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.

How much is too much?

So far this week Benjamin has had visits from his physio, the community nurse to change his gastrostomy button, the disability social worker, and the visiting teacher for the visually impaired. I’ve taken him to the Sick Kids for a respiratory consultation, the GP for a flu vaccination, into Edinburgh for an early years sensory class and, for a bit of light relief, to Rhyme-time at the library. He’s been referred for an orthotic assessment, a tonsillectomy and adenoidectomy, and a possible nasopharyngeal tube placement. On his behalf I’ve made phone calls to the GP, neurology, to the doctor at the children’s hospice, and multiple calls to wheelchair services to chase up his overdue buggy.

On top of that (and the usual laundry, cooking, laundry, shopping, laundry, collecting prescriptions, changing nappies, laundry, feeding, laundry, laundry, etc…) I’ve enrolled Jackie for primary school, completed two freelance writing jobs, done a few hours admin for my ‘real’ job, made numerous cups of tea for the men who are demolishing (and hopefully rebuilding) our kitchen, and had a visit from my sister-in-law’s mother-in-law who happened to be passing.

A fairly typical week, and it’s not even Friday yet.

According to our social work assessment, I am “at risk of burnout.” I don’t buy that, I feel good when I’m busy busy busy). But is this the best way to bring up my children? The people I’m supposed to be nurturing? Constantly rushing from appointment to appointment? Jackie is incredibly patient, scoots her balance-bike to and from appointments, navigates her own way around YouTube during home visits, and looks forward to her afternoons at nursery for some proper fun. And Benjamin? To be truthful he was happiest snuggled up in my sister-in-law’s mother-in-law’s arms for a sleepy cuddle, safe from all the hassle for half an hour….

Just let us relax for a minute, mum!

Just let us relax for a minute, mum!

A day in the life

As a change from my standard, introspective musings, I thought I might try and describe a typical day in our household. Of course, there is no typical day. Some days we have appointments for Ben, some days we have playdates for Jackie; some days Ben is sleepy all day, some days he is hungry all day; some days the sun shines, some days it rains… anyway, here goes. Times are very approximate even though the way I’ve written them it looks like we run with military precision!

0400h. A child is crying. Is it one of mine? Which one is it? What time is it?

If Ben, fetch him from his cot, sit up in bed trying to get him to latch on, keeping an ear open in case his screaming wakes Jackie in the next room (although it hasn’t wakened Ric who’s lying right next to me). Once he’s latched on, attempt to lie both of us down and pull the duvet back over without knocking him off. He falls off. Repeat ad infinitum…

If Jackie, prepare for a half-hour “going to the toilet,” reading stories, checking “sore tummies,” etc. Try to remember where spare duvet is so I can stay sleep in her room until she falls back to sleep. Resort to Calpol (for her, not me).

0700h. An alarm is going off. How can this be; I’ve only been in bed five minutes? Anyway, whose is it?

If Ric’s, smugly roll over and cuddle up to whichever child/children has ended up in our bed while he crashes around in the dark getting ready for work. Once he’s left the room, get out and go round to his side of the bed which is less full of sleeping children than mine.

If mine, curse sleeping husband, crash around in dark getting dressed and waking grumpy children up in time to take Jackie to nursery.

If Ric’s but he’s already got up, curse him further and crash around trying to switch off b****y alarm before it wakes sleeping children.

0730h. Breakfast. Jackie eats two bowls of her favourite cereal (except the bits at the bottom that got too soggy in the milk) and one bowl of fruit and fibre (“Mummy cerewal”), picking out the nuts and demanding extra banana. She drinks some weird pineapple & coconut juice that someone once brought for a party. Ben eats foul-smelling commercial baby porridge mixed with foul-smelling high-calorie formula, plus a squirt of medication. He seems to like it though. I eat half a bowl of fruit and fibre (with extra nuts and no banana), while spoon-feeding Ben, mopping-up spilt pineapple/coconut juice, cleaning up sticky drips of medication, emptying the dishwasher, hanging-out the washing and listening to Radio 2.

0800h. Attempt to get everyone’s faces washed, teeth brushed, nappies changed, clothes on, hair brushed, second lot of medication taken (delete as applicable). Following the theory that if you let children make small choices they are more likely to do what you want in the bigger things, I ask Jackie whether she wants to get ready before or after Benjamin and myself. Invariably she says after. Invariably, once Benjy and I are ready, she will refuse to have her teeth brushed, clothes on, face washed or hair brushed. Chase her around the house for a while before cornering her in the play-tent in her bedroom.

0900h. After breastfeeding Benjy and watching a bit of Peppa Pig, activities for the day commence. Both children are squeezed into snowsuits and hats; Benjy is squeezed into his adapted buggy and secured with a complex combination of straps courtesy of both the buggy manufacturer and Lothian Wheelchair Services. Jackie is squeezed under the buggy handle onto the buggy-board, usually losing her hat in the process. Changing bag, shopping bag, letters to post, snacks, library books are squeezed into the bottom of the buggy. Monkey is usually dropped onto the pavement early in the trip and – if we notice – squeezed in with the luggage.

