Just because it’s difficult, doesn’t make it right

A few of days ago an article popped up on my timeline. It was entitled How working in an abortion clinic changed my mind about terminations, and was written by a student midwife, Lucy Kelly. A bit ‘clickbaity,’ but I was baited and I clicked.

It is a beautifully written, convincing, strongly worded essay. The direction in which the author changed her mind (spoiler alert) was towards terminations. She wasn’t put off by what she bravely and compassionately witnessed, she was inspired by the fortitude of the women she met in that clinic. And some of what she wrote, yes, I do agree with. It is a terrible decision to have to make and I do not believe many parents take it lightly, whatever they decide.

But some of it, profoundly, no.

‘Women who are having late term abortions are only doing so if their baby will not have any quality of life outside the womb.’

Termination of pregnancy after 24 weeks may legally be considered, in the UK at least, on the grounds of foetal abnormality if there is a substantial risk that the child would suffer physical or mental abnormalities that would result in serious handicap. There is no definition, in the law, as to what constitutes a ‘substantial risk’ or a ‘serious handicap.’ Quality of life is not required to be evaluated.

Sadly, on this basis, women are undergoing mid and late term abortions of babies with Down syndrome, with spina bifida, with hydrocephalus, with cleft palate. Conditions which do not, necessarily, affect ‘quality of life,’ whatever that means. Let alone affect it so much as for it to be preferable to have no life at all. Who are we to decide, as mothers or as a society, that those lives are not worth living, or would be better not lived?

I was advised to abort my son at 38 weeks because his brain was not properly formed. Because he would likely never walk, talk or feed himself. Ours wasn’t one of those miracle stories you read in the Mail where the doctors are proved wrong. My son is indeed profoundly disabled – he will never walk, talk, feed himself. He will likely never roll, sit, or support his own head. However, I would dispute anyone who says he has no quality of life.

And, while the child’s quality of life may be one of the reasons (rightly or wrongly) for women to have a late term abortion, I know that it is not the only one. In fact, the child’s quality of life may be less important in the decision-making than the effect on the mother and any other members of the family. I know because I could have been one of those women. The arguments (and yes, there were arguments: painful, heated, lengthy and almost irreparable ones) surrounding our decision whether to abort, centred partly on our son’s likely quality of life, but partly on the impact on the rest of the family – myself, my husband, our at the time one-year-old daughter, the grandparents. Had we decided to abort – and don’t get me wrong, we very nearly did – it would have been in no small part for the latter reason: to ensure a better life for our existing daughter, to protect her from the isolation, stigma, and lack of opportunity that may come with being sibling to a disabled child. Protection that I believe could and should be achieved by changes in society: by inclusion, accessibility, support, kindness and a lack of judgment. Not by terminating the life of an innocent individual.

I do not doubt that the mothers, fathers, families, who choose abortion on the grounds of disability do so with much heart-searching. As, in fact, do those who choose abortion for other reasons. They may do it on the basis of misinformation. They may do it under strong pressure. They may do it because they truly believe they have no other option. But that does not make it right.

‘I cannot fathom how any politician can believe that they understand more about a woman’s health, and survival, than the doctor caring for her… This is not your life. This is not your pregnancy. This is not your experience. You do not get an opinion’

No, I cannot fathom that, but this is not just – or often even at all, except in incredibly rare and tragic circumstances – about the mother’s life. This is about – as Ms Kelly agrees from 24 weeks at least – a child’s life. The child whose life is at stake doesn’t get an opinion unless doctors, parents and policymakers give them one. That is our duty as a civilised and compassionate society – to give a voice to those who are voiceless.

‘Until you have lived this hell, made this decision, held the tension of two terrible fates and had the courage to make a choice that will break you to pieces, you do not get to judge a woman or decide what is best for her.’

I have lived this hell. I have made this decision. It still breaks me every single day. I am not judging these women; I am judging the circumstances they are placed in, the information they are given, the pressure that is brought to bear, and the expectations forced upon them by the misguided and mis-prioritised society that we live in.

I wonder if Ms Kelly is confusing respect for these mothers – which I share unreservedly – with agreement with their decision. Just because the decision was difficult, just because it was made thoughtfully, carefully, heartbreakingly, soul-searchingly… doesn’t make it right. The solution to this terrible, terrible dilemma is not to make it more acceptable, easier, less traumatic to abort a baby; the solution is to work change in our society so that it is easier to bear that baby, to birth that baby and to bring that baby up, whatever its nature and its circumstances.

