Learning a Limb-Different Language

Learning a Limb-Different Language

Hero is officially one month old today. Where on earth has that time gone? It feels like she arrived with us only this morning and yet somehow she’s been a part of our lives forever.

The first four weeks were bliss; a picturesque honeymoon. I could think of nothing better than looking at her, holding her, showing her off to all and sundry. We watched her slip seamlessly into our busy and chaotic lives, bringing an element of calm and stillness, and yet flinging everything on its head at the same time.

Such confident honeymooners were we that we’ve taken the poor girl camping at medieval events twice. Despite initially bringing on some acute anxiety episodes, both trips did wonders for my parenting confidence. Perhaps a little over confident, my Health Visitor seemed to suggest, after I told her I’d been on a bouncy castle three-weeks after giving birth.

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In these blissfully never-ending early days, that paradoxically pass all too quickly, Hero is all sleepy eyes, beautiful stretches, arm-waving reflexes and a tumble of strange noises designed specifically to keep Mum awake at night.

What Hero isn’t, is disabled. She has barely any control over her left hand yet, so the idea that she might notice she is missing her right is laughable. But that doesn’t mean that, as time goes on and that reality steals in, that I’m not aware of it. I find myself gazing at her little hand, wondering what the future will hold for her, watching the post-box for the referral letter to the plastic surgery department.

Parenting vs Possessing

We don’t fully understand why we’re being referred to plastics (as wonderful as the care she received was, the communication in the neonatal unit was patchy). Are they thinking that those little fingers might need to be removed? The tiny thumb certainly catches on the sleeve of her grows as we dress her, its delicate attachment so fragile. But if removing them is the route they are planning to tread, then they would have to give me a very solid reason for doing so. Before I gave birth I naively thought that being a parent would be like ‘owning’ a child. Surely I had a right to make decisions for her in her inability to do so. Yet now she’s here, utterly dependent on me in a way nothing has ever been or perhaps ever will be again, I can’t escape that sense that I am just the caretaker of her little body. I’m caring for it on borrowed time, a foster carer if you will, until such a time as it becomes hers entirely, to do with as she will – be that tattoos, piercings or plastic surgery on her little hand. There’s no way I could consent to removing those beautiful, characterful little fingers for anything less than a sound medical reason. If it’s suggested to us that the little pad of muscle would be more ‘useful’ without them, if there was a risk of infection or injury, we’d have to consider the options carefully. I couldn’t bare the thought of one day, years from now, Hero turning to me and asking why she had tiny fingers when she was born and why she doesn’t have them now. When and if that question comes I’d have to have a damn strong answer, anything less than that would be an utter betrayal of her inherent trust in us as her parents. And how, after all, could you condone the removal of things so sweetly beautiful in the name of aesthetics?

 Where’s Our Baby Babel Fish?

Living with a child who’s limb-different is a bit like learning a new language. Hell, it’s like coining a new language all your own. Words that used to be utterly innocuous to you now raise your blood and spark your emotions in the most inflammatory way.

Stump. Stump is a word that used to represent the base of a felled tree. Now it’s a red rag to a bull. Approaching Hero’s little hand from opposite ends of the spectrum, as we have all the way through, my husband often referred to her hand as a ‘stump’ in the early days. It was a way of distancing himself from the emotion of it, a way of desensitising. Yet to me, each time I heard it was a slap in the face. The word screams at me of incompleteness, of imperfection, of lacking. In the tumultuous hours and days after giving birth the word would instil in me a primal rage the like of which I don’t think I’ve ever felt before. How dare anyone refer to my child as anything less that completely and utterly perfect in her own way?

