fight for what he needs and to do things that ‘normal’ families take for granted; it cannot ever be as hard as that.

So however conspicuous, lonely, difficult and downright different our life is, we need to make sure we keep on living every minute of it to the full. I will dance until I’m 87 if I can keep my loved ones dancing with me. I certainly intend to be dancing at Daytripper 2018.

‘Nanny Grinstead,’ with love

When I was five, my grandmother took me – just me, not my mum and dad, not my noisy, bitey little brother, just me – on a holiday to Folkestone. I don’t remember very much about it: I know we stayed overnight in a hotel, which was a massive treat – mum and dad never, ever, took us to hotels. I know we went on the Romney, Hythe and Dymchurch steam railway, because I remember seeing a postcard we brought back. I remember there was shortbread in little packets in the hotel room. But mostly I remember the feelings that weekend generated. I had never felt so special. For 48 hours Nanny made me the centre of her world. I had never felt so special.

I guess that’s what all grandparents do. But to me, ‘Nanny Grinstead’ (named for the town where she lived, to distinguish her from my paternal grandmother, ‘Granny Poole’) seemed to make me feel extra-special. I was her first grandchild and her only granddaughter. I gave her her first great-grandchildren and her only (to date) great-granddaughters. Although once I left home and moved north I rarely saw her, I felt a bond stretching across the miles and the generations, and I know she felt it too.

If I inherited most of my looks, my impatience and my perfectionism from my paternal grandparents (I wish I was less of a perfectionist. I wish, like Nanny Grinstead, my favourite phrase was ‘That’ll do’), I like to think I got at least some of my better characters from Nanny. Above all, I hope that like her I am always generous with my money, belongings and time.

Born in 1922, Nanny (whose real name was Marjorie), passed away earlier this week, just a few days after her 95th birthday, the last of my children’s great-grandparents to do so. Nanny lived all of her life in East Grinstead, and knew everyone there. You couldn’t go ‘up the town’ with her without stopping to greet half a dozen people. She didn’t gossip, she just loved a chat and to look out for her friends. At Christmas, I have never seen anyone with so many cards as her. They would cover every sideboard and surface, cascading down the walls like waterfalls.

She was widowed when I was eighteen months old and lived alone in a neat little bungalow. I remember always being fascinated by the under-floor heating, which would rise up from slatted vents in the carpet like steam from a New York fire hydrant. There was a macramé hanging basket in the porch and always antimacassars embroidered with ducks on the armchairs. Not to mention the fact that she had two loo roll holders side by side in the WC. 

I imagine it would be pretty frustrating to have your neat and tidy domain invaded every so often by a pair of marauding grandchildren but, if it were, she never let on. She tolerated us rushing in, pulling all the games out of the toy cupboard, bouncing up and down on the giant teddy she once won in a raffle (she was the luckiest person I ever met – I never knew her to enter a raffle and not win), and rearranging every single one of her precious collection of wooden elephants. The only place we somehow knew we shouldn’t disrupt was her bedroom, although I would often sneak in to gaze at her sitting at the dressing table with her back to me, brushing her hair, or to look at myself in her full-length mirror, something we didn’t have at home – if I wanted to see my bottom half I had to stand on my parents’ bed, then jump off again to see my top half.

Nanny was definitely no pushover – if I needed a telling-off, I would get a telling-off. Hard-of-hearing for as long as I can remember, if you spoke too quietly, or merely said something she didn’t understand or didn’t agree with, you’d receive a brusque ‘Eh?’ But a decade of dependency in a care home weakened her mind, body and spirit. By the end, she was pathetically grateful for my pathetic attempts at communication from a distance. By the end, her hair was thinning and her skin almost translucent, so fine it felt like silk. By the end she had few belongings, although more than you would expect could fit into that one small room at the care home, little dignity, and very few peers left. She outlived her younger sister and most of her friends. There were occasional glimpses of her feisty nature and sparkling eyes, but truly she had had enough. Thank goodness for her eternal companion – Sky Sports.