**As a courtesy, I offered this piece to Spinoff, the site on which Ms Kelly’s article was published. They declined to publish, saying they weren’t ‘that kind of website’. I think it’s sad that they aren’t the kind of website that would like to show two perspectives on this issue; that they are willing to publish an opinion piece about a certain group of women, but not willing to publish the thoughts of one of those women; that they are not keen to be involved in working the kind of change in society that I describe above. I hope other readers will be**

Benjamin doesn’t tick boxes

An open letter to the Head of Education at East Lothian Council

Dear Ms Robertson,

Not having a tracheostomy is a good thing, isn’t it? Not being on TPN, not needing daily IVs, that’s good, isn’t it? Not if it means you can’t access the support you need.

I am sending you an open letter, because your response to my previous, urgent email about my son’s education was met – more than a week later – with a dismissive, incorrectly addressed, response from a ‘service administrator’ advising that it had been forwarded to ‘appropriate personnel who will respond in due course.’

If this administrator had actually read my letter, she would have seen that I am not ‘Mr Davey’ but Dr Davey, Benjamin’s mother (even ‘Mrs’ would have done), and that this matter requires a response not ‘in due course’ but urgently, and not by ‘appropriate personnel’ but by someone at the very highest level who has the ability and resources to make things happen, and make things happen fast.

This is Benjamin. Benjamin is undiagnosed. He has multiple, complex, interrelating conditions affecting many organs and systems of his body, but we don’t know why. When something is wrong, it is difficult to tell which part went wrong first. Chest or stomach? Breathing issues or muscle tone or a seizure?

Benjamin is intractable. Benjamin smiles when he is happy or with people that he loves. Benjamin also smiles when he is in pain. Benjamin tenses up when he is trying to reach for something, and also when he is trying to pull away, and when he is distressed.

When Benjamin is well, he’s very well. On a good day he only needs his regular medications, four times a day, his inhaler and a saline nebuliser once a day, chest physio and suctioning twice a day, a few checks of his gastrostomy and his temperature and you’re done! When he’s poorly, he can be very poorly. He may, within a couple of hours, become so dehydrated he needs IV fluids. He may produce so many thick secretions that he cannot breathe. He may have a tonic-clonic seizure that is resistant to rescue medication and lasts up to four hours. His temperature may drop so low it cannot be recorded with a regular thermometer. His heart rate can drop to 30 or rise to 180 beats per minute. His muscles can become so tense it is impossible to bend him into a sitting position. He can vomit fluorescent green slime out of his nose (Britain’s Got Talent, are you reading?). Benjamin can go downhill very rapidly and recover almost equally rapidly. Sometimes it is impossible to tell whether he is deteriorating or improving. Benjamin needs someone on hand, 24/7, who is able to respond to all these medical eventualities.

Benjamin doesn’t tick boxes. Benjamin doesn’t meet criteria. Especially when we don’t know what criteria he is being measured against. Especially when the ‘professional’ opinion is that he doesn’t even justify being tested against the criteria. Benjamin confuses panels and confounds ‘decision making tools.’

Benjamin, like all three year olds in Scotland, is entitled to 600 hours of funded early learning and childcare per year. Benjamin has a place at a fantastic special needs nursery, attached to the special needs school provision where he will hopefully eventually receive full-time education.

Benjamin loves nursery. He loves his teachers. He loves painting and baking, soft play and ‘body awareness’. He loves the sensory area and he loves when he gets a foot massage.

I love Benjamin’s nursery. But I don’t want to be there the entire time that he is there. Like other mums of three year olds in Scotland, I am entitled to 600 hours early learning and childcare for Benjamin per year to allow me to care for and spend time with my other children, to catch up on paperwork (oh, the paperwork), to catch up on laundry (oh, the laundry), to have a coffee, go for a pee, read a magazine, get my haircut. God forbid, I could even do my job.

But, since Benjamin started his three year provision in early January, I have had to accompany him to nursery because there is no-one there who can meet his medical needs. This was intended to be a temporary arrangement until either his nursery staff could be trained to meet his needs (voluntarily, because they are wonderful, caring people who will go beyond the requirements of their role as long as it is safe to do so), or until provision could be put in place for a medical professional to be with him at nursery. This would be a ‘reasonable adjustment’ as required under the Equalities Act to ensure that Benjamin can safely attend the education to which he is entitled.

