Postcode Lottery

I’ve always thought of myself as fortunate. Opportunities have landed in my path. My parents bought a house in the catchment area for a good school. My teachers saw to it that I got into a good university. That good education got me a job that I love. I have three beautiful children. My husband works hard so that I don’t have to choose between my career and spending time with my children. Childbirth aside, touch wood, I have never needed a night in hospital. I have not yet been reliant on benefits. We have been able to choose, get a mortgage for, and afford a deposit on, a perfect home in a stunning part of the world.

Benjamin looking contented, wearing a warm jacket in a SN buggy

Comfy in his new buggy

Now we have Benjamin, still, we are fortunate. The healthcare he receives is second-to-none. He gets all the therapy in the community that he needs. All the equipment that he requires is also provided (albeit a little slow to arrive at times). He attends a wonderful SEN nursery and will attend a wonderful SEN school. He has a dedicated pair of support workers who keep him safe (and give him many, many cuddles) whenever I am not with him. Social care-funded agency carers help us for six hours a week, Benjamin gets two nights a month in a specialist respite care unit, and we have the support of our children’s hospice whenever we need it. Benjamin gets disability living allowance, we have a car through Motability and a blue badge. Our house will soon be adapted to suit Benjamin’s needs and the local authority will fund 80% of the cheapest option as quoted by the cheapest supplier; moreover, the work will should be completed by the time we really need it! Yes, we had to fill out some forms and write some letters. Yes, we had to dig around to find out what we were entitled to and we had to fight a little to get some of that. Yes, once or twice I have had to write to my MP and the local paper. But, generally, we get what Benjamin needs and what we as a family need. We are indeed fortunate, or so I thought.

Benjy in his kitchen chair, with Caitlin sitting on his lap, her hand on his chest as if doing chest physio

Expert physio

Then, I started talking to other parents. Some families, in local authorities not too far away, get 12 hours nursing care a day. Some families get additional care in the school holidays. Some families received an automatic referral to psychological support to help them to deal with the trauma surrounding giving birth to a child with severe disabilities. Some families get twenty new syringes a day. Some families get liquid drugs so they don’t have to faff around crushing and grinding tablets to within an inch of their life to ensure they don’t block the feeding tube… I started to feel less fortunate. I started to feel jealous.

Then, I started talking to other parents. Some families’ only respite centre is being closed down. Some families have to self-fund essential equipment such as a suitable wheelchair. Some families can’t get a blue badge even though some days their child can’t get out of bed. Some families have to fight and fight and fight and go to court and pour every ounce of their energy and resources into fighting to get their child into a school that simply meets their needs. Some parents are forced to give up that battle, give up their career, and home-school their children. Some carers are carrying 50 kg children up and down stairs, or risking their backs lifting them into the bath because adaptations plans have stalled. Some families are crammed into a single room in a bed-and-breakfast because their local authority can’t find, won’t build, or refuse to adapt, a suitable property for their needs. Some children have seen half-a-dozen different paediatricians and never the same one twice. Some children have been discharged from all the services that might be able to help them. Some parents are accused of faking their child’s condition, or of poor parenting. Some are pushed so close to breaking point that they fear having their children taken away… Some families have their children taken away. I started to feel like the luckiest mother on earth. There, but for the grace of God, go I.

Why does it have to be like this?

Why do families at different ends of the same street, let alone different ends of the country, have to meet different criteria to get the same support? Why do families in very similar circumstances receive such vastly different levels of care (if any)? Why are we placed in these situations where we feel jealous, or guilty; where we have to compete? Why can’t there be a level playing field? Why isn’t access to support – health, education, social care, housing, advocacy – based on need and not on where you live, how deep you dig for information, how hard you’re prepared to fight, how well educated you are, who you know, who you can afford to employ, whether you are able to give up work, even whether you earn little enough to qualify for support (yes, it can work both ways)?

A circle of reusable nappies in a range of pastel shades

‘Why does it have to be like this?’ I asked Jenny Gilruth MSP at a recent round table discussion at the Scottish Parliament, Getting it Right for Parents of Children with Exceptional Healthcare Needs. She said I couldn’t expect everything to be centralised. But I’m not asking for provision to be centralised, I’m just asking for the rules, the criteria, the tick-boxes, the ‘decision making tools’ to be standardised. It could be as simple as saying ‘which area provides an example of good practice in terms of [insert essential service here]? Let’s employ their strategy across the board.’ How can it be so difficult to ensure, for example, that all children with continence needs should receive enough suitable continence products to meet their needs from the same age? Presently, some NHS boards provide pads from age three, others age five; some areas won’t supply pull-ups and others won’t supply cloth nappies; and some children get three pads per day while others get an unlimited supply. It should be as simple as every relevant organisation paying more than lip service to GIRFEC (Getting it Right for Every Child, in Scotland, or its English and Welsh equivalent Every Child Matters).