Nanny had a pathological obsession with sport. Until her stroke, she would get up every Monday morning to go swimming in the local pool. I went with her once or twice – it was freezing! At school, she excelled in stool ball – a uniquely dangerous Sussex sport kind of like cricket played at head height. Football, tennis, snooker and especially cricket, you name it, she would watch it. She would take a cantankerous like or dislike to the players based on very little – during the nineties she could frequently be heard referring to the England cricket captain as ‘That Atherton.’ She also loved nothing better than a game – and I think having grandchildren was a pleasure to her for that reason. Cards, especially, were her favourite. She would get out her button box for betting and me, my brother, mum and her would play Newmarket while dad hid behind his newspaper and muttered about the ‘Devil’s picturebook.’

When I was in junior school, I interviewed Nanny about her time in the Land Army, for a project. She was full of tales of the camaraderie, full of jokes about having to bury the carrots in sand to stop the mice from eating them. It must have been tough for an educated middle class girl to knuckle down and work the land like that, in all weathers, but if it was, she didn’t say. And it didn’t put her off a bit of cultivation. The garden at her bungalow was always full of runner beans, raspberries, rhubarb and sweet peas – even if it was generally full of weeds as well. She focused on growing, not on tediously weeding, and who can blame her? In autumn she would take us blackberrying along the old railway line.

After that trip to Folkestone, I would regularly go and stay with Nanny Grinstead for a few days at a time. The part of the week I most looked forward to was her Thursday afternoon shift volunteering in the League of Friends café at the Queen Victoria hospital. I guess it was my first taste of work experience, my first taste of doing something useful, my first taste of interacting with people, and I loved it! I loved sneaking out from behind the counter to collect the dirty cups. I loved the big old urn and the checked tea-towels. I loved counting the stock – packets of Frazzles, Wagonwheels and Polo Mints – to see what we needed to re-order. I loved taking orders, taking the money, and giving people change. I realise now that I must have got under her feet all the time. I must have been slower than her at all those tasks. She must have had to recheck the stock-take when I wasn’t looking. But she never let on. She never told me to go and sit down and do some colouring. She always indulged my enthusiasm. She was the first person to let me go in a loft – my parents always assumed I would put my foot through the ceiling.

Many of my memories of Nanny revolve around food. Whenever I stayed she would make sure we went out for lunch at least once. Sometimes with her best friend, Auntie Joan, whose gruff Scottish husband would only eat sausages. Nanny would always get in a Kellogg’s ‘variety pack’ of cereal for my breakfast. She had a small kitchen with mugs hanging on hooks under the cupboards. Together we would bake sweet concoctions of sugar and desiccated coconut stuck on a base of melted chocolate. She would do things with condensed milk. She made an amazing pudding of ginger biscuits soaked in sherry, stuck together with whipped cream and the entire thing coated in melted dark chocolate. It looked like an enormous caterpillar and tasted like all the good bits of a trifle with none of the fruit. On one visit she brought out an old electric waffle-maker (my Grandad had been a great one for gadgets), and every visit after that we begged her to make batter for waffles again. When I went off to university she let me raid the boxes and boxes of old cooking equipment in her big double garage (She drove a succession of Minis – trading each one in when it was three years old so that she didn’t have to go through the stress of getting an MOT). All my saucepans, wooden spoons and fish-slices came from her. I must have been the only person who turned up to Fresher’s Week with two fish slices.

