That was then and this is now

One crisp morning when Benjamin was in the Sick Kids I popped out to the corner shop for a sausage roll and a breath of fresh air (shocking, I know, but in my defence Benjamin was asleep and there are only so many egg sandwiches from the WRVS café one can eat). I passed a ground floor flat in one of those lovely Victorian sandstone tenements that characterise Edinburgh’s Marchmont area, with its big sash windows wide open. Music and smoke drifted out and I glimpsed a couple sitting there in their pyjamas, drinking coffee, I imagine easing themselves through the morning hangover. Bloody students. I thought. They’ll get a shock when they enter the real world. For a moment, a part of me wished I could go back to whiling away a weekday morning by a sunny window listening to obscure bands with a cigarette for breakfast.

I shouldn’t begrudge them. Fifteen years ago I was them. I’ve had my turn (all seven years of it) of drinking and dancing, smoking and shagging, of cheesy clubs and late-night lock-ins, stealing traffic cones and setting the world to rights; of trying to find someone, and trying to find myself.

Then, I was scooting around town on my little red motorbike, thinking I was the coolest girl in town.

Now, I’m chugging up and down the A1 in my big red MPV, strewn with used suction catheters, soggy biscuits and baby wipes.

Then, I was up all night climbing scaffolding and dancing to Steps (Oh, the shame).

Now, I’m up all night administering Calpol and cuddles (and occasionally dancing to Steps. Thanks, Radio 2).

Then, I was walking out of my room barefoot in the night and stepping on a slug.

Now, I walk out of my room barefoot in the night and step on a Lego brick.

Then, I was waking up fully clothed in somebody else’s bathtub.

Now, I wake up next to the four people that I love most in the world.

Then, I was researching the genetics of the plant kingdom in the big old musty-smelling library where you still had to complete a paper slip to get books up from the underground stacks.

Now, I am researching rare genetic disorders using Google (and grateful that I did take in something of my genetics courses along the way).

Then, I was slipping and sliding into anorexia because I thought looking skinny and fragile would make people love me.

Now, I am proud of the fact that my body has carried, birthed and fed three babies and that my tummy and boobs are evidence of that.

Then, I was drinking strong coffee just to get through the day until I could have a beer.

Actually, I’m still drinking strong coffee just to get through the day until I can have a beer…

Then, I was campaigning against tuition fees because all my friends were going.

Now, I am campaigning for disabled rights and against our impacts on the environment, because I want my children to live in a better world than this one.

Many things have changed; some things haven’t. I’m still me; still the sum of those experiences and all the things I’ve experienced before and after. I’m still learning, just now I’m learning on the job. I like to think each of those things has prepared me in some way for the most important role I’ll ever have, as Jackie, Benjamin and Caitlin’s mum. There’s still nothing wrong with having a few glasses of wine and putting the world to rights every now and then; it’s even better if you can get up the next morning and do a tiny thing that does make it better, for them.

Then, I was desperately trying to find my place in the world.

Now, I’ve found my place and it’s right here.

 

 

**this post was inspired by the SWAN UK April 2017 Instagram challenge (Day 5 – My morning routine), which culminates on #undiagnosedchildrensday #UCD17. I hope to write at least one post a week during April to link in with the challenge and to raise awareness of the great work SWAN UK does to support the families of children with ‘Syndromes without a name (SWANs)’. If you know a family with an undiagnosed child, please point them in this direction (https://www.undiagnosed.org.uk/). To donate to SWAN UK you can text SWAN11 £3 (or any amount up to £10) to 70070. Thank you**

What women want

Or at least, what this woman thinks she wants…

As I write this, it’s International Women’s Day. People around the world are tweeting about great women, inspiring women, beautiful women, high-flying women, much-loved women. We’re valuing women and their achievements, as we should be.

But some women don’t feel so high-achieving. The online parenting forums I subscribe to are filled with exhausted, overwhelmed women asking for advice, asking for reassurance, begging for someone to tell them they’re doing it right, they’re doing a good job, that what they’re doing is worthwhile and it is valued.

