In the shadow of Storm Brian

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

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

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

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

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

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

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

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

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Nice weather for ducks

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

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

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

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

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Storm Brian has been delayed…

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

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

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

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Budding train drivers in Barter Books

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

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

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Stalking wabbits

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

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

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Really not into birdwatching

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

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

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

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When you love church but your child hates it

The Christian Church is far from perfect.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

That broke my heart.

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

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

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

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

My daughter will be happy. I am heartbroken.”

Brought up short

She pulls her knees right up to her tummy, froggy-style, then kicks them straight again, quickly, over and over, learning the strength in those chubby little thighs. She’ll be rolling over soon. His legs are sometimes floppy, sometimes tense and rigid. He doesn’t move them voluntarily; they will likely never bear his weight.

She brings her hands to her mouth, sucks on them, explores the fingers one by one. His hands never enter his own line of vision. He looks straight ahead; his hands remain by his side like a soldier standing to attention.

She waves her arms furiously to bat at a hanging toy. Delighted, she smiles and repeats the manoeuvre. His arms hang limply or tense suddenly, his only level of physical response. Occasionally he presses a switch placed immediately under his hand – I’m not sure if it is intentional or pure chance.

She gurgles, and when I gurgle back she smiles and repeats it again. We have a conversation. She cries when she needs something – distinguishable squawks for hunger and cries for other needs. He shrieks in delight. Or is it in pain? He whimpers when he’s too tired to cry.

Tickle her tummy and she grins, revealing big dimples in her cheeks. She’s so rewarding to play with, I just can’t help myself. I have to schedule his exercises in my diary to remember to do them. Often, he falls asleep during therapy.

She shakes her head vigorously, butts me like a hungry calf, then takes a great mouthful of breast: ‘Owp.’ I feed him, drip by drip, through a tube into his stomach.

Carrying her, she holds her head proudly, looking around with wide eyes, taking in the world. Carrying him, his head lolls against my shoulder.

She’s two and a half months. He’s two and a half years. The contrast brought me up short the day she was born. Before her, I had convinced myself that he was progressing, perhaps functioning at the level of a six-month-old. Now I realise, in many ways, he’s less able than a newborn.

She’s always busy. When she’s not feeding or sleeping, she wants to be playing. He’s happy to cuddle, relaxes into my arms, lays his soft, soft cheek against mine and his breathing slows.

wp-1462309270873.jpgShe’s a delight. He’s a treasure. I love them both with a fierce love, the love that just keeps on expanding the more children you have. I wanted this so much – the joyous experience of a ‘normal’ motherhood, that I felt I’d been cheated out of with Benjamin. But I didn’t want to be reminded of what I’d missed. She brings me up short.

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.

Hope and expectation

I think it’s only fair that before I go any further I explain properly why I’m writing this blog. So, I need to take you back to last November.

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We were 38 weeks into an uneventful pregnancy, excited about the prospect of meeting our second child. Then, at the end of a very long Friday, starting with a routine ultrasound at nine in the morning and ending with an MRI scan and a hushed consultation eight hours later, we were informed that our baby’s brain had not developed beyond that of a 20-week foetus. It was way too small and simple, there were big holes in the middle and smooth surfaces where there should be intricate folds. He may not breathe on his own, they said, would probably need to be fed through a tube, would almost certainly suffer frequent and severe seizures, and would be very unlikely ever to walk or talk. While we weren’t pushed towards a termination of the pregnancy, if we wanted one the papers could be signed there and then.

We went home to think it over. We returned to the consultant again and again; we spoke to friends, relatives, counsellors; we scoured the internet. A weekend developed into a week, as we considered the implications for our baby (his likely suffering, his lack of sensibility, his “quality of life”), for ourselves and for our 21-month old daughter: missing out on the life we had planned for her, all the exciting things we wanted her to do and places we wanted to show her, being dragged along to endless hospital appointments, being denied attention because we would be so busy caring for her brother, ultimately perhaps being responsible for her disabled sibling when we are too old to look after him.

This isn’t about proving the doctors wrong. I know it was their responsibility to prepare us for the worst. I know everyone wanted us to think carefully about what we were letting ourselves in for if we decided to keep the baby. But no one, no one, said “there’s a chance he might be happy.” “There’s a chance you might still be able to do the things you wanted, just with a little more planning.” “There’s a chance – just a chance – he might enrich your lives in ways you never imagined.”