As it transpires, Benjamin is too complex to be cared for by nursery staff. They are, after all, teachers, nursery nurses and classroom assistants. They are not medical professionals. (I am not a medical professional but, since having Benjamin, I might as well be). They cannot be expected to, should not be expected to, take decisions about Benjamin’s highly complex, variable, unpredictable and rapidly-changing health needs.

Benjamin’s teachers can be trained to do chest physio but not how to tell when chest physio might make his wheezing worse.

Benjamin’s teachers can be trained how to suction him but not how to tell when he needs suction or when it would cause too much trauma.

Benjamin’s teachers can be trained to aspirate his gastrostomy but not when that is necessary, how to evaluate the contents of his stomach, when to discard them, when to stop his feed, when to switch him to a different feed regime, when to worry, or when to take him to hospital.

Benjamin’s teachers can be trained to administer his feeds but not to evaluate what rate is appropriate for his stomach at any given time.

Benjamin’s teachers can be trained to clean up if he vomits but not how to tell if some vomit has got into his lungs, if he is getting dangerously dehydrated, whether he needs to go home on dioralyte or go immediately onto IV fluids.

Benjamin’s teachers can be trained to administer his medications but not to determine when he needs a higher dose than usual.

If Benjamin’s teachers make the wrong decision, because they are not medical professionals, he could end up in A&E wasting everyone’s time, or he could end up gravely ill. It wouldn’t be their fault. It shouldn’t be their responsibility.

And yet, because Benjamin doesn’t have a tracheostomy, because he is not on a ventilator, or on TPN or regular IVs, nobody will assess him for the Lothian Exceptional Needs Service for Children with Exceptional Health Care Needs (LENS) scheme, despite that he fulfils many of its ‘issues relating to need’ including needing ‘sustained medical support … seven days per week,’ requiring ‘professional trained intervention on a regular basis or in response to an acute incident in order to prevent acute hospital admissions,’ demanding ‘a degree of complex problem solving, and revision of the child’s care plan, on an hour by hour or day by day basis,’ and an inability or lack of competence of carers to meet these needs.

Because no-one will even bother to assess Benjamin for the LENS scheme, he has been downgraded to the frankly mythical HESS (Healthcare and Education Support Service). Because no-one will supply us with a copy of the criteria for referral to HESS, we do not know what boxes he needs to tick. Because the member of staff responsible for making the referral has been slowly drip-feeding us the information we need to supply and the evidence that needs to be provided, rather than giving us a clear outline of the application requirements from the start, it has taken far longer than it should have to put all that evidence together, extending the process well beyond the end of last term and into the next. Because parents apparently have no input into this information, only ‘professionals,’ there is no one to complete the documentation: I, his parent, am the one taking care of him at nursery because there is no professional there trained to do that (Anyone else thinking Catch 22 here…?). Because East Lothian has never even signed up to the HESS scheme, there is no guarantee that Benjamin will get the support he needs through it, and in the meantime we are left waiting, hanging, clinging to the concept of a ‘decision making tool’ that we have never seen and know nothing about. From Christmas to Easter, and now into the summer term…

I know this isn’t your fault, Ms Robertson. If anything, it’s mine: fancy agreeing to go to nursery with Benjamin as a temporary measure until something more permanent was organised? How gullible was that? Of course, that removes any incentive for anything permanent to be organised! I know this isn’t your fault, Ms Robertson, but it is your responsibility, so that’s why I’m writing to you (again) now. I’m no longer prepared to give up my time and my family’s time to provide something that should be provided to Benjamin as a right. The buck stops with you and it stops now.

There are many possible solutions. You could answer – and even fast-track – my request for Benjamin to receive a Coordinated Support Plan. You could provide all special school provisions in East Lothian with a full-time school nurse. You could support Benjamin’s immediate referral to the LENS scheme. He cannot be the only child in the county who needs this kind of support? Even if he is the only one without a tracheostomy…

I don’t want to be one of those mothers. The difficult ones. The ones who kick up a fuss. The ones who go to their MP and MSP and write viral posts on Facebook and go to the press. I am nervous. I wonder, is it too early to protest? The HESS application is, after all, still ongoing. The school staff say they are drawing up a ‘timeline’. The nice lady at the council says she has sent some emails. But how long do we have to wait before we start working together on ‘Plan B’? Do I and the nursery actually have to call your bluff, refuse to provide essential medical support for Benjamin, in order for someone to take us seriously? Does it have to wait until my family is at crisis point?

