More than carers

Last week we said goodbye to someone we will all – Benjamin especially – miss like crazy. But it didn’t start out that way.

I’m a proud person – I don’t like asking for help (my husband will tell you that’s an understatement).

I’m a private person – I don’t like having other people in my house. Especially not when I’m in my oldest pyjamas, haven’t cleaned my teeth, and last night’s empty wine bottles are still sitting on the counter.

I’m a helicopter mum – I don’t trust anyone else near my kids.

And I’m a perfectionist – I like everything done ‘just so’ (the aforementioned husband has long since given up loading the dishwasher).

So the thought of having strangers coming into our house first thing in the morning and last thing in the evening wasn’t comfortable. At all. But these people aren’t strangers any more.

I’m not talking about our professionals, wonderful though they are – the physios, the OTs, the community nurses, the visiting teachers, who pop in for an hour once a fortnight, into the pre-tidied sitting room, do their particular specialist task with Benjamin, write up their notes and get back to the office.

I’m talking about the agency and the private carers, who get up at stupid o’clock to cycle through the pouring rain while I’m still sleeping; who change dirty pads and sometimes dirty bedlinen, and wash bottoms, and brush hair, and dress Benjamin’s stiff little arms and legs; who take the trouble and the time to learn tube-feeding, and chest physio even though we are their only client that needs it; who bring birthday presents that cost more than they get paid to be here; who wash things up when I’m not looking and help the girls on with their coats when we’re getting late for school; who text me when Benji’s in hospital because they really care how he is; who raise money for us in their spare time; who become friends that I care about, and helpers that I could not be without.

DSC_0158

Love my birthday elephant (at least I think it’s an elephant? It’s got tusks. And stripy legs. Could it be a raccoon? But that nose… an aadvark?). Anyway, I love it.

There’s Cameron, just eighteen years old and the best-dressed young man I have ever met, who arrives on the dot at 7.15 to make sure Benjamin is turned out equally perfectly each morning, turns a blind eye to the girls hurling cereal around the kitchen, and keeps me up to date with the East Lothian gossip.

_20181130_232129

Thank goodness Cameron did my hair this morning

There’s Amanda, who whispers sweet nothings to Benji as she takes off her own shoes and socks and rolls up her trousers to shower him. He literally purrs as she washes his hair; you can see his whole body relax in her presence. She’s the kindest and most selfless person I know, and I can’t believe we are lucky enough to have her in our lives.

_20181130_232047

There are others too, Christine, who always made Benji’s bed up neater than in a hotel before she could leave, and Julie, who cycled through rain, wind and snow to get to us and still always asked how I was each morning, and Susan, who would do the ironing if she had any of her hour left over.

And then there’s Tracy, who we sadly said goodbye to after being with us from day one; who was way more competent than me at every aspect of Benji’s care from washing and dressing to feeding and medications. She drove all the way from the Borders to put Benji to bed while we bickered over our spaghetti bolognaise. Every time the doorbell rings, Caitlin jumps up hopefully shouting “It’s TRACY!” She will be sadly missed and I hope we keep in touch.

IMG-20181119-WA0001

Did you say Tracy was coming?!

I have no idea why these people do what they do. They work unsociable hours, deal with all manner of bodily fluids (at least in this house), are generally ignored while the rest of us rush around getting our own selves ready for the day or eating our dinner, and are paid peanuts (if they are paid at all: if we cancel with even a few moments notice, even if they are already on their way to our house, for instance if Benjamin goes into hospital suddenly, the agency carers are paid nothing).

Swallowing my pride and baring our struggles to a social worker to get our eight hours care a week was one of the best things I ever did for our family. We have all got completely used to having people in the house (perhaps too used to it; I gave Amanda a bit of a shock by stripping down to my underwear to put my clothes in the washing machine the other day), that without them the evenings seem quiet, and the mornings, well the mornings are just chaos. Having people help with Benjamin at the critically busy times of day allows all our children to get the care and attention they deserve. It means we sometimes even get to school on time. It’s brought us new friends and a new perspective on our local community. And it’s a good incentive to buy some new pyjamas.