I remember one day, a few months ago (I remember it because it felt so different, so special), I went into work for a meeting. I wore a blouse. I wore lipstick. (I drew the line at heels). I carried a handbag. I discussed the rate of deforestation in China, talked about going to a conference. My work was appraised and my ideas sought. I came out with a progress report and a list of targets for the next six months. I felt my brain waking up. I felt alive and inspired, and I felt valued.

Why don’t we value mothers the same way? Why don’t we value ourselves the same way?

The thing with parenting is, people only seem to notice when you get it wrong: I will hear it from nursery if my daughter tries to cut another little girl’s pigtails off; from my daughter if her favourite jumper is not laundered, dried and back on the shelf within two hours of being left on the bathroom floor; from my husband if I shout at the children; from myself if I don’t feel I’ve given the kids enough stimulation, interaction or direction today. But if the kids are fed and (mostly) clothed and (partly) clean and (sometimes) sleeping and (in one way or another) entertained, nobody really notices. I don’t have a manual, I never get a progress report and the targets for one day are usually the same as the next: keep them alive, and stop them from killing anyone else.

The thing with parenting is, the job is never done. No-one ever says, ‘Well done, you’ve finished these kids now, you did a great job. Now move on to the next project.’ Or, ‘You got a B for that one, why not try for an A next time?’ In a results-orientated world, parenting is the only job that doesn’t even get to the examination.

And with no results to chalk up, sometimes it seems all you’ve got to show for your efforts is felt-tip pen (or worse, Sharpie) on your face and a hole in your jeans from kneeling doing nappies all day. Whether you’re a stay-at-home mum, a working mum, a work-at-home mum; whether your partner (if you have one) works hard all day, sits around in his pants playing Xbox all day, cares for the children all day; the chances are you’ve made sacrifices he (in my case it’s a he) isn’t even aware of.

I’ve lost my waist, I’ve gained some wrinkles, my hair is falling out, bits of my bowel are still threatening to escape out of my arse. I don’t have time to shave my legs or paint my toenails. I haven’t had my hair cut for over a year. If I put on makeup it’s usually in the dark. I can’t wear my favourite jumper or my favourite bra in case the youngest wants a snack. I sleep with one arm around the baby and the other braced to stop myself falling out of my six inches of bed. I had a black eye for a week from a Tommy Tippee cup. My schedule is entirely decided by a tyrannical five-year old, a boob-hungry one-year-old, and the regular and emergency medical needs of a complex three-year-old. I have little time and even less time off; but worse I have no autonomy, and zero control.

Yes, we would like you to do your bit. No, we don’t want you to ‘help’. Helping implies that this is all our job, that you’re just picking up the slack for us. We don’t want you to ask ‘what can I do?’ because that relies upon us to take responsibility for the organisation which, frankly, is one of the most mentally-exhausting things. We want you to know which night the bin goes out and just do it. We want you to notice that the house is a tip and tidy it. We want you to remember – just for a change – who needs a packed lunch tomorrow and what time parents’ evening is and whether it’s a nappy wash or a clothes wash today.

But more than that, we want to be valued. We don’t necessarily want flowers and chocolates (although they would be nice); we just want to be recognised for what we do. We don’t necessarily want sexy underwear and a massage (although they would be nice); we just want you to remember and remind us who we were, who we are, underneath the dribble and the vomit and the mountain of paperwork and the mountains of laundry.

I don’t have the answer. Many partners do all this already and it still isn’t working. What can I say? Women are complicated creatures. This isn’t something that can be changed by one husband buying his wife flowers. In fact, our partners probably value us more than anyone; certainly more than we value ourselves as we run around in circles trying to get yogurt off our backsides and keep the baby from getting into the guinea-pig hutch.

Maybe if the world were a little less results-orientated, motherhood wouldn’t seem like such a raw deal. Maybe if we all spent less time thinking ‘what did I achieve today?’ and more time asking ‘what can I do that would make someone happy right now?’ we might, ourselves, be happier women. Because chances are, if you’re a mum, you’re already doing it.

‘Tell me, what have you achieved in this quarter Mrs Davey?’