Unfortunately, the medical lingo for a new born baby’s cut cord also seems to be ‘stump’. There were numerous occasions, as I hovered protectively over her incubator while the consultants surrounded her clipboards in hand, where they callously threw around the word ‘stump’ as if I wasn’t even there. They might as well have been calling my baby a ‘cripple’ for all the ferocity of my reaction. It was only after one of the poor consultants gave me a slightly disconcerted look and told me they were discussing baby’s cord, that I realised they were not actually the politically incorrect vultures I took them for. Yet even now the word, in any context gives me a little twitch, my metaphorical hackles rising ready to defend my child to the hilt.

Then we come to the conundrum of what we call her missing hand. It’s not a hand after all, no matter which way we look at it. Looking at those painfully fragile little digits I could never quite bring myself to call them ‘nubbins’, yet again with no bones or muscle to speak of, how can we call them fingers? Last week Hero’s great granny called them ‘buttons’, a word I find myself much preferring to ‘nubbins’. Time will tell if the word sticks.

So, as we trundle through our fifth week of parenthood, grappling with our own personal philosophies and approaches to every day parenting joys, like feeding and sleeping, we also find ourselves trying to navigate a world of new words, stepping carefully so that we don’t squash each other’s toes.

At the moment we’re a long way from fluent and I expect we’ll remain so until the little one comes into her own and gives us a helping hand with this strange new language.

 

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Welcome to the World Little One

Welcome to the World Little One

After of months of acute anxiety, pre-natal depression and insomnia, Hero Gwenhwyfar was born on 5th August, and all of my worries literally melted away.

After emerging from my initial Darth Vader-impression-laden, drug-induced, haze I couldn’t help but smile. It was all over, everything I’d been worried about; all of it happened. It was the total and utter opposite of my impeccably detailed birth plan, yet none of it mattered. Not even slightly; it was all ok.

After inhaling and swallowing her own poop on the way out, Hero was whipped away from us within moments and taken up to intensive care on the neonatal unit, where she would spend the next six days receiving the best care possible while I recovered and pined for her on the ward above.

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I’d been secretly worried during pregnancy that the first thing I would want to look at when she was born was her hand. Parents at Reach assured me that that wouldn’t be the case, but secretly I doubted them. However, when she was placed in my arms, hooked up to a myriad of drips and monitors, all I could see was her absolutely perfect face. Her perfectly squished nose. Her perfectly fluttering eyelids. Her perfectly imperfect hand was the last thing I turned to.

Her hand was perfect. She has the ‘nubbins’ I was so worried she would. And despite all my fretting, all my stewing, I love each and every one of them. Since escaping the hospital, and the absolutely faultless NHS care we all received, there’s been the odd hesitation or double-take when people have met her. Each time it’s taken me a couple of moments to realise what they’re double-taking at – all I see when I look at her is perfection and I forget that others might see something else.

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There have been tears. I’m a hormonal first-time mum with a newborn, of course there have been tears. But in the 9-days since she arrived in our world I’ve only cried once for her missing hand. As I’d put my fingers against her she had tried to curl her little paw around one of them. She was trying to hold onto my finger, but there was nothing to hold on with. So yeah, there have been some tears, but not nearly as many as I was expecting. Now she’s arrived I see clearly; my girl isn’t disabled at all. She’s differently-abled and that’s something for her to be fiercely proud of.

And unexpected positive of her dramatic arrival was that the Paediatrician needed to X-ray her lungs. While she did so she X-rayed Hero’s little arm and her spine. They ruled out, once and for all, the chance of her diffability being a result of genetic issues. They ruled out, in short, anything more serious being wrong, the very worst-case they’d warned us about as they floated the idea of a termination after our 20-week scan. After that it was difficult to worry much about her at all. She was in the best of hands, and her rosy cheeks told us she was in the best of health, despite a little meconium on the lungs! Far from worrying about her, every time I saw her I was more confident of her health. After months of being told she’d be tiny, she’d be weak, she might even be seriously ill, I found it was almost impossible to worry overly about her when she had proved all of those fears wrong even in the first moments of her life.

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What’s in a name?

Another pre-birth worry, which has so far amounted to nothing, was about her name. Hero Gwenhwyfar.