Advertisements

End of an era

My eldest daughter, Jackie, nuzzled her way up and latched on to my breast whilst I was still in the recovery room after her caesarean birth over six years ago, and I’ve been physically nourishing my children ever since. In fact, I’ve been either pregnant or breastfeeding (or both) for longer than I was in High School. From the start of my first pregnancy, I was always keen to breastfeed if I could – I knew it was more convenient, cheaper, and healthier for myself and my babies; but I had no idea what a physical and emotional pathway it would take me on, or how long that journey would last.

429954_253895268030061_1225564724_n

First time for us both

Jackie weaned naturally from the breast when she was eighteen months old, and I was six months pregnant with her brother. Benjamin was a little harder to get started, but he fed slowly on drips of expressed colostrum from a syringe; then, thanks to the amazing guidance of the nursery nurses on the labour ward, graduated to both breast and bottle. He surpassed all expectations in his ability to feed and gain weight, and we left the labour ward five days after he was born. By the time his gastrostomy was eventually fitted, I was already pregnant with his baby sister.

Caitlin was a greedy little thing from the start. She fed for eight hours solid in the delivery room, while I was still attached to a syntocin drip and waiting for a bed in the labour ward. As a baby she would regularly drink more milk than her little stomach could handle – with inevitable consequences. By the time she started nursery at nearly a year old, she was able to go eight hours without milk, but morning, evening and night (and during the day on non-nursery days) she would still ask for ‘beebee,’ or just clamber up and pull down my top. She can feed lying, sitting, kneeling, standing up; whilst I am sleeping, cooking, tube-feeding Benjy, or reading a story to Jackie. It’s the easiest way to lull her to sleep, and the nicest way to comfort her when she is upset.

Caitlin is two and a half years old. I’ve breastfed her for more than the World Health Organisation’s recommended minimum time, and longer than 99.5% of UK mums. I’m starting to get tired of spending my evenings sitting in a darkened room feeding her to sleep, of not being available to my other children when they need me, of only wearing saggy old bras, stretchy tops and quick-access cardis. I know she doesn’t need the nourishment any more – she has a huge appetite for solids! Hopefully, she’s old enough to understand a little. She talks in long sentences, is ready to abandon her cot for a big girl bed, and almost ready to toilet train. So, after a few days of explaining, “Beebee’s going to run out soon. Beebee’s nearly empty,” our breastfeeding journey also has come to an end.

To be honest, she’s taken it much better than I have. A couple of nights of cuddles with Daddy (I’m so lucky to have a hands-on, supportive partner) and Caitlin has gone to sleep with remarkably little distress. She still comes asking when she’s tired or upset, but after a quick reminder that, “Beebee’s all gone now,” she can easily be distracted with a toy or something yummier to eat.

To be honest, I was devastated. There were doubts. There were tears. I was terrified that my little girl would think I was rejecting her, would be utterly confused by the change, would hate me. I was worried about how I will now fulfil my role as a mother. I was lonely as I sat downstairs waiting for Daddy to finish putting her to bed. I was sad that one of the main things my body was built for, it will never need to do again.

And the pain – oh my goodness – pain worse than when my milk came in as a new mum! I had hoped that Caitlin really wasn’t taking very much milk any more, and there wouldn’t be much of an adjustment to make. When my engorged breasts showed me how much milk I was making, I felt even more awful for taking it away from her.

Ten days on and we’re both doing better. My boobs are starting to settle down, even if I can’t lie on my front just yet. Caitlin will allow either me or Daddy to put her to sleep with very little fuss. She still comes into our bed for cuddles in the night, but it’s no more than cuddles (I’m still keeping my top on just in case!), and long may they continue. It still breaks my heart when she occasionally asks for milk, when she’s upset or just taken a tumble. It takes all my strength not to say “Oh go on then, what harm could it do?” But if Caitlin can be strong, then so must I.

Maybe in the longer term this will actually enable me to be a better mother? I’ll be less stressed because I’ll have more time for work and play. I’ll feel less guilty because I can do my share of the chores in the evening instead of playing on my phone behind Caitlin’s back while my husband does the laundry and makes packed lunches for tomorrow. (Yes, I know breastfeeding is an important job too, but sometimes it’s been hard for me to feel that).