The best of both worlds

It’s a common complaint among carers of children with complex needs: I spend so much time being a nurse, being a therapist, I sometimes don’t get a chance just to be a parent. I don’t want only to interact with him through a feeding tube, a syringe, and a set of physio exercises in a pair of uncomfortable boots; I want to play with him, cuddle him, enjoy him like my other children, take his boots off, rub his feet and stroke his hair.

So much of our day is taken up with Benjamin’s immediate medical needs – chest physio, suctioning, administering medications, giving tube feeds; not to mention his personal care – nappy changing, dressing, bathing – that sometimes the benefits of longer-term therapy seem so far off, so intangible, particularly for a life-limited child, that it gets pushed to the end of each day and then forgotten.

Don’t get me wrong. I appreciate – so much – the guidance of our physio, speech and language therapist, community nurses and visiting teachers. I am so grateful to be able to keep Benjamin at home rather than in hospital. And I do want him to be the best he can be, now and in the future, of course I do. But sometimes I just want to be his mum.

What if there was a way to do both?

A way to do therapy that had immediate impacts as well as long-term benefits? A way that integrated therapy into everyday life? A way that combined therapy with play, and with communication? A way in which ugly equipment has its place, but sitting together on the sofa can be just as useful? A way in which tiny changes can make a big difference?

We’ve just spent six gruelling weeks travelling back and forth through the roadworks on the M8 to Glasgow’s Bobath Cerebral Palsy Centre, to take part in their Big Lottery-funded, Right Start Programme for children aged 2-5.

We did learn exercises we can do with Benjamin on a ball, on a bench, in a stander, when we want to and he wants to and we have time. But we also learned how to warm him up before exercising, so that he gets the maximum benefit with the minimum effort. We learned how to challenge his head control when picking him up, how to raise his awareness of his own hands whilst putting his jumper on, how to stretch out his hamstrings while changing his nappy, how to relax his fists while washing his hands. In short, how to be a mum and a therapist at the same time, without even thinking about it.

We learned how to use our own bodies to support him in different positions – how boobs and a belly can be more supportive than a chair and more responsive than a ‘memoryfoam’ mattress. How to do ‘peekaboo’ or to pretend we’re going to let him fall then catch him. How to play, or sit together, or even watch TV together, without feeling guilty that we’re wasting therapy time.

We learned how small changes can make an immediate difference. Simply checking his posture, rolling his shoulders back and opening out his chest when he’s seated in his chair or in his buggy can set off a chain of muscular adjustmentsthat help him to hold his head up better, to control his eye movements, and ultimately to interact more meaningfully with those around him (if, that is, he can see past his fringe). Immediate rewards that provide the impetus to keep going even when the long term goals seem so distant.

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It’s not rocket science. In fact I’m sure most of the things we learned could have been taught by our NHS physiotherapist or speech-and-language therapist. But the six weeks of intensive contact time we spent at Bobath would take them maybe a year to achieve with their overfilled, underfunded schedules, and it’s harder to make progress without momentum.

In actual fact, I don’t think we’ve even scratched the surface of what Bobath has taught us. In the thick of an intensive course, with three hours’ driving for each appointment, on top of two days’ nursery a week and the usual hospital appointments and home visits, none of us – least of all Benjamin – really had the energy to get home and practice much more than a few stretches before bed. But armed with a DVD and a personalised instruction manual (complete with comedy photos of Benjamin and I in all sorts of positions) I hope over the weeks and months to come we’ll be able to build on the improvements we’ve already seen in his head control and visual focus, his more relaxed hands and body awareness.

I can’t thank the team at Bobath Scotland enough, for putting up with me and my army of grubby children, for supplying a good cup of coffee each morning, for treating Benjamin with respect and for believing in his potential, and for encouraging me to cut his hair.

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‘If only there was always a nice lady to hold my hair out of the way…’


The Bobath Scotland Cerebral Palsy Centre is based in Glasgow. Their Right Start Project is funded for five years by the Big Lottery Fund. But they rely on fundraising for 85% of their income in order to keep doing the work they are doing across Scotland, from the Highlands to the Islands, supporting the 15,000 people in the country with cerebral palsy and related conditions. If you’d like to support their work you can donate £5 by texting HIGH05 £5 to 70070, or you can find details of how to donate at www.bobathscotland.org.uk/donate.