The last time I saw Nanny was in April. She was in a geriatric ward in Redhill from which she was not expected to return. Yet, once again her tough-as-boots old body pulled her back from the place where perhaps her mind already wanted to go, had wanted to go for some time. I am so glad I made the trip: I took Caitlin (who tottered around the ward, almost tripping up gentlemen in dressing-gowns and Zimmer-frames, delighting the old ladies, and causing the staff to ask if I could possibly bring her in every week to cheer everyone up). She will now be able to know, if not to remember, that she did meet her great-grandmother. I think maintaining that link between the generations is important. And I am glad, now, that Nanny is finally able to rest with peace and dignity. No longer reliant upon others for her most basic of needs. No longer in pain and not able to understand why. No longer alone in a sea of faces. And I am glad that she got to spend her final days in the caring environment of the ‘home’ that had been her home for so long, with staff who truly did care for her and were as much family to her as I was, with a decent palliative care package that meant she didn’t have to move to an unfamiliar, clinical hospital ward. Nanny’s death is the end of a generation for my family, the end of an era, the end of something special, but the special qualities she embodied live on in her daughters, granddaughter and great-granddaughters. May she rest in peace.

Therapy for two

To be honest, I’m terrible at making time to do therapy with Benjamin. A quick stretch while I’m changing his nappy. A couple of rolls when we’re getting dressed in the morning. Plonk him in his chair facing in a slightly different direction each day, give him some toys to look at and that’s about it.

To be honest, by the time I’ve done all the treatments that keep him alive – the inhalers and the nebulisers and the chest physio and n-p suctioning; by the time I’ve given him his medication six times a day and made up his feeds and checked his stoma and washed and dried all the syringes; by the time I’ve done the day-to-day essentials – washed him and dressed him, brushed his hair, changed his nappies, set up his sleep system, carried him from room to room, there doesn’t seem to be much time left for ‘therapies:’ the things that won’t keep him alive but will help him develop. The things that will stretch him, mentally and physically. They drop to the bottom of the list, somewhere between making sure everyone gets fed and catching up on the endless piles of paperwork that come with having a child with complex needs.

To be honest, putting him into shoes or splints or getting him onto a gym ball is quite hard work – he’s not getting any lighter or any more flexible. Getting him into his standing frame is really hard work. Sometimes even keeping him awake or finding a toy that grabs his attention is really, really hard. I’m scared of hurting his stoma, fearful of pulling out his feeding tube. I’m worried I might drop him!

And I don’t want to push him – we’ve spent too much time in and out of hospital to want to push him. Too much time wondering if his seizures could be caused by overstimulation. Too much time fearing that rolling around on the floor during physio would make his reflux worse and therefore make his chest worse. Two days a week he goes to nursery, which is brilliant but exhausting for him: there’s no way he’d manage any exercises on top of that. There’s usually at least one other day in the week he’ll have some kind of therapy anyway – a physio visit, or a session with the visiting teacher, and after 45 minutes’ intense interaction with them he’s shattered. Maybe he’ll be a bit off colour one day; another day he’ll have had a bad night and just need to sleep. And then it’s the weekend – surely he deserves a break on the weekend? Or is that just me?

Because Benjamin is classed as ‘life-limited,’ I justify it by the reasoning Saira Shah, author of the Mouseproof Kitchen, calls upon when speaking about her daughter, Ailsa, before she passed away at the age of eight. “What’s the point of giving her therapy which would give her 20 per cent more muscle tone when she’s 50? This is what she loves … being held, being rocked, being dangled upside down. I don’t see why she can’t have a life where she is just cuddled.” But for us this has degenerated into a life where he just sits and watches me work.

Our physiotherapist is wonderfully understanding. ‘Don’t see it as a therapy programme,’ she says, ‘you have enough on your plate. Just do it when you’re sitting with him anyway.’ But when am I ever ‘just sitting’ with him? When do I ever sit, alone or with my children? When do I stop rushing around and connect with any of them?

And then, then there are the girls. They are both part of the problem and part of the solution. It is so hard to find time to focus upon Benjamin, who just sits there passively, dozing, when there are two caterwauling bundles of energy, one stout and curly, one lithe and blonde, pulling you in opposite directions with opposite vociferous demands.