We picked out the name Hero when I was just 16 weeks pregnant. We’d bandied about so many possibilities for her name, but after seeing Shakespeare’s Much Ado About Nothing for the first time, the name Hero just stuck. It seemed to cover everything we wanted it to, it was feminine, yet strong. It was Shakespearean, yet classical. In short, it was perfect.

Then we’d found out about her hand. I panicked. Obviously we couldn’t name her Hero any more; people would think we’d named her that because she was disabled, because she was our “Hero”. When I voiced this concern to Ben he dismissed my worries out of hand.

“Are you going to treat her any different just because she’s missing a hand?” he asked me. Obviously my answer was a resolute no. So why then would I start by changing her name because of it? Let people think what they will. She was ‘Hero’ before she was missing her hand, and she’s ‘Hero’ now.

So with the anxiety fading away, with the depression evaporated, we are absolutely loving life with our tiny, beautiful, perfectly imperfect daughter and we can’t wait to see all the ways in which she’ll amaze us as she grows and develops over the coming months and years.

Welcome to the world little one, you could not be more welcome.

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Achievements and Aspirations

With eight weeks left to go until the due date our house is filling up with baby paraphernalia, incredibly generously provided by friends and family. We’ve been totally and utterly overwhelmed by the amount we’ve been given, and even though baby isn’t here yet we’re super excited for when it becomes our turn to pass stuff on to the new generation!

I feel really proud knowing that our little girl will be lying on, wearing and playing with things that belonged to her amazing family and friends before her. What could be better?

Amongst all the excitement the jamboree and other issues, Baby’s ‘lucky fin’ has somewhat taken a back seat. We’ve of course got all the normal stuff to be excited and worried about; there was a huge amount of relief, therefore,  when Ben’s best friend fitted our car seat for us. At least if she comes early we’ll actually be allowed to leave the hospital now!

Despite the fact that the hand has taken something of a back seat for us, jumbled in amongst health issues, a house/disaster zone and numerous car woes, we’ve still been unable to avoid comments, messages and links to inspiring videos and testimonials of one-handed people who conquered the world. When something becomes personal to you, you cannot help but notice it everywhere. Last week I was listening to the incredibly talented Nicolas McCarthy on Radio 2, with absolutely no idea that he too was born without his right hand. How utterly strange for me to hear about him now of all times, and to not even have been looking for it! The realisation that having one hand doesn’t exclude you from pursuing a musical instrument at any level was a breath of fresh air. Baby may, of course, be totally hampered by her mother’s intense musical apathy, but at least she has the option we feared she wouldn’t have.

One some days these success stories are wonderful to hear, so why then from time to time do we find all of this focus on one-handed achievements patronising and upsetting?

I think there’s an element there of the fact our little girl is going to be just that, our little girl. Just because she’s missing her right hand doesn’t mean that we’ve suddenly changed our expectations of her attainment. Nor indeed does it mean that we suddenly feel that she will be capable of less. Just because she’s got a small disability does not mean that she now needs to prove herself to us, to her family or to the world by becoming a concert pianist, a paralympian or an international one-handed climber.

Sure, she could do all of those things. Missing a hand never really meant that she could or would achieve any less, despite our initial fears borne of shock. Before we discovered her ‘lucky fin’, as we nurtured dreams of our completely flawless infant, there was no compulsion for people to reassure us that our child could be an international sports star or a world-renowned musician. What would be the need? So why now would we aspire for her to reach to such insanely high heights?

Our dreams for our daughter remain irrevocably and resolutely unchanged. We just want her to be happy. If our little girl can go through life with a sense of value, self-worth and confidence then I couldn’t care less what path she chooses to take in life. She might follow her dad, emulating his drive to achieve and his tireless motivation (so long as there’s no DIY or housework involved!). Then again she might be like me, cruising through life ever distracted by the little things around her. Either way, it’s ok.