Reference point

20170213_210941.jpgI popped a little note into my big daughter’s lunchbox for today, Valentine’s Day. Nothing elaborate; just to say I love her. I didn’t bother for my youngest daughter – she can’t read yet, and to be honest she’d probably just eat it. And Benjy, well Benjy will be with me all day anyway. I hope he knows that I love him. I think he knows.

It got me thinking that, at this moment in time, nobody loves my children more than I do. Their Daddy loves them just as much, but nobody loves them more than us. How could they? We – in our love for them and our love for each other – are their reference point for love. The yardstick against which every future love will be measured.

Their reference point for love. Just as my parents were for me. It was hard for me to understand, until I became a mum myself, just how much my mum must have loved me. Sitting up through the night when Jackie had chickenpox, helplessly wishing I could take away her pain, I remembered my mum doing the same with me – holding me, rocking, imploring me to squeeze her hands as hard as I could, as if I could transfer the pain on to her. My reference point for love.

I’m secure in my marriage because I know my husband loves me that much too. He’s already seen me through health and sickness, through living on opposite sides of the world, through typhoid fever and a motorbike crash, through life-and-death decisions and through childbirth and all that has followed; he loved me before and after and because and despite of all that. Some day my girls will grow up and, I hope, find someone who loves them as much as that, as much as I do. Who meets their reference point for love. But Benjy? He’ll never find someone else to love him like that.

Jackie says ‘I love you Mummy’ a lot. When she’s been naughty. When she’s tired and snuggly. When I’m not paying her enough attention. Caitlin’s just starting to get cuddly, to hold up her chubby little arms to be picked up, to snuggle in to your shoulder with her curly head. But Benjy? He’ll never say ‘I love you.’

During a hospital stay last year one of our favourite doctors observed that Benjamin smiled every time I spoke. ‘He knows mummy’s voice,’ she said. Another doctor commented that ‘his heart rate goes up when you go near’. I can’t decide if that’s the least romantic thing I’ve ever heard, or the most. To be reliant upon a number on a monitor to tell me that my son loves me? Or to be fortunate enough to have him plugged into a machine that actually tells me his heart leaps when I walk into the room?

I hope he knows that I love him too. That my heart, too, leaps when I am with him. That nobody will ever love him more than I do. That whether he knows it or not, I will always be his reference point for love, and he, in his unconditional way, will be mine.

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Skills for my CV (not)

A few weeks ago my eldest starred in her first ballet show. It was an incredibly serious affair: no nail varnish, no dark coloured pants, hair must be secured in a proper bun, held in place with pins (not bobby pins) and a net to match the colour of the hair, all hair to be held back off the face with gel, no hairbands, clips, … Phew.

Thank goodness there was a rehearsal. Thank goodness for a YouTube video showing how to make a figure of eight out of a hairnet. Thank goodness I didn’t let my little girl down! I might not have passed with distinction, but I was happy with a grudging ‘that’ll do’ from the ballet teacher. Another skill to add to my repertoire, another skill that before I became a mummy I never imagined I’d have to master.

'Could do better...'

‘Could do better…’

In fact, after I passed my PhD and took my driving test I thought that would be it. I thought I’d never to take a test again. I had everything I needed on my CV.

And now, here I am again, hands shaking, while a community nurse ten years younger than me ticks off my competence in changing a gastrostomy button. If only she knew I had to use a car key last time… I am now trained and signed off to deliver gastrostomy feeds and medicines, to change and care for a mic-key button, to deliver oral and naso-pharyngeal suctioning.

I am trained to give physio and specialist chest physio, to use a PEP mask and an inhaler and administer a hypertonic saline nebuliser, to make up antibiotics, to give appropriate sensory and visual stimulation to aid Benjamin’s learning. I can work a sats monitor, a bath seat, a profiling bed, set up a sleep system and adjust a special needs buggy. I am learning on the job how to manually handle a 15 kg (and growing) weight, how to negotiate deals, how to manage agency carers, and how to make crucial medical decisions, sometimes every day.