We might live at different ends of the country, but unlike some politicians, policymakers and bureaucrats, SEN parents do talk to each other. We know there are discrepancies, huge discrepancies. We share as much knowledge and as many tricks as we can to help each other out, to level the hideously uneven playing field we find ourselves on. We try to get around the borders that divide us and to fight as a team, while the system tries to make us compete to be the loudest voice clamouring for limited funding and limited support. We know it’s a postcode lottery, and we know it’s all our children that are losing out.

Lottery tickets, a pen, Euro notes and coins

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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).

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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.

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On the mend

What should a four year old be?

At four, Benjamin should be a cute, tousle-headed, tearaway by now. In and out of the paddling pool all summer; under my feet all winter. Chattering nineteen to the dozen. Learning to pee on a ping-pong ball. Spoiling his big sister’s games, and being too rough with his little sister. Big enough to be making his own way at preschool; still just little enough to creep into my bed for cuddles. Except, according to the doctors’ first predictions, he shouldn’t even be here at all.

I wonder what Benjamin would say about what he should be?

“Well mum, I am definitely tousle-headed and I’m totally cute – and don’t I know it? You can see I’ve got an eye for the ladies, brunettes in particular. I give them a wink, a sideways glance and that lopsided smile and they’re smitten. But if you’re there, mum, I’ve only got eyes for you.

“And I do love the water. I might not be in and out of the paddling pool but I love it when you trickle the bathwater over my chest. It’s a rare treat that we go swimming – but when we do I can stretch out my stiff muscles like nowhere else. Please take me more? I know you’re nervous that you can’t support my head. But I trust you. Trust me? I’m lighter in the water and you might feel stronger if you try it.

“I know I’m under your feet all the time. My chair, with its sticky-out wheels and sticky-outer handle. My medicines, with their sticky drips everywhere. My tubes and wires, always getting tangled and caught up. I know it takes you longer to do everything, because you can’t just potter around the house, you have to take me with you, moving me from room to room, chair to chair. Your constant shadow. I love to be your shadow. I love to watch you work, listen to you hum along to the radio. I love it when you let yourself have a little dance. I wish you would dance more (although I wish we didn’t have to listen to Radio 2 all the time).

“I might not chatter but you understand me, mum, even though I don’t talk or even make baby noises. You know when my body language says I’m uncomfortable. You know when something has caught my eye. You know when I’m tired. I wish you would trust yourself more because you know. You’re my voice, mum. I know you’re tired of advocating, questioning, pestering, and fighting. I feel bad, mum, that you have to do all that for me. But I know you wouldn’t have it any other way. I know, when you’re in the mood, you love a good fight against the world.

“I know I’ll always depend on you to change my nappies, to feed me, dress me, bathe me, to make sure I get the right medicines at the right time, to do my physio and to clear out my lungs when I can’t cough for myself. Sometimes you just get on with it, silently: I’m just another task that has to be done. Sometimes you linger over it, taking the time to kiss my eyelids, to massage my feet. To drink in my special scent. I drink in yours too. You are my world.

“I love my sisters. I know each of them by sight, sound and scent. I hope they don’t resent me. I know that by my very existence I spoil more than just their games. I cherish the times when they come to me, lay their heads on my chest, and kiss me. But I love just to watch them too. They are so colourful, so shiny, so busy. I’m never bored when I am with them. I light up when Jackie gets home from school, or Caitlin wakes up from her nap.

“I hope you’re proud of me, mum. I work so hard. I know you are proud of me. I hear you tell people over and over again how good I am at holding my head up now. How I can look to the left and hold it. How I wave hello (but only you know that’s what I’m doing). I hope you know, mum, that at the end of a therapy session, when I’m so exhausted all I can do is dribble, that I’m proud of myself too.

“I know you’re scared to let me go to preschool, mum. You think ‘They won’t know him like I do. They won’t keep him safe. What if something happens?’ But I’m four now; within a year I’ll be at school. And we both need some space, mum, and you will feel less guilty about skipping my therapy if I’m getting it there too. I hope that might mean you have more time for cuddles. Because even though I can’t creep into your bed, I live for your cuddles. When my whole body is tense and fighting against itself, in your arms I relax. When you stroke my hair I feel special. When you rub my feet I feel like you and I are the only people on earth.