Arrive at the morning’s activity, unsqueeze every and everything off the buggy and out of their snowsuits, take part in activity, squeeze everyone back into their snowsuits, squeeze everything back onto the buggy and head off in a hurry to get to the weighing clinic/physio appointment/royal mail delivery office before it closes.

1100h. Jackie rampages around the house/clinic trying to get her fair share of attention while Benjy is being put through his paces. All of our health and education specialists are brilliant, actually, making time to chat to Jackie and involve her in what we are doing, whether that’s singing nursery rhymes with Benjy or copying his exercises with her teddy.

1230h. Lunch. Jackie and I usually have something on toast. Beans if she gets her way and now she’s out of nappies I don’t mind. Benjamin gets another squirt of medication and a portion of beige puree, turbocharged with double cream or cheese to fatten him up. When we have finished and cleaned all the toast and puree off the children, the mummy, the table, chairs, floor, walls and ceiling, Benjy will usually have a little down-time in his Be-Active box (a sort of miniature room furnished with lights, mirrors, jingling bells, dangling balls and anything else we decide to stimulate him with; he falls asleep within a few minutes), while Jackie and I potter around doing little bits of housework, listening to the Archers, sticking stickers on each others’ bottoms, jumping on the trampoline, and making any phone calls that need to be made that day about appointments, equipment, prescriptions, etc. (I leave it up to you to work out which of us does which).

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Lunch in the Davey household

1430h. Depending on the weather we either stay in and do painting/drawing/cutting/sticking/play-doh/glitter-spilling at the kitchen table, or take a trip to the shops, beach, play-park or library. Jackie usually asks for the library as she’s worked out that there’s a café there that sells cake… At some point in the afternoon I try to feed Ben a bottle of high-calorie formula, a process which takes anything from twenty minutes to two hours. Since it is a two-hand job Jackie spends the time doing jigsaws, watching Peppa Pig, drawing on the furniture or tipping all the toys out onto the floor; anything which doesn’t require hands-on assistance from me.

1700h. Jackie “helps” prepare dinner, standing on a chair at the work-surface. She’ll play with rice or lentils, mix things with a violence that sends most of the mixture over the floor, and eat cheese faster than I can grate it, but somehow we’ll get a meal on the table around the time Daddy gets home from work (probably because she usually gets bored and wanders off to watch CBeebies).

1800h. Ric arrives home to a cursory kiss from me, a tantrum from Jackie (because his arrival heralds the start of dinner and the end of Peppa Pig), and a beaming smile from Benjamin (at least one of us makes him feel welcome). We try to eat together as often as possible because it means less time cooking and washing-up. Unfortunately this means we get my predictable menus five days a week and Ric’s more exciting fare only at weekends.

1845h. Time for a quick game with Daddy (the most exciting being “going outside in the dark with a torch”) before “toys away time,” which is accompanied by a cup of milk and a biscuit (gin optional). When all the toys are in a heap at one end of the lounge (as opposed to multiple heaps all over the house) we all head upstairs and squeeze into our tiny bathroom. Once both kids are bathed, medicated and toothbrushed we all snuggle up in Jackie’s room for bedtime stories, which Daddy reads, partly because he’s better at doing funny voices and partly because I’m breastfeeding Benjamin and checking Facebook on my phone.

2000h. Once Jackie is settled and Benjy has finished his boobies, one of us gives him another bottle of high-calorie formula. This is both a pain and a pleasure because it means you’re stuck on the sofa for a couple of hours unable to do the ironing or take a shower, but it does give you an excuse to watch endless repeats of QI on Dave. I’m very grateful to Ric for doing more than his share of the bottles. Benjy usually dozes off towards the end and has to be woken up for his final dose of drugs. He’ll then want to breastfeed again, which I try to combine with getting some work done on the laptop.

2230h. When Benjy appears to be satiated we pop him into his cot and switch on his musical koala which elicits a final beautiful smile. Then we sit next to each other on the sofa (assuming Ben hasn’t puked on it earlier in the evening) and play with our phones in silence until one of us can be bothered to make move towards bed (only joking! We only do this for a bit then we usually grab a sneaky pudding together and I’ll watch a gardening programme while Ric reads a book about bicycle maintenance).

2300h. Next load of washing on (overnight both because it makes the National Grid easier to manage, according to my fascinating husband, and because if it doesn’t go out on the line at the crack of dawn it will never dry here in the winter), wineglasses and baby bottles washed, teeth brushed, baby monitors on, prayers for a quiet night said, and into bed ourselves. Night night.

Just the two of us

Some people say that your first child is the biggest shock to your lifestyle. Others say that one child is easy, she fits into your life; having two is the game-changer. Still others that two is manageable, three is when you don’t have enough hands. For me, when we first had Jackie, she took up every moment: I thought, “my goodness what on earth did I do all day before I had her?” Now, I wonder what I did all day when I had only her. On top of all the appointments, the phone calls, the paperwork, the prescriptions to collect, there are medicines to be administered, purees to puree, sheets to wash, sofas to wash, clothes to wash, nappies to wash, physiotherapy exercises to do, classes to go to, drawings to draw, stickers to stick, swings to swing on, books to read, towers to build, pirates to dress up as, and bubbles to blow.