But, no thanks to my lax approach (and partly thanks to our sessions at the Bobath Centre), he’s getting good. He really is. He can look to both sides now – and hold it. He can sit straight and tall with only a minimum of support at his lower back. He can bring his head up with you from lying. He can hold his head up when you lean him sideways. I hadn’t really noticed until I was watching his physiotherapist working with him one day. It’s much easier to see when you’re watching from a distance. And suddenly I thought, hang on, I want some of that.

It was like a switch flipped in my head. Doing Benjy’s therapy isn’t a chore, to be got through as quickly as possible, to be ticked off the list. Benjy’s therapy isn’t in conflict with enjoying him – it’s time to enjoy him, to let him show me what he can do. It’s precious time to spend with him, revelling in his achievements, building a better connection. Just as I spend time with Jackie reading stories before bed, or building Lego. Just as I spend time breastfeeding Caitlin and pushing her on the swings.

I guess I’m starting to appreciate this a bit more now he’s getting older and I’m not necessarily with him 24/7. With his carers, nursery, respite, and time at Rachel House (not to mention time in hospital), we’re slowly dividing his care up between more and more people, which means less and less Benjy-time for me. I need to start claiming some of that time back in ways we will both enjoy and benefit from.

And could it even help me to slow down a bit? Instead of rushing around the house could taking half an hour to ‘just sit’ with Benjy also be a half hour for me to breathe, relax and regroup?

And could it actually be of benefit to his sisters too? Instead of leaving them in front of some uncensored crap on YouTubeCbeebies could we at least and watch Cbeebies together, in the same room, and talk about what we’re watching, while Benjy’s practising his moves? I could learn a lot from Benjy’s little sister, bouncing up and down on her tiptoes in front of his chair going ‘Jenjy – uh – uh – uh – Jenjy’ and demanding to have him lowered down to her height to play. Because that’s all his therapy is, really, play. It’s not arduous, it’s not unpleasant. It’s a bit of stretching out, a bit of rolling on a gym ball, a bit of singing nursery rhymes and doing the actions, a bit of looking at things he likes to look at. What am I making such a meal about? Why am I putting it off? Therapy isn’t in conflict with the cuddles, it’s a way to cuddle him more. We could all do with a few more cuddles in our lives – and Benjy-cuddles are the very best.

The last thing I want is respite

My family are the best. Not the best behaved. Not the cleanest and tidiest. Not the most talented. Not even the best at getting on together. But all different and complementary, hilarious and frustrating in equal measures, we love each other to bits even when we’re fighting, and I cannot ever imagine life without any one of them.

But keeping a family, even the best family, going is hard work. Breastfeeding a fifteen month-old the size of a baby hippo is hard work. Stopping a five year-old from watching Paw Patrol all day is hard work. Doing an hour of chest physio every morning before the school run is hard work. Pushing a wheelchair with one hand and a five year-old on a bicycle with the other up a hill whilst carrying the aforementioned baby hippo on your front is hard work.

Half-sleeping with a video monitor three inches from your ear every night takes its toll. Keeping a running total of your earnings in your head each month so you don’t go over the limit and lose your carer’s allowance takes its toll. Writing letters to the council to try and get the support Benjamin needs to attend nursery takes its toll. Driving sixty miles a day to and from the hospital takes its toll.

So don’t get me wrong, I need respite. I know that we are incredibly fortunate to get respite and I am embarrassingly grateful for it. When Benjy is at respite we do things we can’t do when he is with us, like taking the girls to a birthday party at an inaccessible venue, like having a late night and a late lie the next morning. Like, er, hoovering the car out and washing all the covers on his chair. So we do access respite, and we appreciate it enormously, even if we do phone morning and night to see how Benjy is doing, and our family always feels like something is missing until he comes home.