Every new parent has to develop a whole new set of skills that would never make it on to anyone’s CV. Cutting tiny fingernails. Changing a dirty nappy with half a hand. Developing recipes that everyone will like and prevent scurvy. Finding the missing teacup from the Sylvanian family’s picnic before all hell breaks loose. Intercepting pieces of bread and empty yogurt pots as they are hurled across the kitchen. Often, simply getting everyone to where they have to be in the right clothes and with the right equipment and then getting back on time to pick them up again feels like some sort of game-show challenge.

Yet parenting a child with complex needs takes the job description up a whole new level. Special needs parents are, as the charity WellChild puts it, ‘#notanurse_but’. I don’t yet have to administer home IV’s or maintain a tracheostomy, but if I have to in the future, I’m ready. The more skilled I can become, the more we might be able to keep Benjamin at home and the less time he might have to spend in hospital. Every new skill I can learn, even if it goes nowhere near my CV, could make Benjamin’s life more comfortable and keep our family together that little bit longer. And frankly, nothing I’ve yet had to learn has been harder than putting a ballet bun on a four-year-old.

How come you never get my hair right then mum?

How come you never get my hair right then mum? I’m not auditioning for Jedward…

It was the best of times, it was the worst of times

(Charles Dickens; A Tale of Two Cities)

The experiences of our little household pale into insignificance against the backdrop of political turmoil, cultural change, and sad losses amongst our beloved SWAN community, that characterised so much of 2016. Nonetheless, we had our own ups and downs…

Our year started on a knife edge as we awaited the final scan of our unborn baby three weeks before its due date. A year on, I simply cannot imagine life without the chubby little bundle of laughter, energy and character that is our Caitlin. Her middle name, Faith, reflects the gamble we took and the faith we had that it would work out, but I had absolutely no idea just how well it would work out; what an incredible difference she would make to our family, how happy she would make us and how she would complete us.

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Do not be fooled by the angelic appearance

Aside from Caitlin’s birth, I recall little from the first few months of the year. They have become overshadowed in my memory by the period from May onwards, during which Benjamin has been repeatedly, seriously, ill. Over that time it has been rare to have more than two weeks at home between hospitalisations, operations, intubations; week after week in high dependency and many, many doctors scratching their heads. During this time family life has inevitably suffered. We’ve been living long-term on a short-term emergency footing, planning day to day, shifting the girls from pillar to post, every one of us missing the others, staggering from one admission to the next with barely time to breathe. The doctors now say this will likely continue for years.

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But while Benjy’s physical health may remain precarious, the impact on our family doesn’t have to continue. Positives have emerged from the situation. For a start, we’ve really discovered who our friends are, just how numerous and how generous they are. We’ve fallen firmly on our feet in the community we chose to live in and we have felt included and loved within it this year.

Our two girls have proven to be a huge support, to ourselves and to each other, during the interminable hospital stays. Tolerant, patient and flexible, although often separated during the day their relationship has come into its own whenever they are together. This year would have been so tough on either of them had they been alone. Together, they have borne it far better than I, and forged the foundations of a strong, loving relationship (and comedy partnership) that I hope will last long into adulthood.

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Plotting something

For myself, the initial despair that we might be facing more years like 2016 pushed me to accept that we should ask for more formal help; that we should make a plan. With much help and encouragement from my social worker aunt, from the charity Kindred, from social services, Rachel House Children’s Hospice, and others, I have built a package of practical, medical, emotional and financial support that gives me hope that we enter 2017 more resilient, able to move on from our emergency footing to live life despite, during and through Benjamin’s hospital admissions.

We are now better placed to support Benjamin as much as we can from home: with prophylactic antibiotics, a nebuliser, suction machine, ‘sats’ monitor, weekly specialist physio visits and emergency feeding regime. The down side, of course, is that our home is more like a hospital and my role more of a nurse, but that’s a small price to pay for less time actually spent in hospital and torn between my children.