But two days a week Jackie goes to nursery and it is just me and Benjamin. These are strange days. Quiet. Unscheduled (unless we have an appointment). Torn between trying to catch up with the ever-growing “to do list” and giving Benjy the attention he doesn’t get when there is a noisy toddler making constant demands. When he’s on good form, it seems most important to take advantage of that, to spend time playing with him and doing his exercises. On a bad day, it takes all day (and all night) just to feed him. The worst is when he just wants to sleep: then I’m too nervous to get on with anything; I would spend all day just watching him breathe.

Today is a hungry day. We have spent it on the sofa and at the kitchen table: breast-breast-bottle, breast-breast-bottle, trying to squeeze in a syringe of medicine here, a spoonful of puree there.

My husband says I always exaggerate. Okay, we haven’t spent all day feeding. I had a chat with a delivery man about the weather. I made a coffee. I phoned the geneticist to check where our clinic is. I even changed a lightbulb. And, as I sit here, he has finally dozed off on my lap, head lolling heavily on my arm, mouth open, catching flies, snoring irregularly. Like Jackie, he has their Daddy’s impractically short nose. Like her, he has my mouth, which I can trace back through my father to my grandmother and beyond. When he’s alert, when his eyes are bright, I can see in him my little brother, smiling out of photographs from sunny Spanish holidays.

8

Soon we shall go and collect Jackie from nursery. I’ll try to do it gently, but in the process of squeezing his limbs into a snowsuit he will wake, and our moment of perfect peace will be over. But it was enough.

Each day as it comes

On the whole I manage to avoid thinking about my own future, but it’s hard not to dream for your kids.

On Friday I took the baby to our third outpatient appointment of the week; my husband took our little girl swimming. The dietician was running an hour late (only to tell me to carry on as we have been doing), so instead of meeting up for a nice family lunch we had a rushed handover before hubby raced back to work and I dragged the two tired children home on the train. On Thursday, a sleep-system-fitting took longer than anticipated so I was late to collect my daughter from nursery – waiting in her bedraggled pirate costume she was the last, lonely one left. On Monday, I had no option but to drag her in to the city for the baby’s EEG. At least they had Peppa Pig DVDs.

Add to that the hours I’ve spent – just this week – phoning the geneticist, the paediatrician, the hydrotherapist, the wheelchair centre, the GP, getting him weighed, collecting prescriptions, when I should have been taking her to the playpark or building lego, and I wonder about the impact this is having on her life. I’ve little time to cook wholesome meals, let alone make nutritious snacks for in-between. No time to get the paints out or make her a proper costume for Halloween (hence the pound-shop pirate outfit). An early years’ specialist brought new toys for him – a “be-active” box and a light-up umbrella, while all she gets is an extra chocolate biscuit as a bribe not to touch them.

We knew from the start that this would affect everyone in the family – his grandparents, cousins, but, most of all, his sister. Does it make it worse or better that she’s too young to know anything else? Already she knows the route from the railway station to the Sick Kids Hospital. She knows exactly where the best stash of toys is kept at the GP’s surgery. She looks forward to the physio’s visit as one of the (meagre) highlights of her week. Her future holidays are mapped-out, not in foreign adventures but in wheelchair-friendly apartments accessible by estate car. Worst of all, she is no longer allowed to creep into our bed in the middle of the night. Partly because her wriggling keeps us awake, but also because there just wasn’t enough space if the baby needed to come in too. I miss her warm, soft, sleepy pre-dawn cuddles so much.

Of course, most of this is simply the effect of having more than one child. Those who choose to have a second know that the first will no longer be the centre of their universe; that she will have to learn to share, to be quiet while baby is sleeping, to occupy herself while he is feeding. But, usually that’s more-than-made-up-for by the gain of a new “toy”, later a playmate, confidante, partner in crime; she’ll never have that. Yet, far from being resentful, when he cries for Mummy’s attention she doesn’t compete, she tries to comfort him too. When she falls down and grazes a knee, what’s the first thing she wants? Not a kiss from mummy or a hug from daddy, but to hold her baby brother’s hand. When she’s tired, who does she want to snuggle up with? “My baby brother.”

She doesn’t notice that he’s different, that he should be rolling, kicking, sitting, burbling, interacting, she just takes him exactly as he comes and looks for the fun they can have together. And she’s absolutely right: the way to acceptance and comfort lies in taking each day – each moment – as it comes and seizing those opportunities that arise, not mourning the ones that slipped away. So what if somewhere in the multiverse I have a “normal” baby boy and my little girl has a normal(ish) life? Somewhere else, she’s a doted-on only child… somewhere else, neither of them exist at all.

Maybe she won’t walk the Great Wall of China or the Inca Trail with us … maybe she’ll do it by herself … maybe she couldn’t imagine anything more tedious! For now, a trip on the train, a visit to Sick Kids, friendly nurses to make a fuss of her and lunch in a café drinking lemonade like a grown-up is just a great day out. Long may it stay that way.

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