“I know this wasn’t in your plan, mum. But when does life ever go exactly to plan? Especially when you bring children into the mix. All I can do is live from day to day and I wish sometimes you would too; maybe then you would worry less, dance with me more, and cuddle me tighter.”

Four years of teaching from you, Benjy and I’ve still a lot to learn. Big cuddles from mummy on your birthday xxx

An earlier version of this article was highly commended in the Carers UK Creative Writing Competition 2017.

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.

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.

Not just a mum…

This post was written for the #SEND30daychallenge, day 9: ‘Not just a mum.’

I’m one of the (few) parents who actually don’t mind being called ‘mum’ by professionals. Yes, I do have a name, but in the context of Benjamin’s health, education or care I see being called ‘mum’ as an affirmation of status. I am his mum: the one who knows him better than anyone else; the one who loves him more than anyone else; the one who will stop at nothing to get what he needs and deserves. I’m not ashamed to be mum; I’m proud of it.

In fact, I was more shocked the other day when we had some men doing work on the house. One of them said to another (he didn’t know I could hear), ‘Is the woman there? We need to check something with her.’ Woman? I’d never thought of myself as a woman. I’m not old enough, not mature enough, not experienced enough to be a woman.

Anyway, here are a few of the other things I am, when I’m not being just a mum. Woman or not, no wonder I’m tired!

  1. Wife
  2. Daughter
  3. Granddaughter
  4. Sistergirl-2501089_1920
  5. Cousin
  6. Niece
  7. Aunt
  8. God daughter
  9. Friend
  10. Lover
  11. Employee
  12. Colleague
  13. Botanist
  14. Scientist
  15. Researcher
  16. Photographer
  17. Writeralphabet-2518264_1920
  18. Blogger
  19. Speaker
  20. Teacher
  21. Student
  22. Campaigner
  23. Benefit claimant
  24. Taxpayer
  25. Lender
  26. Borrower
  27. Christian
  28. Parishioner
  29. Voter
  30. Feminist
  31. Environmentalist
  32. European
  33. Human being
  34. Ape
  35. Animal
  36. Gardenerlawnmower-384589_1920
  37. Cleaner
  38. Cook
  39. Housemaid
  40. Laundrywoman
  41. Handywoman
  42. Hairdresser
  43. PA
  44. Accountant
  45. Secretary
  46. Tea lady
  47. Nurserubber-duck-1404369_1280
  48. Carer
  49. Doctor
  50. Pharmacist
  51. Physio
  52. Therapist
  53. Dietician
  54. Chauffeur
  55. Ambulance driver
  56. Advocate
  57. Cheerleader
  58. Interior designer
  59. Needlewoman
  60. Fixer
  61. Architect
  62. Challenger
  63. Defender
  64. Warrior
  65. Worrier
  66. Spender
  67. Saver
  68. Home-owner
  69. Guinea-pig-keeper
  70. Recycler
  71. Composter
  72. Breastfeeder
  73. Real nappy user
  74. Reader
  75. Viewer
  76. Listener
  77. Shoulder to cry on
  78. Decision maker
  79. Stake holder
  80. Pessimist
  81. Optimist
  82. Introvert
  83. Snob
  84. Slob
  85. Pedant
  86. Nag
  87. Sleeper
  88. Dreamer
  89. Hippy
  90. Sun worshipper
  91. Puddle jumper
  92. Channel surfer
  93. Dancer
  94. Hugger
  95. Kisser
  96. Giver
  97. Receiver
  98. Peacemaker
  99. But most of all I am mum…
  100. … and I’m a very lucky woman.

What would you add?

#send30daychallenge

Gone camping (again)

By popular request (although the friends due to come camping with us later in the year may regret it), there follows a report of this year’s Family Summer Holiday: A Wet Weekend in Wooler. Not that I’ve got anything against Wooler. Well not much. Read on.

They say rain sounds much heavier from inside a tent than it actually is outside. I don’t know about that, but I do know that if you pitch your tent next to a river, it sounds like it’s raining all the time. Which it was. They also say* a bog feels much squelchier through a groundsheet than it actually is underneath. This is probably true. It is also certainly true that everything seems harder when you have had less than two hours’ sleep per night for the last week due to a poorly eighteen-month old who just wants to be held and fed all the time. And that everything is more worrying when you take a medically-fragile child away from the comfort-zone of home and hospital. So, from a balanced viewpoint, we probably had a great holiday.

The campsite owner thought he was doing us a favour by offering us a choice of sites. Of course, he doesn’t know that we are the most indecisive people on the planet and that, whichever site we chose would inevitably result in one of us feeling that it was the wrong choice, one of us feeling guilty for making such a bad choice, and both of us blaming the other one for those feelings, for the rest of the holiday.