If she grows up to be an average human being, not weighed down by medals or accolades, if she’s smiling with genuine happiness, pride and a zest for life, then we’ll be the happiest parents in the world. Please don’t get me wrong. We’ll encourage our daughter to try anything and everything she can or wants to do. Achievement and a desire for success is no bad thing; we’d be over the moon and appallingly proud if she chose to follow that route!

But that doesn’t mean I want to surround her with images of high achievers like some kind of hall of fame she should aspire to in order to justify her existence. There should be no more pressure on her tiny shoulders than any other child would have had as they came into this world. She’s already missing one hand, that’s enough in itself, without feeling like she needs to follow in the footsteps of the trailblazing one-handed greats in a bid to justify or prove her worth.

Just Keep Swimming

Just Keep Swimming

Ben suggested that we should decorate the nursery with a Finding Nemo mural after we found out about Baby’s hand. I was horrified. He’d already made jokes about having framed pictures of famous one-handed characters on the nursery wall, from Luke Skywalker (pretty tempting in fairness) to Jamie Lannister (less so).

In those early days, shock still running rampant, I thought that I would raise my daughter to see herself as nothing other than the same as everyone else. Not to see herself as ‘different’. I was determined that she would have the exact same upbringing as every other child, and surrounding her with pictures of one-handed people or fish was going to seriously hamper my efforts.

Yet, if my first baby retail-therapy spree is anything to go by, I’ve changed my mind somewhat as the weeks have gone on. As I’ve trawled the internet, blogs and forums for stories and information about upper limb differences in children, one thing cropped up again and again: Finding Nemo.

I didn’t get it at first. Why all the fuss? Nemo’s “lucky fin” hardly seemed to feature in the film. If you’re asked to recall the story, I’m pretty sure his fin difference would hardly enter into it. Nemo has a damaged fin, he’s protected and closeted by his well-meaning father who frets that his son just isn’t able. However, it turns out that there isn’t a damn thing that Nemo can’t do. Nemo’s different, sure, but he’s not disabled. As the Reach charity would say: It’s his ability, not his disability that counts. Slowly I started to realise that the very fact that it wasn’t a prominent feature of the film was the entire point. That’s why people in the limb different community love it so much. That’s why I’ve found myself obsessing over Nemo baby paraphernalia and caving in at almost every orange be-finned opportunity, when I’ve managed to resist buying just about anything else baby-focused.

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Thank you disneystore.co.uk!

Bit by bit I’ve begun to accept that my daughter is going to be different and, for her sake, I need to enable her to see that for herself. She’s different, and that’s so damn OK. I never want her to feel she has to hide her arm up her sleeve. That she needs to explain things to others. That she needs to justify her own independence or that she has something to hide. It’s becoming more and more obvious to us that it will be Ben and I, as her parents, who need to take a step back. It’ll be us who need to resist the urge to wrap her in cotton wool, to protect her from any hardship, like poor Marlin tried and failed to do at the start of the film.

I’ve been fretting about how she’ll open a bottle, how she’ll use a pair of scissors without another hand to hold the paper, how she’ll do something as commonplace as washing her hands. Now I realise that I don’t need to research it. I don’t need to panic on her behalf. She’ll find a way and it’ll be the best feeling in the world when she does, because it won’t be anyone else’s way. It might not even be the ‘right’ way, but it’ll sure as hell be her way.

The Choice Illusion

Today was the first of five NCT antenatal classes. We were both a little apprehensive. Ben was in full dodgy-humour mode and I was my usual cantankerous-self.

In a way our fears (although neither of us were sure what exactly we were nervous about) were simultaneously realised and eased. Just being around and meeting other people in a similar situation to us was a breath of fresh air. Everyone was friendly, welcoming and impartial, the tutor was excellent.