Maybe I can find time to get fit in the evenings. Maybe I can stop eating biscuits all the time (I’ll have to stop eating biscuits all the time now I’m not burning 500 calories a day making milk!). Maybe my husband and I can spend our evenings together sometimes. Maybe we can even leave the children with a sitter and have a night out. Maybe I can go out with my girlfriends, or to the committee meetings that always seem to be scheduled for feeding time. Maybe I can dawdle home from my pilates class instead of rushing to be back for the end of bath-time.

Maybe I can be more available for all my children. On the second night of our weaning experiment I was able to camp out in the garden with Jackie – just for fun! If Benjamin is awake in the night, from now on I’ll be able to go and lie with him for as long as he needs me, rather than just popping his projector lights on and leaving him to his own thoughts. With two adults now able to meet the needs of all three of our children, we have more flexibility. Maybe this is the right thing for all of us.

I’m so lucky to have had only good experiences with breastfeeding, to have been physically able to feed for so long, and to have been supported by my family and community to do so. I was never one to keep it under wraps – my children wanted to feed anywhere and everywhere, and wouldn’t tolerate being hidden away under a scarf or muslin. During my first few weeks I was sitting by the checkout in Sainsbury’s breastfeeding Jackie, and an older lady came up to me, not to complain, but to tell me how “lovely it was to see”. When in hospital with Benjamin, the nurses always let me bend the rules and bring Caitlin onto the ward too – they would even sneak me cups of tea and pieces of toast to keep me going. The only problems I’ve encountered have been my feeding children’s biting, tweaking, pulling, hitting, and twanging…

I’m proud of what my body has done over the last seven years, and immensely grateful that it was able to. I’m amazed at how my outlook has changed through being a first-time mother, then mother of a child with complex needs, then mum of three, and a breastfeeding mother to all of them.

Because it has been so easy, so comforting, and so special, breastfeeding has become part of my identity; almost a crutch. Pregnancy and breastfeeding made me feel like a real woman. Now, I have to find a new way to feel like that. Now, I have to mother my children by my words and actions alone. Now, I have to see if I really have what it takes, and that’s scary. With big changes coming up – Benjamin will be starting school, and I’ll be going back to work in a couple of weeks – I’m no longer quite sure what kind of mother I am or who I will become. I guess I’ll start by dawdling home from that pilates class and shopping for some lacy bras.

IMG_20180621_140332_073.jpg

Fake it ’til you make it

Someone once told me that, however bad you’re feeling, simply smiling will make you feel happier. It’s to do with the physical action of moving your face muscles triggering neural pathways involved in emotion. Or something. I don’t know whether it’s scientifically proven, anecdotal, or just bullshit.

Anyway, I wonder if the same can be said of looking like you’re in control? Coping. On top of things. If I behave every day – on the school run, at work, in all Benjamin’s appointments, when I’m changing shitty nappies, when I’m frantically suctioning his airway until he can breathe – as if this is all a walk in the park, then is it? If I keep putting one foot in front of the other and holding one tiny person by each hand instead of rolling on the floor and screaming like a toddler am I doing just fine? Or am I just kidding myself? Am I actually kidding anyone else?

I sure want to look like I’m coping. I want to be smart, svelte, smiling and on time, with matching socks and freshly brushed children like everyone else. Why? Because I’m proud (too proud). I’m not about to prove right those I overheard saying, “I don’t know how she’ll cope with three children so close together.” I’m not about to live up to their prediction that, “The eldest will be neglected.” I will bust a gut to show them that I am not only coping with my three children but that all of them are completely loved, cared for, listened to, engaged with, taught, and nurtured.

And because, actually, coping has always been something that gives me a little buzz. At school I loved to be the responsible one – the pupil the teachers could trust to run errands not just reliably but well. I like being the colleague that people can call upon to take on an extra task and know that it will be done excellently and on time. The more things I volunteer for, the more I can kid myself that I am useful, my life is meaningful and valuable, and that I am in control of what I do rather than simply responding to each demand as it arises.

And, because I have to. If I don’t keep on top of the childrens’ calendar and my work commitments and the shopping and the laundry and feeding the guinea pigs and mowing the lawn and making sure the church magazine is out on time who’s going to do it?