Anyway, we eventually selected the ‘secluded, sheltered, quieter’ pitch on the basis that on the day we arrived the campsite was rather windy and overrun by Duke of Edinburgh Award students on their expedition. As the days passed this turned out to be the ‘just next to the road, just above the river, surrounded by poisonous plants with yummy-looking pink flowers, exceedingly muddy and rather midgy’ pitch. On the plus side, it did have a play park right opposite and was well frequented by cute fluffy rabbits and cute fluffy ducklings (and their rather aggressive parents. And all their shit). At least Caitlin got a lot of practise at ‘What does the duck say?’ ‘Quack.’ Without us even having to say ‘What does the duck say?’

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‘Quack’

So, we arrived at the campsite on a Wednesday evening with our car (leased on the Motability scheme solely on the criterion of having the biggest boot of all cars) packed from floor to ceiling – determined this time to be prepared for every eventuality. Of course this meant that the first eventuality was having to unpack the entire boot to get the tent out, leaving all our medical gear, sleeping bags, blankets, pillows, hot water bottles, emergency cake, cuddly toys, etc., out in the drizzle-that-became-persistent-rain while we spent the usual two hours putting the tent up, pegging out all the guys, attempting to tighten all the guys, realising that all the guys were threaded in such a way that they couldn’t be tightened, arguing, re-threading all the guys, swearing, arguing, and re-pegging and tightening all the guys.

This years’ spectacle was enlivened by the fact that Caitlin is now mobile and exceedingly speedy. We put Jackie on red alert, chasing Caitlin around the campsite and shouting a warning if she got to close to any road, river, poisonous plant or live animal, on hearing of which one of us would let go our portion of the tent and leg it at full pelt to intercept her, while the tent crashed to the ground behind us.

As we were slowly heating up our spaghetti bolognaise over a nearly empty gas canister on the first evening I remarked that it was getting a bit midgy. ‘Don’t be silly,’ said Ric, as my skin started to come up in large red weals, ‘You don’t get midges in England. Keep the tent flaps open, it’s a lovely evening.’ The next day, after I dosed Jackie up with Piriton to counteract the itching, we mentioned to a lady in a shop that we were camping. ‘Ooh, really?’ she said, ‘That’s brave. How are you coping with the midges?’ Turns out midges are less respectful of national borders than one (husband) might think… The next evening, we kept the tent flaps shut.

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I don’t care about midges – I’ve got cake

After tea we gave Benjy and Caitlin a quick wipe with a wetwipe (Jackie was deemed old enough to cope with the excitement of the campsite shower, and returned more covered with grass than she started) and had just about got everyone settled in their sleeping bags, if not terribly sleepy given that it was still completely light outside, when the unmistakeable tinkle of an ice cream van was heard. So while I commenced Benjy’s night-time routine of feed and medications, Ric and Jackie set off up the hill and returned with three enormous 99’s plus a complimentary, slightly smaller one for Caitlin. By the time everyone had eaten/spilled their ice creams and brushed their teeth again – and it was still completely light outside (and inside) – there was no chance of anyone going to sleep any time soon. So we all lay down in the bedroom together for stories and milk and an ongoing game of musical roll-mats until it finally got dark and we crashed out, one by one.

 

Wooler is a delightful little town on the edge of the Cheviots with a remarkably good Italian restaurant hidden behind an abandoned gym hidden behind a pub, an old fire station converted into a depot for fish-and-chip vans, and an amazing number of butchers. Even more delightfully, we were unaware until we arrived that we were there for the weekend of the Glendale Festival: a showcase of marching bands, fancy-dressed children, a lady on a pennyfarthing, and some plastic duck races on the river (sadly, Postman Pat failed to turn up). We were also unaware, but reliably – and entirely correctly – informed by the lady at the fish-and-chip van hub, that ‘T’always rains on festival weekend.’ In fact, even the pictures in the festival brochure showed a distinct predominance of umbrellas…

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Entirely appropriate camping attire (attitude optional)

On Thursday we decided to explore our surroundings, so we wandered up, then down, then up again into Wooler (which, unsurprisingly given its beautiful location on the edge of the Cheviots, turns out to be surprisingly hilly). I say wandered; between Ric and myself we took it in turns to carry Caitlin, push Benjy in his chair and push Jackie on her bike, except on the downhill bits where it was more of a case of chasing Jackie on her bike shouting ‘stop when you get to a ROAD!’