We need respite, but when often I feel pulled in three, no four (don’t forget hubby), no five (I do have a job), maybe even six (can I include me?) different directions; when I want to be there for all my children but they are all in different parts of the county; when I just haven’t got enough arms for all the cuddles that are needed, the last thing I want is for someone to take one of my family off my hands. When my child is classed as ‘life-limited,’ and the time we have with him may be short, the last thing I want is respite.

What I want is a way to be with all my family, so that they are all safe, all their needs are met, and there is plenty of time for love and laughter and cuddles. So that I have two hands to hold them and not one taken up with a syringe or catheter. So that I have two ears to hear their stories and not one always listening out for a crisis.

That’s what Rachel House provides.

We are lucky enough to be here at the moment, on the shores of beautiful Loch Leven on the hottest weekend of the year. Last night I had a glass of wine with my husband under the stars while all three children slept. Yesterday we wandered around the farmer’s market, stroked some baby lambs, met friends for a picnic, a catch-up and an impromptu ice cream – Benjy included. In the evening we played with the girls in the garden while Benjy had a bath with underwater lights. This morning I had a massage and the girls and Daddy played with Benjy in the jacuzzi. Then we’ll all sit down to a proper Sunday lunch.

Rachel House is one of Scotland’s two children’s hospices, run by CHAS, Children’s Hospices Across Scotland. The wonderful staff provide top quality care for Benjamin: they do his meds, his feeds, his physio, …, all the boring stuff, but still let us join in the playtime, the goodnight kisses and the good morning cuddles. They free up the part of my brain that’s usually filled with when Benjy’s next medications are due, how much feed he’s had, whether his chest is sounding crackly and ‘is that just dystonia or is it a seizure?’ so that I can give the girls the whole of my attention for once (if they aren’t too busy painting with the activities team, dressing up in the playroom, or charging round the garden on bikes and diggers). And they provide top quality care for us, too, in the form of comfy beds, home-cooked meals and as much coffee and cake as we can manage.

Rachel House lets me give the girls some time, our marriage some time, even get some ‘me-time,’ without missing out on my Benjy smiles and Benjy cuddles. And Benjy smiles and Benjy cuddles are very frequent at Rachel House. So no matter how many of them the staff try to sneak, there’s always plenty left for us.

Rachel House gives us time, space and support to be a family. It lets us recharge so we function better as a family when we get home. It lets us relax as if we are part of their family. Respite has its place, but when the last thing you want is respite, Rachel House is the place to be.

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Obligatory cheesy family photo courtesy Katrina Lear Photography (http://katrinalearphotography.co.uk/)

**Today marks the last day of Children’s Hospice Week, organised by Together for Short Lives. This year the aim of the week is to turn up the volume on children’s palliative care, to raise awareness about the number and needs of children with life-limiting conditions and to celebrate all the lifeline services that children and families rely on; to amplify families’ voices and change people’s perceptions about some of the myths surrounding children’s palliative care. Our children’s hospice, Rachel House is run by Children’s Hospices Across Scotland. Find out how you can help CHAS here. Thank you**

Just because it’s difficult, doesn’t make it right

A few of days ago an article popped up on my timeline. It was entitled How working in an abortion clinic changed my mind about terminations, and was written by a student midwife, Lucy Kelly. A bit ‘clickbaity,’ but I was baited and I clicked.

It is a beautifully written, convincing, strongly worded essay. The direction in which the author changed her mind (spoiler alert) was towards terminations. She wasn’t put off by what she bravely and compassionately witnessed, she was inspired by the fortitude of the women she met in that clinic. And some of what she wrote, yes, I do agree with. It is a terrible decision to have to make and I do not believe many parents take it lightly, whatever they decide.

But some of it, profoundly, no.

‘Women who are having late term abortions are only doing so if their baby will not have any quality of life outside the womb.’

Termination of pregnancy after 24 weeks may legally be considered, in the UK at least, on the grounds of foetal abnormality if there is a substantial risk that the child would suffer physical or mental abnormalities that would result in serious handicap. There is no definition, in the law, as to what constitutes a ‘substantial risk’ or a ‘serious handicap.’ Quality of life is not required to be evaluated.