As the weeks tick by and my mind is starting to wander to the birth, I was fascinated to learn about the different hormones that play a part in the birthing process. With a particular anxiety around birth (something I’ve had pushed from my mind of late) I’m developing a keen interest in the concepts of Hypnobirthing (I took great umbrage at Ben’s concern that it may just all be “mumbo jumbo”) and other meditative strategies to keep myself calm during birth and to keep the good hormones flowing.

At the course it all turned a bit for me when we split into groups to discuss the myriad of different birthing options available to us. Nothing makes me want to stick two fingers up at my pregnancy more and when people start discussing our choices. I spent the first half of the pregnancy completely unable to even consider the thought of my baby and unable to look past the apocalyptic event which I viewed the birth to be. This, coupled with existing anxiety, spiralled out of control into me being diagnosed with “pre-natal depression” (I’m completely sure that I’d be in a much stronger position now, despite everything, if I’d not started from an already shaky  foundation!). It was isolating and frightening and, at the time, I’d been unable to find anyone else who felt quite the same way as I did.

That all changed somewhere in the middle of the second trimester when my new midwife brought up the idea of giving birth in a midwife-led birthing centre or even having a home birth. I had absolutely no idea up until that point that I’d had a choice outside that of giving birth in a hospital. As simplistic an idea as it may sound, it completely transformed my life at the time. I had gone from feeling like I was trapped on a conveyor belt with no means of escape and that it would all end, one way or another, in a hospital to suddenly finding myself leaping out of the trap and being handed control of the whole birthing experience.

I was liberated and totally and utterly excited. I could, after all, have a “normal” birth. I could be in a place that didn’t send my heart rate rocketing and those chains tightening in my chest. For one idyllic month I was making plans to tour the local birthing centres with my midwife, something I’d shown absolutely no inclination to do with the hospital maternity wards. I was excited again about Baby’s arrival, I no longer saw birth as the end of the road, but as the beginning.

Then the 20-week scan happened and my luxurious choices were lost to me. If I was (as the consultant put it) insane, I could definitely give birth in a birthing centre. But that it was strongly, strongly advised that I gave birth in a hospital. This, despite my attempts to convince them otherwise, was confirmed by every other consultant, midwife and paediatrician we have since spoken to. Those choices felt like a distant dream, and an illusion.

This has led, over the past six weeks to me feeling that I simply don’t care about the birth any more. So long as baby is safe, it doesn’t exactly matter any more what I want. It’s turned into an intense apathy. I don’t want to tour the hospital maternity ward. I don’t want to read any books on birth. I don’t care even remotely if I have a water birth or not, something that people keep bringing up. What does it really matter any more?

Perhaps this sense of being robbed of the choices I’d been so utterly transformed by and relieved to receive is where a lot of my anger lies. It’s an anger that I’m not aware of most of the time. It’s an anger that seems to bubble up any time we do something officially baby-related; scans, hospital appointments and, apparently, NCT courses too.

It’s an anger that’s the driving reason behind refusing any further scans or check-ups from now on. It feels almost impossible to feel entirely normal about the whole pregnancy ‘thing’ when any expectations you might have had have been wildly different to the reality. From 24/7 sickness, to depression, to anomalies. It’s been one thing after another that tells me that reading “What to Expect When You’re Expecting” is an utterly pointless exercise. Unless of course, you’re able to expect the unexpected. Something I hope we’ll be a lot more adept at should we have a second child!

This is a good point to stress that it’s not all bad, of course. I am acutely aware how much worse things could be. How much worse so many others have to go through, over and over again. I feel privileged, lucky and blessed when I think of the alternatives. However, those little gremlins on your shoulder start nibbling at you as you’re surrounded by other, less complicated, pregnancies. It gnaws away at you as you realise that you still have two months to wait, two months more of this anxiety and this cheerful pretence. Two months more until we’ll receive the best gift we’ve ever been given. It’s like being a child again, watching the clock in apparent stasis on Christmas Eve, feeling that you can’t possibly survive the torment of the wait until the next morning, all the while knowing that you have no option and savouring the excitment.