_20180502_145057.JPG
See, they get new shoes. She’d only gone up three sizes…

Yes, we are very lucky to have a ‘village’ that would do their best to step in in a crisis (and we probably wouldn’t have to cook for a month!) and yes, we have a social worker and six hours agency care a week, and yes, we can afford to pay for some day-care for the girls when we need it, but in the end the buck stops with me to organise and coordinate everything – to carry the ‘mental load.’ With school and nursery and reading practice and homework and swimming and music and ballet and a house and a car and all Benjamin’s appointments and prescriptions and equipment and a little bit of campaigning and a little bit of work and everybody outgrowing their shoes all the time, there are just so many balls to drop!

Are they starting to fall? How long have I got before people realise it’s all a façade? Where the professionals once said, “You’ve done so well with Benjamin!” Will they start realising that I should do so much more? Where friends once said, “You’re always on top of things!” Will they start noticing that my to-do list is so long things are dropping off the bottom? That the girls have been promised new curtains since I got my sewing machine, the Christmas before last… That I told a colleague I’d write a ‘topical’ paper two summers ago… Do my family notice that I’m less patient, my sense of humour has shrunk, I drink more wine, and we’re always out of salt and vinegar crisps?

Now that two out of the three children are mobile and talking but only one of them has any sense of danger or ability to understand reason, I am seriously outnumbered. Not to mention the fact that none of them sleep through the night… When I’m home alone with them I’m a nervous wreck: planning, imagining worst case scenarios, trying to second guess which one will need me next, how to keep the other two happy at the same time, and when it’s safe to go for a pee. And out of the house is worse.

Some weeks I feel like I’ve embarrassed myself, let everyone down, like I can’t do this at all; others I feel I have totally got this. Bizarrely, the latter is usually when things are busiest, Benjamin is poorliest, and I am most overstretched. It’s when we’re whiling away a sunny afternoon at the park because we don’t have to be anywhere particular that things seem to go properly tits-up. Perhaps I really do thrive under pressure? Or do I only realise what a car-crash my life is when I have time to think? And am I the only one? Is everyone else doing better? Or are they too just winging it, firefighting one crisis after another and relying on chocolate and a good mascara to face the world? Are we all swans, swimming serenly past one another as we paddle frantically under the surface to stay afloat? And if I keep faking being in control will it one day actually come true?

Torn

We are just back from weekend trip to Aberdeen. I say ‘we’. I mean my husband and I, and the two girls. Our first trip away without Benjamin.

I think we pulled off a pretty good impression of a ‘normal’ family on a ‘normal’ trip. Dare I say ‘minibreak’? A few bags slung into the boot along with sledges just on the off-chance – no squeezing in of feeding supplies, nebulisers, and suction catheters around the wheelchair. We stayed in a simple family hotel room – no phoning round for hours to find anywhere with a wheelchair accessible room that would sleep five (actually, I did phone around for hours before I remembered that, this time, Benjy wasn’t coming with us. Doh.).

But for me it was far from normal. My normal is with Benjy, and Benjy was away having his own holiday. We are fortunate to have access to a specialised, nurse-led, NHS children’s respite service, the kind of service that is under great threat in many parts of the country. We are grateful they can accommodate Benjamin for a weekend once a month – enough time for us to really make time for the girls. We are thankful that the staff have worked with us to get to know Benjamin well enough that we can entrust him to them.

But still, I’m torn. I don’t want to move too fast. We could have flown to New York for the weekend! But no, take it slow, baby steps, for all of us but mostly, if I’m honest, for me. So Aberdeen was a test run, somewhere we could get back from within a few hours at any time of the day or night. A test run for the logistics, yes, but also a test run for the emotions.

A six year old girl in snow-gear, arms outstretched, standing on a rock on a snowy hill

On top of the world (or a small hill in Aberdeenshire)

Sure, it was simpler and easier. Sure we could do things – like visit friends with inaccessible houses, like climb a snowy hill, like stay out later than usual – that we can’t do with Benjamin. The girls had a ball, singing songs in the car, playing in the snow, exploring the hotel, ransacking the snacks, a longer bath and a later bedtime. I can’t say we got any more sleep than we do at home – two excited girls and a late night in one room doesn’t compute. Add to that all the packing, and driving. It wasn’t exactly a rest, and it wasn’t a family holiday – how could it be, without Benjamin?