With support from social services, Caitlin will be able to attend nursery even though I am unable to go back to work to pay for it (and I’m more than fortunate that my employers continue to be incredibly flexible and understanding about this). It’s a little earlier than I would have liked her to start, but will give her a consistent place to go when I’m in the hospital with Benjamin and – even better – the same consistent place as Jackie. Being the outgoing little soul that she is, and being so used to being cared for by strangers, she settled in without a backward glance at Mummy. Like Jackie, she’s already having to grow up too quickly; it’s bittersweet but I am so proud of her.

Proud of me? But I'm stuck under a table...

Proud of me? But I’m stuck under a table…

And, when he’s well enough, I’ve also thrashed out a plan with Benjamin’s teachers and headteachers, council safety and transport officers, and his incredibly competent and lovely school nurse, to enable him to attend nursery too! It’s going to take some dedication from us all, but eventually he should be able to transition to the two full days he’s entitled to at his age. The way his eyes light up when he enters his classroom shows that this is absolutely the right thing to do, and the work we will put in to get him there is nothing compared to how hard he works to hold his head up, to move his eyes, to switch his switches, when he is there. Benjamin is the inspiration that keeps us all moving forward.

Other things have fallen into place to make life seem easier as we move into 2017. We have a car. We even have a parking space for it! Benjamin has qualified for monthly respite breaks from NHS Lothian Children’s Services. He’ll receive his vaccination boosters again and he’ll be tested and retested as doctors continue to seek answers to his problems. He’s been accepted for therapy at the renowned Bobath Cerebral Palsy Centre in Glasgow. 2017 will be nothing if not busy!

We know not all of this will go to plan. Benjamin will, without doubt, spend extended periods in hospital. Plans will be put back, put on hold. Some days it will take all my efforts to keep him well enough to stay home. Some days I’ll be successful: already over the past few weeks he’s had infections that I’m sure would previously have seen him in hospital, and the feeling of achievement when he comes through one is almost enough to make up for the lack of sleep! Some days I’ll get things wrong. Some days he’ll just be too sick, and I have to responsible enough to make that call. But being in hospital is no longer the spectre it may seem from outside. Being ventilated is not to be feared, it’s just the level of support he needs at that particular time. All the time we are learning, our normal is changing, and through all that we can cope and we can thrive.

Thus our big lesson to take into this New Year is to manage our expectations for it. To hope for the best and prepare for the worst but never to fear it. I don’t mean this to sound negative: if we can prepare for the times of sickness we’ll be ready to take full advantage of when Benjy’s well. So while I know I’m not going to get a foreign holiday – or even get to London – for a couple of years, if Benjamin is fit and the weather is fine we can damn well pack the tent into our big new car and have just as much of a break a few miles down the road. We may not be able to commit to a dog, but our new guinea pigs will be showered with love and (maybe rather too rough) affection.

Just before Christmas I received a phone call from our new paediatrician, not with an appointment, a cancellation or a result, but just to check how we were doing and to tell us that everyone in the Sick Kids was thinking of Benjamin and wishing him well. I can truly believe that, because Benjamin brings out the best in people. In what could have been, if not the worst of times certainly a difficult year for us, our children, friends and family, the professionals that work with us and all those who helped us, have made it one of the best. With the festivities falling nearly three weeks after his last release from hospital I knew we were on borrowed time, but spending Christmas morning opening stockings in bed with all three of my children is something I will always treasure, and a memory that will carry me through whatever the next year may bring. With much love to all our readers for 2017.

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A world without…

A week ago I – along with at least 50% of people on my Twitter feed, it appears – watched Sally Phillips’ emotive documentary A World Without Downs?, exploring the possible outcomes of a new, non-invasive prenatal test (NIPT) for Downs Syndrome. The test allows risk-free, early prenatal diagnosis of almost 100% of Downs Syndrome babies. It is sadly no surprise that the vast majority of parents, who discover their unborn baby has Downs Syndrome, choose to abort. In countries where NIPT is already routine, that means 100% of Downs babies are ‘screened out.’ When the NIPT is introduced on the NHS, Downs could be eradicated in the UK as effectively as smallpox. A world without Downs is a very real possibility.