I thought it was very telling about our current mental state when, at the end of the session, we were all asked to pick one word from a whole raft of words to describe how we were feeling. As everyone went around they shared their words: ‘hopeful’, ‘empowered’, ‘confident’, ‘excited’ and ‘informed’. ‘Tired’ was the most negative word to come up. We picked anxious: Anxious and hopeful (impatient wasn’t an option). I know which one was running stronger as I left.

 

Bringing Normal Back

Six and a half weeks.

Twelve scans.

A few answers (but mostly questions).

And I’ve had enough.

At the start we saw no reason to question our consultants when they brought us in for more scans. We welcomed the offer of answers, for more detail on the nature of our little girl’s little arm. It’s taken me until last week, the latest out of a long line of scans, to realise that they don’t have any more answers than I do. That right now, what would be the best thing for me, and consequently I guess, for Baby, would be to just get back to some kind of normality.

The latest consultant scan at our local hospital saw her right forearm measurements drop off of the chart beneath the bottom average length for her age. But we were told: “not to worry”. Try telling any parent not to worry when one of those little measurement dots drops off the bottom of the bloody page!

We were also told that she may yet have a digit or two. Then again, she may not. She may have some wrist movement, then again, maybe not.

Basically, we learnt absolutely nothing new. In a bid to reassure me, with all the best intentions in the world, we were also referred to another specialist clinic to have Baby’s heart checked out. They believe the arm anomaly to be caused by an issue with vascular development and, after a terrifying hesitation over her heart and a “I’ll come back to that,” from our consultant at the previous scan, they felt that ruling out cardio vascular syndromes would be sensible. At the time, still wiping gloop off my thoroughly prodded and poked bump, we readily agreed.

It was only later on that evening that I realised, categorically, without any of my characteristic indecisiveness and doubt that I didn’t want Baby to have a heart scan at all. I didn’t want to know whether there was a risk that there could be anything else wrong with my baby. I didn’t want to go through any more fuss, only to be told that everything is ok (as I feel in my gut it will be. I’ve dreamed all this before, of course). Before this latest appointment I had managed to get myself into a state of blissful calm and excitement for baby’s impending arrival. A couple of days spent in the idyll of my good friend’s home with her beautiful and captivating 10-week-old daughter was absolutely the best tonic I could have had to get me back on track.

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So we’ve pulled the plug on everything. We’ve cancelled our cardio referral and I’ve told my midwife that I don’t want any more appointments other than the usual check ups all pregnant ladies should have. It feels a little daring, a little rash, but right now it feels absolutely right. At almost 27 weeks we are well past the point of no return, and we wouldn’t have deviated at the crossroads whatever we may have known. If there are any issues with her heart, we’ll find out once she’s born and we’ll cross that bridge then, with her leading the way.

All of these feelings, the decision already made over dinner, were compounded and confirmed when we turned up for our privately-booked 4D scan experience that evening, after the latest raft of could-be/couldn’t-be’s. I had stressed on the phone at the point of booking that I didn’t want all the frills that the 4D scan service provided (including photo key rings, magnets and gift bags) and that all we really wanted was a little reassurance. To see her face was A’ok, to check her little hand and feet were all good, and of course, to see her little arm and to once and for all get an idea of what we were dealing with.

True to form, Baby had her little arm tucked up behind her head and completely out of view. She was very happy to share her feet with us though, and her gorgeous little face (I am over the moon to see she’s gotten her daddy’s mouth and lips). She even yawned three times on the camera; totally surreal. But she would not show us her arm.

And between that, and the photo we’d received earlier that day of her left hand throwing us the high-five, I felt like she’s telling me that enough is enough too.

Stop looking for answers.

Stop looking for solutions.

I’m absolutely OK, Mum.

I am OK.

I’m going to be OK.

I cannot wait to meet you, but all in good time.

