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