Sure, Benjy doesn’t seem to miss us. He enjoys the attention and the activities and the lovely lady nurses! But does he realise? Does he know that we’ve gone away without him? That we’re having family time without him, because it’s easier; because it’s too much trouble to take him with us? I wouldn’t dream of leaving his sisters with anyone else overnight at the age of four; how can I justify treating him differently? Especially when his needs are so great and his time with us may be short.

What if he gets sick and I’m not there to interpret how he’s feeling? What if the worst happens? Even if the worst doesn’t happen, we are all missing out on precious time with Benjamin. Will we regret these lost hours when there are no more hours with him to be had? Have I drunk in enough of him that I will remember his scent? The feel of his cheek? The little noises he makes when he senses I am near? Have I taken enough photos of his little freckled nose? Have I let his sisters have enough cuddles to last them a lifetime?

But his sisters can’t live their lives within an hour of the hospital. They can’t keep missing out just in case. They need to live now, experience the things their friends do now; they need Mummy and Daddy’s undivided attention, now. And I need time away from Benjamin to realise just how much I do miss him, to appreciate how much he means to me as a little boy, as my son, as my daughters’ sibling, rather than a patient and a full-time job.

So, hard though it is, it is good for us all to have this time apart. It wasn’t a family holiday and it wasn’t meant to be. All we can do is to make the most of our time away, to do things we can’t usually do, go places we can’t usually go, to spoil the girls and spoil each other, to try not to argue and try not to feel guilty if we do. And when we get back together, all we all want to do is hold Benjamin close, hug him tight, listen to his welcoming murmurs, kiss him gently, kiss him hard, hold him some more and appreciate being a family once again.

Just a cold

The males in our household have been stricken with a cold. My husband has adopted the standard attitude of shuffling around the house looking sheepish, occasionally being wracked by paroxysms of coughing that needlessly shake his entire body, and ostentatiously ironing handkerchiefs and boiling kettles for uncertain purpose. This in itself is pretty hard work for the females of the family (with the exception of the guinea pigs who seem remarkably unbothered by the whole thing).

DSC_4532.JPG

No preschool today

Benjy, however, takes it to another level. It usually begins with a sudden dramatic increase in secretions (i.e., snot). During his morning physio routine, a white froth starts pouring from his nose. He’ll need suctioning every half an hour, day and night, rather than twice a day.

He’ll be uncomfortable – as you or I would be – but he cannot tell me so. Instead, his muscles will tense, he’ll be stiff, hot, jumpy and irritable, making me fear a seizure. He won’t sleep, and neither will I.

After a couple of days the secretions will thicken and he’ll wake choking in the middle of the night. This is the scariest time, frantically suctioning a frightened boy to clear enough of his airway so that he can breathe. His heart rate rockets and so does mine. I try to remember that, despite all his complex requirements and specialist equipment, Benjamin is still just a little boy with a cold. I give ibuprofen and Calpol, drop Olbas oil on his pillow and place bowls of steaming water in his room.

Then the wheezing starts – ‘viral induced wheeze’ they call it. Although his secretions are clearing, his oxygen levels are dropping. So it’s sixteen puffs of his salbutamol inhaler a day – twelve at scheduled times and four to keep in reserve for that middle-of-the-night panic.

A week in, and when most of us would be starting to get over it, the rest of his system starts to respond. This is what would have put us in hospital last year but now we are (hopefully) equipped to deal with it at home. With Benjy – and this is typical of jejunum-fed children, I’m assured by our patient specialist gastrointestinal nurse on the phone – his output of stomach juices and bile increases dramatically. So dramatically that they can’t all drain out into a bile-bag, but end up being vomited out of his mouth and nose. Now I know all our kids are superheroes, but sometimes I really wish Benjy’s superpower wasn’t firing green slime out of his nostrils onto his poor unsuspecting support worker…

IMG_20171220_221317_051.jpgWith the vomiting comes an increased risk that Benjamin will aspirate his stomach contents into his lungs and cause a chest infection. Our amazing team of ‘rapid response’ specialist respiratory physios come to the house to assess him and take swabs for analysis. We embark on a cause of strong antibiotics in addition to the prophylactic antibiotics that he is on permanently through the winter, just in case. We put Benjy to sleep on his side (worse for his back, better for his lungs). I ‘sleep’ with the video-monitor inches from my face, ready to leap up when I hear him cough. I wonder how we’ll manage in the New Year when we move him to a downstairs room.