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Trying to find a little peace of mind

I know that my baby will be ok. I know that she’ll overcome the hurdles of being born without a right hand, with a smaller right arm. I know that she’ll rise to the occasion and live a beautiful life. I know that right now, nestled in my womb, she has absolutely no idea that anything is even ‘wrong’. She won’t know that there is for years to come. So despite knowing this, why do I feel so shit? I feel like I’m trapped in a washing machine on full spin, like my emotions are a turning kaleidoscope. I’m swinging from laughter to tears, to rage. I’m swinging from feeling absolutely fine for days on end, to snapping rudely at people who wind me up in public and not always fighting the urge to just bloody hide from it all.

I’ve been sat thinking about writing this blog post for well over a week. I have trawled the internet in search of the key, of the confirmation that it’s OK to just feel this bad right now. Unfortunately, most of the posts geared at parents whose limb-different children are already in their arms. They’re super positive, as they should be, as I know I’ll be too once our little girl arrives but which I simply can’t cope with right now.

Right now, she’s not in my arms. She’s not here to prove to me, day by day, that everything is going to be ok. She’s still just an idea, just a bubbling sensation in my tummy. Her very absence, our inability to hold her and see her, is what makes all this so difficult right now. What else might be wrong? Does she have any other issues we haven’t picked up on yet? What will her arm actually look like? Will it continue to grow; will it be stunted and shrunken?

I think that I want, for the first time in my guarded life, to step out from behind my well-armed defences. I want to do this in a bid to help me to understand my own thoughts and emotions and I want to do this just in case, on the off chance, that it might help someone else going through something similar in the future. Perhaps this little shard of honesty might let someone else know that it’s OK to feel rubbish while your pregnancy, which every scrap of media tells you should be perfect, has been derailed by a bombshell tossed in from left field.

GUILT.

Guilt is my arch nemesis. It wakes me up at night, it leans in over my shoulder every time I feel, well, just about anything. When we first received the news at our 20-week scan, compounded by the (mercifully unfounded!) worries that there could be significant other life-threatening issues, I felt guilty that I’d done something wrong. That I’d eaten too much of something, or not enough of something else. That I’d had a drink or two the night before I found out I was pregnant. Was it because I’d lifted heavy objects in my stubbornness to carry on as normal despite the pregnancy? Luckily for me, I have a very direct consultant who told me in no uncertain terms that none of the above was the case. And luckily again for me these irrational, but by all accounts totally normal, feelings on guilt passed swiftly for me. Nothing broke my heart more than when my husband (who is my absolute rock) admitted that he felt he’d let his daughter down before she’d even been born.

While that painful first stage passed quickly, the guilt didn’t go away, it simply changed shape and form. The guilt became about my own feelings. Every time I felt happy in the early days, I felt guilty. My baby is not ok, how on earth can I be feeling fine?

Then as the weeks wore on, and we received the good news that Baby’s brain, face and heart were all ok, the guilt started picking on me for feeling bad. We had the wonderful news that Baby was going to be ok in all other respects than her missing hand. So why, why the hell, did and do I still feel so rotten? When we first found out about the hand my predominant feelings were of shock. Followed by the sweeping statements that “so long as everything else is ok, we don’t care about a missing hand.” Now we’ve had as close to an all-clear as we’re going to get I’m as surprised as anyone to discover that actually, I do care about a missing hand. I care deeply that my little girl, the one I’m supposed to protect and support, is going to have bigger hurdles to get over than we’d imagined. Despite the constant reassurances that she’ll be fine, that she’ll be normal, that she’ll adapt, there’s simply no escaping the fact that she’ll have all of those ‘every-day’ hurdles to get over, but also plenty more of her own.

I feel guilty because, if I know that she’s going to be ok, does that mean that I’m actually upset for myself? If I’m upset for myself, and for my husband, does that make me a bad parent? Am I being selfish?