Our son is now nearly nine months old. We kept him simply because it was the right thing to do, because it would have been hard to live with ourselves had we done anything else. Yet he has changed our lives – and us – for the better in so many ways. He is an adorable little boy. We haven’t yet missed out on anything we’d planned – we’ve been on trains, buses and family bike-rides, bought a big old house on the coast, and are flying to Tuscany this weekend. My husband and I are closer than ever. I have learned that life is not so much about principles; it’s about caring. His big sister loves him to bits, comforts him when he cries, plays with him whether he wants to or not. He’s the first thing she asks for when she wakes up in the morning. We have met some amazing people – mothers, fathers, grandparents, carers fighting for their children, fighting to make their world a better place, sharing everything they have – their money, their time, their knowledge, their experience, their energy, their love.

Yes, there are tough days. No one caring for any two children could truthfully say otherwise. Yes, we worry about the future – his and all of ours. Yes, it is early days yet; things may – probably will – get harder. But I firmly believe that he will continue to brighten our lives every day.

This blog grew out of my need to share that slim chance that for us turned into a reality. Perhaps to help inspire those fighting for the rights of disabled people, the unborn child, and the disabled unborn child. But mostly for those facing similar horrible decisions, to give the other side of the argument, to provide just one example of that other realm of possibilities outside the grim, medical, worst case scenario, so you can make a fully informed decision. You could say we got lucky: our son is a contented – even joyful – little boy and, aside from his disabilities, is healthy. But he is proof that – even when the official prognosis is grim – such luck, and hope, do exist.

Number three

I’ll admit it, I’m broody. I’m desperate for another baby. Another normal baby. I want it for myself – although I love him to bits – because I feel deprived of that wonderful experience of watching a child learn, grow, and develop day by day. And I want it for my little girl – although she loves him to bits – to get the playmate we intended her to have.

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But it’s not as simple as coming off the pill, getting a babysitter and cooking a romantic dinner for two. The chances are, his condition is the result of a recessive genetic defect in both my husband and I. This means, statistically, we have a one-in-four chance of any subsequent children having the same condition. How should we react to this prediction? It feels like “one-in-four: 25%: that’s not so bad. Twenty-five percent disabled = 75% normal.” But of course it’s not like that, it’s all or nothing. If the child is that one in four, it’s devastating; for the other three, it’s as if there was never any risk at all.

Then there are the un-quantifiable possibilities. What if it’s not a recessive genetic condition after all but a one-off mutation? Sometimes, I can convince myself that he has other characteristics indicative of a chance chromosomal abnormality – crooked, low-set ears, tapering fingers. We can’t rule out an infection during pregnancy. The geneticists are beavering away, but they may or may not be able to find the answer, and it may take one year, or two, or ten… in the meantime I’m not getting any younger.

When (if) the faulty gene is identified, we have multiple options, ranging from adoption, through IVF and pre-implantation diagnosis, to genetic testing during pregnancy. This makes the decision even more difficult than the simple “keep him or not” we were presented with when his condition was discovered. At present, in the absence of any genetic diagnosis, those options are narrowed to adoption, late term ultrasound scanning (and possible late term abortion), or simply taking any child as it comes. Which brings us back to that one-in-four. Are we willing to take the risk? Sometimes I think that having two disabled children couldn’t really be any harder than one. Sometimes I think it would be the hardest thing in the world. I’ll keep thinking. I hope we keep talking.

The slow smile

It’s an amazing moment when your baby smiles for the first time. It’s also amazing when they do that first, definite, personal smile, the one that says, “That’s my mum, I know her, I trust her and I love her.” With my first child, it happened after a few weeks. This time, it took seven months. At that moment I literally jumped for joy, all around the kitchen.

His smile wasn’t just slow to come, it was slow to unfold: once I’d entered his (limited) field of vision a couple of seconds passed as he registered me, then a couple more as the messages passed from brain to mouth and the muscle fibres interpreted the unfamiliar command. It was all the more special for the sheer mental and physical work that went into it.

It wasn’t a fluke, I tested him: hid behind his chair, came out, gave him time … and there it was again in all its beaming, toothless, slightly lopsided glory.

The beginning of a relationship. The twinkle of light at the end of the tunnel marked, on my darker days, “thankless life of servitude to child who will never even know who you are, much less love you, much less be able to tell you that they love you.”

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I’m the kind of person who wants things done yesterday. Don’t stop, don’t think, don’t wait, God help us don’t talk about it. Just get on with it. So patience, I think, is the first thing he is teaching me. I’m going to need bucket-loads of it in the years to come so it’s as well to start learning now. And what an incentive to learn! His smile is so huge, so beautiful, so genuine, so unconditional, that one is never enough. I can spend hours (on the days when the hyperactive toddler is at nursery) coaxing, cajoling one out.

It’s going to take me a while to get the hang of this. I’m not sure I’ll go the whole hog – out there you can subscribe to “slow food,” “slow schools,” “slow books,” “slow travel,” “slow money;” and it drives me nuts when my father-in-law practices his “slow driving.” But this slow smile has got me hooked.

Mummy Times Two