I don’t want to be one of those mothers, but believe me, I will. If Benjamin does not tick your boxes, your boxes are the wrong shape. If Benjamin doesn’t meet your criteria, you need to rethink the criteria. If Benjamin doesn’t fit your ‘decision making tools’ then those tools are not fit for purpose. Maybe together we can make some better tools?

Yours,

Benjamin’s mum

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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**

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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Forty-four reasons to laugh or cry

It’s never quiet in a family of five. I’m not sure we’re any more vocal than anyone else but we certainly couldn’t be accused of bottling things up… Here are, in no particular order, 44 things that made one or more of us laugh, or cry, this weekend. Points for guessing which. Double points for guessing who. Unusually for us, only about 10% of these seem to involve bodily functions…

  1. Nobody else wanting to get up

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2. Everybody else wanting to get up

3. Somebody snoring

4. Being hungry

5. Wind (not the weather kind)

6. Rain (the weather kind)

7. Tiredness (physical)

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8. Tiredness (emotional)

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9. Cold toes

10. Hot fingers

11. The Archers

12. Being undressed (for a bath)

13. Not being allowed to undress (nowhere near a bath)

14. A helium balloon

15. Muddy puddles

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16. Muddy clothes

17. Finding an exciting plant in a verge

18. Nettles

19. Wanting ketchup

20. Wanting ice cream

21. Mummy pretending not to understand the words “ice cream”

22. Somebody puking up a whole boobful of precious milk

23. Somebody puking up the other boobful of precious milk

24. Somebody getting puked on

25. Somebody getting pooed on

26. Needing a poo

27. Tummy ache of unidentified origin (often related to #26 but this was a different person)

28. Being fobbed off with ‘fake’ (supermarket own-brand) calpol

29. Being allowed ‘real’ (pink) Calpol®

30. Falling off a bike

31. A grown man on a zipwire

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32. A complicated recipe

33. Nobody understanding what the white thing in the river was

34. Somebody shaking their head to get water out of their ears and somebody else genuinely thinking they were having a seizure

35. Not having done any writing

36. Somebody checking his phone for the umpteenth time to see if the bike parts he’d ordered at midnight last night had been despatched yet

37. The softness of a baby’s hair

38. Somebody else crying

39. Everybody else crying

40. Wanting to go to bed

41. Not wanting to go to bed

42. A naked kangaroo impression (by which I mean the impressionist was naked … As far as I’m aware kangaroos don’t usually wear clothes)

43. Not having enough animals in the bed

44. The ridiculous number of stuffed animals in someone’s bed

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On the whole, it’s the laughter we’ll remember…

Bringing home baby

A little sister for Jackie and Benjamin, Caitlin Faith, born at 1536 on February 18th, weighing in at 7lb9.5oz.

DSC_0249I started off writing an epic birth story, beginning with Benjamin being admitted to the Sick Kids in the middle of Sunday night during a three-hour tonic-clonic seizure and culminating in Caitlin’s rather sudden birth on Thursday afternoon, fortunately in the safety of the labour ward rather than in a layby on the side of the A1, as seemed likely at one point. But it was all rather dull and self-absorbed, so let’s skip on to last Friday morning when, after a big pile of fantastic hospital toast, we brought Caitlin home.

I think I was probably in some kind of shock. I had lost a fair bit of blood and a fair amount of sleep, of course; I felt like I had been in a rugby scrum. But I was also completely unprepared, mentally. Twenty-four hours ago I had been picking up Jackie from nursery. Forty-eight hours ago I had still been in the Sick Kids with Benjamin. Three weeks ago I had not known whether we were going to have this baby. I had barely envisaged the human being inside the bump; hadn’t communicated with it; hadn’t bonded. I didn’t know how to respond when the midwives said “Congratulations” – no one said that last time.

We’d never brought a baby so young home before. With both my previous two I’d had a precious few days in hospital to learn the ropes, under the reassuring eye of midwives and paediatricians, and to get to know them in peace. Yet here we were, with a less-than-one-day-old, back at home with Jackie and Benjamin, Nanny and Grand-dad, doing the nursery run, reading bed-time stories, sharing the cuddles.

I’m terrified our joy won’t last. After Benjamin, I am constantly analysing Caitlin for signs that there might be something wrong with her. Counting her fingers and toes. Watching her awake and asleep. Although she’s passed all her tests, she feeds well, she’s bright eyed, alert and wriggly, I wonder is her head too small? Her body too big? Her legs too skinny? Her breathing too fast or too noisy? Should she be moving in that jerky way? Is that normal baby posseting or reflux? What if she has a fit? She’s so perfect, do we really deserve her?