I know, with more certainty than I’ve felt before, that I will love my daughter to the ends of the earth and back. I know that her missing hand will do nothing but increase my love, my devotion and my passion for her well being. I know I won’t care a jot when I look at her – other than to mourn for her loss. Her loss of opportunities. Her loss of choices. Not all opportunities. Not all choices, but still some, maybe even many. But I know that I will do everything in my power to ensure that my daughter is a confident, proactive young lady with a sense of self-esteem I am often missing myself.

As comforting as this certainty is, as confident as I feel about her life post-birth, I just can’t shake the wobbling sense of uncertainty, of depression, which can see me crumble into tears within seconds. If I know she’s going to be OK then what right do I have to feel blue?

When people have so much worse to power through, when people receive the news we had dangled in front of us but mercifully dodged, how and why should I feel so upset about a missing hand? The guilt of knowing that things could have been so much heart-breakingly worse. Yet, also knowing things could have been better too. Things could have been perfect.

GRIEF.

I guess that grief speaks for itself and I had to try incredibly hard not to explore my feelings of grief in the guilt section, and in a way it was impossible not to touch upon for at least a second. But the grief that I feel, that I share with my husband, is the chief trigger for the guilt. The two emotions are inextricably linked. They are the ying and yang of my emotions. Where one arises, the other inevitably follows.

It’s the grief for the loss of our perfect child. The one every film, every pregnancy app and book tells you that you should have.

The grief is all about the little things.

The realisation that my wonderful, excited and deeply caring husband will not automatically be able to share his lifetime loves of violin and hockey playing with his child.

It’s that moment when you watch a friend’s small child grappling their two perfect hands around a toy and you realise that your daughter, however normal, however confident, just won’t be able to do it that way.

It’s that moment when you both stop and realise that you and your husband won’t be able to hold your daughter’s hand at the same time.

It’s that moment when you realise that, no matter what the consultants say, no matter what you tell your friends, you are not going to ‘enjoy’ another moment of this pregnancy until you have your little girl tucked up safely in your arms.

It’s a grief that she will not only have to overcome all the normal hurdles and troughs of childhood, but that she’ll have a whole battalion of her own demons to fight as well.

It’s knowing that one day she’ll come home from play group, school, a friend’s house or college and she’ll slam her door in frustration and she’ll just cry because of the injustice of it all. Because someone said something, because she couldn’t achieve something she wanted to, because she’s just goddamned different. And when that time comes, it’s knowing that you’ll feel every ounce of her pain but also have to hide it well enough to help her sail through that storm.

It’s the fear that, whatever you do, however hard you try, you won’t always be able to shield her from that. It’s the conflict between wanting to let your daughter know that she is perfect just the way she is. That she can do anything she sets her mind to. But that, from time to time, it’s OK to feel angry. It’s OK to feel let down, it’s OK to feel frustrated and sad.

HOPE.

And then there’s hope.

There’s the hope of knowing that we’ve been lucky enough to have been given three and a half months to prepare for her arrival. Yeah, that’s a little tough for us right now in our swamp of uncertainty, but for her that’s pretty damn awesome.

For her it means that when she arrives she will have two parents who’ve come through the shock, who have considered as many eventualities as they can and who have put support networks in place for her right from the outset.

There’s the hope that we receive from other parents out there who reassure us, day by day, that we’re all going to be ok. The hope we have already received from REACH – Association for Children with Upper Limb Deficiency and their community: that our little girl is going to be just fine. It’s the hope we find in the personal accounts, the blogs people have taken the time to write, in the picture books some kind soul saw a gap in the market for.

It’s the hope I find when I watch Finding Nemo that despite having his ‘lucky fin’ there was nothing that Nemo couldn’t do. And in that same vein I hope with all of my considerably deeper heart than I realised, that our little girl will feel the same and that even when the time comes that she doubts herself, her mum and dad will move heaven and earth to get her where she wants to go.