The antibiotics have their usual effect of (without going into too much detail here) producing nappies that require an entire change of clothes, several times a day. I resort to sitting him on an incontinence pad to save washing his chair, car seat, or buggy. And I double his daily dose of Imodium. But he goes 48 hrs between bile-vomits, which is an improvement. We feel safe to send him to our wonderful NHS respite centre for a couple of nights. I feel glad they will be dealing with the nappies. I keep my fingers crossed they don’t panic and send him to the hospital.

I don’t know how much it has cost the NHS to see Benjamin through one simple cold – providing us with a sats monitor, suction machine, catheters, nebulisers, inhalers, medications; giving us the expert assistance of doctors, pharmacists, nurses and physios. I know it’s cost our family about a fortnight’s sleep, two swimming lessons, one meeting about Changing Places toilets and a whole lot of Christmas shopping.

But for all of us, this is infinitely better than having Benjamin in hospital, splitting our family up and putting him at risk of catching all manner of other winter bugs. I’m proud of what we’ve achieved, and I’m grateful for the equipment and training we’ve been given and the trust that has been placed in us, to keep Benjamin safe at home. Team Benjamin has risen to the challenge, so far.

IMG_20171218_200840_123.jpg

On the mend

The long haul

The world is closing in around us. Around my son, his siblings, and me.

My children are all growing up so fast. I can hardly believe Benjamin is four – he’ll be starting school next year. My eldest is already a grown-up P1 girl and loving it. And my littlest is walking, running, and jumping with boundless energy. As a mother, I’m moving out of the cloistered new-born weeks for the final time. The world should be opening up with opportunities for all of us.

A three-year old boy, smiling, in a special needs buggy, wearing glasses, a woolly jumper and smart new blue boots with velcro straps

Pleased with his new shoes

Benjamin is doing spectacularly well. I won’t bore you any more with the medical interventions we’ve employed which have got us to this point. We’re just so chuffed to see him putting on weight, and length, and developing a personality (even if that is characterised by pretending to be asleep to get out of things he doesn’t want to do). I’ve had to ask for a new chair, a new stander, a new wheelchair, and new shoes – and I’m immensely grateful to have been supplied with these without question. He needs bigger nappies and that means a trip to Primark (no expense spared!) for bigger trousers. We are even starting to think about having to hoist him to protect our backs.

We’ve moved on from ‘He won’t survive his birth,’ and ‘He’ll likely not see his second birthday,’ through ‘He’ll be in and out of hospital until he’s five,’ to the gobsmacking (in a good way) pronouncement of our consultant last week: ‘He may well remain stable until he hits puberty.’ This is amazing! Every extra day with Benjamin is a bonus – so the prospect (fingers crossed, touch wood) of years more smiles and cuddles is just a dream come true. And this new-found, hard-earned, and still-surprising health should pave the way for him to get out and about in the world.

But. The world is closing in around us. Because the world isn’t built for us. Let me go back to the hoists. This might sound like a small change – but actually it’s a massive leap. The transition from lifting to hoisting is a tipping point. It marks the end of being able to take Benjamin anywhere, in a backpack, baby carrier, or buggy, to being limited to places that are wheelchair accessible and – if we stay for more than a few hours – have a bathroom with a bench and hoist. My mother-in-law has kindly invited us to holiday with them next summer – but by next summer I don’t even know what kind of accommodation we would be able to stay in. Certainly it won’t be long before we’ll have to pay over-the-odds for a wheelchair-adapted room or cottage.