And it’s gutting to watch Caitlin, at a few days old, doing things that Benjamin still can’t. Kicking her legs, sucking her fingers. Already I have to be more careful where I put her in case she wriggles off the edge of the bed or the sofa. Having convinced myself Benjamin is functioning at the level of a few months old, I’m being back brought down to earth with a bump.

Yet for all that, it is wonderful. A new little life is always wonderful. Suddenly our little family seems a lot bigger. More chaotic, yes, but somehow more of a family. As I rushed through the front door to hug Jackie, who I’d barely seen for days, she neatly sidestepped me, yelling I want to see the new baby! Benjamin just gives Caitlin sideways glances and the occasional accidental side-swipe with his arm. But when we’re all together on the sofa, or in bed in the morning, it feels great. Jackie will always be my special first-born but now she’ll have someone to play with, to boss around, maybe to share a room with. Benjamin will always be my baby boy and now, sandwiched protectively between his two sisters, will always have people to love him. And Caitlin, our new baby girl, conceived with so much trepidation but so very much wanted, completes us.

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The long months

The eight months since that positive test have felt like the longest of my life. On top of the relentless tiredness, sickness, heartburn, constipation, nosebleeds, piles (am I oversharing yet?); on top of the endless scans and tests; has been the constant – and increasingly impossible – battle not to acknowledge this pregnancy, and the gnawing fear that I would have to terminate it.

I have to admit I never thought the doubt would go on this long – technically to full term in fact. I had naïvely hoped we might know either way by Christmas, or early in the New Year. In the end our final MRI scan was scheduled for Tuesday 26th January – which turned out mark the start of the longest week of waiting of all. When we arrived for the scan, the hospital was in the grip of a power-cut and running essential operations only. The staff searched around and managed to find us an appointment a few days later, on the Friday. The scan was successfully performed, but there were no doctors available to interpret the results. After a restless further weekend of waiting we finally got the phone call, late on Monday, 37 weeks in, that everything looked normal. The relief was almost too much to take in.

Don’t get me wrong, my relief is not that we won’t be having a disabled child. I know I could have loved and cared for another like Benjamin, that he or she would have been a valuable addition to our family. But that wasn’t an option. My relief is that at last, with no more scans or tests to go through, there is now nothing that can prompt a termination. I won’t have to fulfil the promise that I was no longer certain I would be able to keep. Our gamble has paid off. Our little family has survived, and some time in the next month, it will become a family of five.

Cue a frantic rush to get ready everything we hadn’t dared to before. To get the mountain of baby clothes down from the loft and sort them; to clean the cot, the buggy, the sling, the car seat; to start discussing names. My amazing husband not only surprised me by coming home early, bearing flowers, the day we got the good news, he also rushed upstairs that evening and started putting together bouncy chairs and baby-gyms that had lain in pieces in the loft. In my self-absorption I hadn’t realised that he, too, had been finding the long wait so hard, and the relief so immense.

Jackie too, although she doesn’t know the back story, is desperate to meet the new baby. At nursery she draws picture after picture of “Mummy and the baby in her tummy.” She keeps asking, when will the baby come? I’m so glad we won’t have to let her down (although if it’s another boy she will not be impressed!). And Benjamin, though he doesn’t know it, will benefit from having another child to watch, learn from, and emulate.

Worth millions when she's famous

Worth millions when she’s famous

Today my wonderful friends at Kidzone (our local SN early years group) threw me a surprise baby shower. I was totally gobsmacked. I have no idea how they managed to organise cakes, balloons, games, food, presents, in the few days since the scan result. But what was really special was to be surrounded by so much love – for me and for the baby. I came home laden with gifts including a whole set of tiny white bodysuits, each decorated with a unique design (and all the left over cake, of course).

Dare I put these works of art through the wash?

Dare I put these works of art through the wash?

So finally, after the long months of waiting, hiding, fearing, masking our feelings, we can all look forward with joy (and a small amount of trepidation). As the crocuses start to poke their heads up through the soil, we emerge, blinking, from a dream into the light. Whether or not the moses basket is ready, whether the name is chosen, whether the freezer is stocked or the house is clean, our little one will be joining us soon. He or she is head down and ready to go. Thank you for following me on this journey without judging our choices, for putting up with my outbursts of grief and hypocrisy, for listening. I can’t wait to introduce you to our new arrival.