Although I have little experience of Downs Syndrome, the programme stirred up a host of not-so-deeply buried emotions. Because we also, thanks to non-invasive testing, were given the knowledge that our child, in utero, would be severely disabled. We were given the choice to ‘screen him out.’

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In our case, despite the prognosis that Benjamin would be much more severely disabled than most of the Downs community, we chose to continue the pregnancy. It was an unusual choice: a choice that at least some of the people Phillips so bravely interviewed would consider anathema. Yet, almost three years down the line, having out-survived the dire predictions made for him, I remain convinced that our choice was the right one, for Benjamin, for us, and for everyone.

In this respect, our experience mirrors Phillips’: the quality of Benjamin’s life has, so far, exceeded the prognosis; for Phillips the lived experience of Downs does not match the medical risks associated with having an extra copy of chromosome 21. Therefore, she argues, the medical facts alone should not be used to justify, promote or allow the termination of Downs pregnancies; the truth of the lives of the Downs community – their achievements, their integration, their quality of life – must also be considered.

However, while this argument may hold for her cherry-picked examples of high-achieving, articulate, much-loved people with Downs Syndrome, in other cases the worst predicted scenario may in fact come true (see, for example, this headline-hitting story from a couple of years ago). Nor may Phillips’ experience apply to the host of other, less cuddly, genetic conditions that we’ll be able to screen for over the next few years: conditions whose bearers may be less able, less sociable, less comfortable, in more pain, and requiring greater levels of intervention. This is not just about Downs! Downs is the thin end of the wedge, yes, but we need a much stronger, less subjective argument to avoid slipping faster and faster towards the eugenics of the thick end. I didn’t choose to keep Benjamin because I thought the doctors were wrong; I chose to keep him because I loved him even if they were right.

The fact is, as Phillips makes clear, choice is not always all it’s cracked up to be. In fact, choice without information is no choice at all. Parents are called upon to make a life or death choice, yet they are sometimes the least informed party. They have no medical background, no knowledge of what it is like to parent a disabled child in todays’ society, or of what it is like to be disabled. Caught in the moment, they cannot get their heads around hospices and trust funds, community healthcare and special schools, motability and carer’s allowance. They rely upon the medical profession, as their only point of contact, to provide all their information. With the clock ticking towards full term, they may be rushed into a decision before they can research it from all angles. A decision that – either way – they will live with for the rest of their lives.

Choice without information is no choice at all, says Phillips. But neither is choice without support. Because choice almost inevitably leads to hindsight, leads to ‘what if?,’ leads to guilt. The climate in which we made our choice left us (me) with a huge legacy of guilt.  Because although it was a joint choice – and to my dear husband I am hugely grateful that we made it together and bear joint responsibility – at the same time it was my choice. I was the one who had borne Benjamin for eight and a half months. I was the only one who knew him. It would be my body to birth him, dead or alive; my signature on the consent forms; my choice to condemn the rest of my family to a life they hadn’t planned or chosen.

I feel the guilt every time my husband has to take time off work to come to yet another multidisciplinary consultation. I feel guilty every time Jackie has to spend the afternoon colouring in, in A&E. I feel guilty for the weeks spent juggling home life with hospital. I feel guilty every time Benjamin is in pain. I feel guilty when we spend £750 on a new base for his wheelchair that could have gone on a new carpet for Jackie’s room. I feel guilty when we can’t climb a mountain together. I feel guilty when I spend the afternoon making purees for Benjamin instead of cupcakes with Jackie. I feel guilty when Caitlin needs a cuddle but Benjamin needs my immediate care.

Of course ‘mummy guilt’ or as Google insists on rephrasing it for me, ‘mommy guilt’ is far from my unique prerogative. Guilt for working, guilt for not working, guilt for letting them cry, guilt for spoiling them, guilt for using disposable nappies, guilt for formula-feeding, guilt for feeding them junk, letting them watch too much TV, spending too much time on your phone, not noticing when they smack another child in the head, not noticing when they get smacked in the head… But this guilt runs deeper. Whichever path they choose, parents like us make a life-or-death decision: to end a life, or to forever change the lives of those around them.

