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.

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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.

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.”

What a difference a drug makes

I’ve often joked that Benjamin is my easiest child. At least, alongside a five-year-old who will burst into tears if you suggest she watches CBeebies instead of Youtube (or, God forbid, actually turn the TV off), and a one-year-old who will literally climb the furniture to get at anything she shouldn’t have.

He doesn’t answer back. He doesn’t scribble in Sharpie all over the sofa, or helpfully make a trail of wood shavings from the guinea-pigs’ hutch to the kitchen. In fact a lot of the time, day or night, he’s barely awake…

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‘Just resting my eyes’

Maybe he exhausts himself working against his dystonic muscles? Maybe he’s out of sync, and waking lots during the night? Maybe he’s not really sleeping, he’s just pretending so he doesn’t have to do anything he doesn’t want to? He certainly seems to have a stubborn streak (no idea where he gets that from). No matter how much you try to wake him up, he just won’t have it. His heart rate drops and his temperature with it. He’ll sleep for 48 hours, wake up for an afternoon, then doze off again before bed-time. Keeping him warm with blankets, hot water bottles, body heat or whacking the heating up to max helps a little. Nothing seems to stir him.

Well, change is in the air – or in a little packet of pills. One simple drug has made him into a different boy! Based on some slightly anomalous blood results during previous hospital admissions (par for the course with Benjamin, who has never had a normal result in his life), a couple of months ago we were referred to yet another team (on top of neurology, respiratory, gastrointestinal, ENT, haematology, immunology, and the enigmatic ‘medics’): endocrine. The hormone doctors. They did several more blood tests and – surprise surprise – most of Benjamin’s results came back ‘borderline.’

One of the tests that came back borderline was a marker of the functioning of his thyroid gland. The thyroid produces hormones that, among other things, increase the metabolic rate, speed up the heart, increase body temperature, and regulate sleep.

So, just as an experiment, Benjamin has been prescribed a small daily dose of one of these hormones – thyroxine. And – once we’d explored with the gastro team how exactly to give the tablet through a feeding tube (guess what, they’ve never had a child like Benjamin needing this drug before… ) – the results have been astounding! His heart rate is no longer clinically low. His temperature is practically normal (as we come into winter that’s a big worry off my mind). And he is awake! He now maintains a relatively regular sleep cycle – he sleeps at night, has a nap around the middle of the day, and a lot of the rest of the time he is awake!

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‘Morning everyone!’

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‘Just because I’m awake doesn’t mean I have to be happy about it’

Crucially, being awake means Benjamin is aware of what is going on around him. He can observe, interact, and learn. His latest report from preschool reads: “What a difference in Benjamin this term! Benjamin … enjoys play experiences and interactions with his peers … has been showing clear signs of engaging more with those around him. He appears much more alert and aware.” And, as they continue, “When well and alert, Benjamin can explore cause and effect. There is more body language and less passive behaviour.” I’m sure we all often wish we had a few more hours in the day. Benjamin has literally gained a few more hours every day, thanks to one tiny tablet, and with pretty minimal side effects (just don’t mention the nappies).

And being more awake means he’s (ever so slightly) more mobile, more able to clear his secretions, more able to keep his feed moving down in the right direction. This is one of a number of small changes – regular chest physio, prophylatic antibiotics, the switch to a G-J tube which has dramatically reduced his reflux and consequent aspiration of feed into his lungs – which have helped keep him out of hospital (touch wood) over the summer. Now we just have to see if they will be able to hold firm against winter’s onslaught of bugs (touch more wood… can I get some more wood from somewhere?).

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Thank goodness for Shane the log-man

He’s still my cuddly, snuggly boy, but now we also get to see his beautiful brown eyes! We often even get a wave and a smile. Yes, he’s still tired and grumpy by the end of the day (show me a preschooler that isn’t. Or preferably a five-year-old, an eighteen-month-old and a husband). The drug deemed ‘worth a try’ has turned out to be the drug that’s making all the difference, not just to Benjamin’s health, but to his development and enjoyment of life.

 

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