Now toilets really aren’t the focus of this post, but they are a good marker of how inclusive and accessible our country really is: and there are only just over 1000 fully accessible Changing Places toilets that Benjamin can use in the UK (that’s roughly one every 90 square miles. That’s fewer than half the number of toilets in Wembley Stadium, as Our Inclusive Home so tellingly pointed out). Finally, thanks to the efforts of an incredibly dedicated band of campaigners, Changing Places did hit the mainstream news in recent weeks, and have been discussed everywhere from Facebook to the Houses of Parliament. But is this going to lead to change? Ikea and Wetherspoons are leading the way. Center Parcs are following suit. Yet most of the major supermarkets, cinemas, and department stores couldn’t give a ****, or so it seems.

A three-year-old boy in a special needs buggy, squinting into the sun, in front of a grassy lawn and a ruined castle wall, beyond which is a blue sea and sky

Getting out and about

So, the world is closing in around us, because if we want to go out with Benjamin we are very soon going to be limited to those 1000-odd places, including Ikea and Wetherspoons of course, so at least we can get a beer and some ödmjuk… Soon, our children’s grandparents are going to have to come to us if they want to see us, because we won’t be able to get Benjamin into their houses. I can’t imagine we’ll be able to camp for much longer. The number of friends we’ll be able to visit will become vanishingly small. I won’t be able to take Benjamin to try on those trousers in Primark, or to the cinema, on a long train journey, or to the zoo.

I’m readjusting my already readjusted life plan. In good ways – thinking about where Benjamin will go to secondary school – and in ways I’m not so sure about, like installing a modern wet-room in our characterful Victorian house, like wondering whether I’ll ever, realistically, go back to travelling the world for work. And I’m readjusting for my daughters too. I need to get them used to the long-term idea of having a disabled brother. Undoubtedly they will miss out on childhood activities – holidays abroad, camping trips, family hikes, even family days out on our local beach. Will Benjamin become a millstone around their necks when I am gone?

I have so many questions now. How will society treat Benjamin when he’s no longer a cute little boy, when he’s a hairy, hormonal teenager, or a grumpy old man? What on earth will he do all day when he leaves formal education? How much of an environmental impact do decades of disposable nappies have and is it worth fighting for an alternative? Will he get PIP when he turns 16? And, what if I die before him?

I don’t have the answers. I do know that these are not really questions about Benjamin but questions about society. Any problems we might face over the coming years are not because of Benjamin and his disabilities, but because we live in a world that values profit and popularity over people, that pays lip-service to equality but neglects to make reasonable adjustments towards inclusion, that celebrates diversity but assumes the only purpose of prenatal testing is to facilitate the eradication of ‘diseases’ such as Downs Syndrome.

To those who would say, ‘We warned you. You asked for this. You knew at 38 weeks what was coming. You had the chance to avoid all this so don’t come running to us complaining about the impact on your daughters and asking for a bench and hoist….’ No. NO. The value of my son’s life has nothing to do with the impact he has on anyone else’s. Nothing, nada, zilch. However many days, weeks, years we are blessed with, his life is 100% worthwhile. He has a right to life and a right to live life to the full, and it’s up to us – all of us – to make it work.

A four-year old boy, beaming, wearing a silly hat and surrounded by balloons that say '4'

Here’s to the next four years and beyond

Portrait of a three-year-old boy squashed into a brown corduroy coat and woolly bobble hat, looking grumpy

But do I have to go out when it’s snowing, mum?

So if I’m going to have to write a few more letters (Fort Kinnaird, Edinburgh Zoo, Dobbies, you’ll be hearing from me again), if I’m going to have to host a few more Christmas dinners rather than travelling to others’, if my daughters are going to learn first-hand the value of neuro-diversity instead of biodiversity, sobeit. We are, a thousand times over, the fortunate ones. We have three beautiful children, and the longer we get to spend in their presence the more blessed we are. I will cherish every minute, be grateful for every day, and fight for everything that is right. We’re in it for the long haul.

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??

IMG_20171023_201349_926.jpg

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.”

IMG_20171023_200908_936.jpg

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.

IMG_20171023_201520_227.jpg

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.”

IMG_20171023_202817_888.jpg

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).

DSC_4003.JPG

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.

IMG_20171023_202942_425.jpg

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.