The brilliant, honest and thoughtful blogger Orange this way admitted in a post earlier this year that ‘I would have mistakenly and quite offensively believed that life with a disabled child would be tragic and terrifying, joyless, isolating and punishing, and that the hardships would far outweigh love.’ When Benjamin’s disabilities came to light, I felt the same, and those feelings were reiterated by the few people around us with whom we shared that nightmarish news. I felt we had to choose between a life of freedom without Benjamin or a life of hardship with him. Hardship not just for the mother, but the father, siblings and extended family too. In my journey with Benjamin I have come to know several parents who faced a similar choice at 12, 20, 30+ weeks pregnant. Some decided to terminate, some to continue. Our paths since that choice may have diverged but one thing we all share: the weight of guilt.

Don’t get me wrong. I don’t think we made the wrong decision, not at all. I don’t wish we had chosen to abort Benjamin. I don’t wish he had never been born or even never conceived. He is my Benjamin, my brave, beautiful, brown-eyed boy, and I love him with all my heart. But I do wish, with that same heart, that we hadn’t faced that choice.

I don’t blame the doctors, who were only doing their job, giving us the information they had and telling us the rights that we had. I don’t blame the midwife who sent me for that fateful 38-week scan. But I wish we hadn’t faced that choice.

The choice, the decision, and the guilt, threatened to drive a wedge through the heart of our family. Between myself and my husband; myself and my daughters, who will live a very different life to the one we planned for them; myself and the family members who weighed in with (well-meaning) advice and opinion. I wish we hadn’t faced that choice. And NIPT places such a choice in the hands of hundreds more parents, each year, in the UK alone.

I am not asking that we reverse or ignore the amazing advances that scientists and medics have worked so hard for. I am not arguing against screening. In the right hands, prenatal screening can provide valuable information. For Benjamin, it meant that the medical team were thoroughly prepared for his arrival and ready to hit the ground running. Not for us the months of fighting that so many SN parents face, to be taken seriously, and to get much needed treatment and support. From the very start we had nurses, paediatricians, dieticians, physiotherapists, palliative care specialists, neurologists, geneticists, and more, queuing up to see Benjamin and to help him be the best that he can be.

What I am asking for is a society that makes the choice less punishing; a society that doesn’t place parents between a rock and a hard place; that doesn’t make them choose between life for their unborn child and life chances for their other children. I’m asking for a society where life becomes the easy and obvious choice: a society of fairness, accessibility and tolerance.

And until we get that society, I am begging for support. Support to parents at the time of screening – provided not just by doctors but counsellors, peer supporters, palliative care specialists, social workers, family and friends. Non-judgemental, non-directed, support. Space to ask questions and have them answered; help with work, cooking, housework and childcare while they grapple with their choice. Reassurance that the choice they will make is the right one for them, and that no-one needs to feel guilty. And support afterwards, to heal the psychological scars that will inevitably left by such a choice, by simply being a normal, lay person thrown into making a life and death decision. One good place to start would be with more Diana Children’s Nurses, who were such a support to us while I was pregnant with Caitlin. If only they had been there during my pregnancy with Benjamin too.

If you haven’t already, I urge you to watch A World Without Downs? It raises important questions and starts an important debate. But it doesn’t go far enough. Pitting the ‘Downs community’ against – well, against whom? Scientists? Politicians? Doctors? Mothers? – in this way may in fact make it more acceptable to terminate pregnancies with worse prognoses. The fact is we are all a community, and all part of a continuum of humanity, all able and disabled in different ways. If we do begin to provide fuller information about life with genetic conditions, as Phillips hopes, are we then more justified in screening out the worst? And who chooses what constitutes ‘the worst’? Where do we, should we, draw the line between someone who is a valuable member of society and someone who is a drain on it? Who chooses who has a right to life? Should we outlaw the choice itself? Or should we build a society where life becomes the easier choice to make? And who will be there to pick up the pieces of those on whom that choice is placed, whatever they decide?