Sadly, on this basis, women are undergoing mid and late term abortions of babies with Down syndrome, with spina bifida, with hydrocephalus, with cleft palate. Conditions which do not, necessarily, affect ‘quality of life,’ whatever that means. Let alone affect it so much as for it to be preferable to have no life at all. Who are we to decide, as mothers or as a society, that those lives are not worth living, or would be better not lived?

I was advised to abort my son at 38 weeks because his brain was not properly formed. Because he would likely never walk, talk or feed himself. Ours wasn’t one of those miracle stories you read in the Mail where the doctors are proved wrong. My son is indeed profoundly disabled – he will never walk, talk, feed himself. He will likely never roll, sit, or support his own head. However, I would dispute anyone who says he has no quality of life.

And, while the child’s quality of life may be one of the reasons (rightly or wrongly) for women to have a late term abortion, I know that it is not the only one. In fact, the child’s quality of life may be less important in the decision-making than the effect on the mother and any other members of the family. I know because I could have been one of those women. The arguments (and yes, there were arguments: painful, heated, lengthy and almost irreparable ones) surrounding our decision whether to abort, centred partly on our son’s likely quality of life, but partly on the impact on the rest of the family – myself, my husband, our at the time one-year-old daughter, the grandparents. Had we decided to abort – and don’t get me wrong, we very nearly did – it would have been in no small part for the latter reason: to ensure a better life for our existing daughter, to protect her from the isolation, stigma, and lack of opportunity that may come with being sibling to a disabled child. Protection that I believe could and should be achieved by changes in society: by inclusion, accessibility, support, kindness and a lack of judgment. Not by terminating the life of an innocent individual.

I do not doubt that the mothers, fathers, families, who choose abortion on the grounds of disability do so with much heart-searching. As, in fact, do those who choose abortion for other reasons. They may do it on the basis of misinformation. They may do it under strong pressure. They may do it because they truly believe they have no other option. But that does not make it right.

‘I cannot fathom how any politician can believe that they understand more about a woman’s health, and survival, than the doctor caring for her… This is not your life. This is not your pregnancy. This is not your experience. You do not get an opinion’

No, I cannot fathom that, but this is not just – or often even at all, except in incredibly rare and tragic circumstances – about the mother’s life. This is about – as Ms Kelly agrees from 24 weeks at least – a child’s life. The child whose life is at stake doesn’t get an opinion unless doctors, parents and policymakers give them one. That is our duty as a civilised and compassionate society – to give a voice to those who are voiceless.

‘Until you have lived this hell, made this decision, held the tension of two terrible fates and had the courage to make a choice that will break you to pieces, you do not get to judge a woman or decide what is best for her.’

I have lived this hell. I have made this decision. It still breaks me every single day. I am not judging these women; I am judging the circumstances they are placed in, the information they are given, the pressure that is brought to bear, and the expectations forced upon them by the misguided and mis-prioritised society that we live in.

I wonder if Ms Kelly is confusing respect for these mothers – which I share unreservedly – with agreement with their decision. Just because the decision was difficult, just because it was made thoughtfully, carefully, heartbreakingly, soul-searchingly… doesn’t make it right. The solution to this terrible, terrible dilemma is not to make it more acceptable, easier, less traumatic to abort a baby; the solution is to work change in our society so that it is easier to bear that baby, to birth that baby and to bring that baby up, whatever its nature and its circumstances.

**As a courtesy, I offered this piece to Spinoff, the site on which Ms Kelly’s article was published. They declined to publish, saying they weren’t ‘that kind of website’. I think it’s sad that they aren’t the kind of website that would like to show two perspectives on this issue; that they are willing to publish an opinion piece about a certain group of women, but not willing to publish the thoughts of one of those women; that they are not keen to be involved in working the kind of change in society that I describe above. I hope other readers will be**