By the time we got into town it was lunchtime so we walked up and down the high street a couple of times, deliberating, before returning to the first café we came across, which was spacious and friendly and had a spaghetti bolognaise special on the board. So Jackie had her third helping of spaghetti bolognaise in two days and Caitlin threw jacket potato around the room. After this brief interlude of peace Benjamin started vomiting copious amounts of bile out of his nostrils, so I leapt up and suctioned him with our very noisy portable hoover while Ric attempted to contain the girls and we both ignored the questions from the children at the table next to us. Eventually the café-owner came up to me. Here we go, I thought, she’s going to ask us to take our caravan of children and medical emergencies elsewhere. ‘Is there anything I can get you?’ She asked. ‘Do you need any water? I know what it’s like, I had a little boy like yours.’ I could have hugged her.

After lunch we managed a bit of shopping: a waterproof jacket and large amounts of wine, chocolate, wetwipes and Calpol. We only had to make one phone call to the hospital (to check if a small amount of overgranulation around Benjamin’s new feeding tube required us to do anything – it didn’t) and only had to discard one outfit in a bin due to a nappy explosion and the fact that I couldn’t face storing that amount of poo for the next three days before we could get home and wash it… so I count the day as a success.

Friday was also a relative triumph, spent as it was on the Heatherslaw Light Railway, ‘England’s most northerly narrow gauge railway.’ Once we had got over the usual confusion and convinced the driver that Benjamin was a wheelchair-user and not just a child in a pushchair, we were allowed to use one of the very accessible wheelchair carriages for the twenty-minute trundle to the village of Etal. There we had lunch in a nice tearoom which had the foresight to provide ride-on toys in the garden so that Jackie and Caitlin could terrorise the other guests. Benjamin and I gate-crashed an AA meeting in the village hall in order to manage another nappy explosion on the floor of the disabled toilet, and then there was time for a quick climb on a cannon before the train back.

 

‘It’s okay,’ said Ric cheerfully later that evening, ‘The forecast has improved: there’s a whole hour tomorrow when it’s not going to rain.’

‘Really?’ I said, ‘That sounds promising.’

‘Yes,’ he replied, ‘It’s going to hail.’

So on Saturday – along with the rest of the population enjoying the first day of the English school holidays – we cut our losses and drove to Alnick, had lunch in Sainsbury’s and tired the girls out in the swimming pool. Returning to the tent, we spent a happy evening trying to avoid walking on the squelchiest bits of the floor, and watching the drips gather on the inside of the flysheet (I really do think they were just condensation resulting from containing five people and a heap of wet swimming towels on a day with 100% humidity. Ric remains less than convinced.).

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Drying off in the Italian. It’s even warm enough to remove my jumper, look.

The rain continued throughout the night (Oh, the joys of taking a five-year-old to the loo on a wet night. Oh, the repeated refrain of ‘Don’t touch the walls!’) and throughout the packing up the next morning. We were reduced to strapping the children into the car and putting on Mr Tumble’s ‘Party’ CD (on the plus side, we didn’t have to listen to it ourselves) while we took the tent down and attempted to get it back into the bag it came out of. ‘I remember this: you fold it in thirds, then roll it.’ ‘Maybe it’s quarters?’ ‘Let’s try and shake some more water off it’ (tent still contains more than its weight in water, and now we are both soaked too). ‘It must be folded in half and then thirds.’ ‘Does it matter if we don’t get it in the bag anyway?’

As I emptied and repacked the boot for the final time, to get Benjamin’s buggy in and also to find space for the authentic Spanish bowl we purchased at one of the festival stalls as a souvenir of our time in Wooler, Ric and the girls emerged from a temporary tea room run by the WI, bearing emergency cake supplies for the journey home. ‘I don’t want to go home Mummy,’ said Jackie, stomping her wellies. ‘Quack,’ said Caitlin. So we must have done something right, right?

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Overcome with excitement

The way I look at it, things can only get better. I mean, that’s got to be about as bad as camping gets, hasn’t it? Non-stop rain, midges, twenty-hours of daylight making it nigh-on impossible to get the kids to sleep. A toddler just old enough to run into the road, fall into the river and eat the enticing-looking foxgloves but not old enough to understand the word ‘no’. We spent four days packing up, two hours pitching the tent, approximately three and a half days actually being on holiday, two more hours taking down the tent, and another couple of days unpacking and cleaning the mud off everything, not to mention the laundry, and the fact that the tent is, more than a week later, still lying in our garden ‘drying’, with the lawn slowly turning yellow beneath it… Don’t tell Ric I said this, but I think it might feel more worthwhile if we actually went for a fortnight next time… Roll on October (and God help the friends who are coming with us).

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*they may not

[To read the previous installment in this series, click here]