Expecting The Unexpected: Pregnancy after a limb difference

Expecting The Unexpected: Pregnancy after a limb difference

I always hoped my second pregnancy would be radically different to the first. The first started out in blissful ignorance and with us referring to the 20-week anomaly scan as the “gender scan” – ho ho ho! However, we were rapidly disabused of that ignorance, as the sonographer hung up her scanning device and told us there was a problem. The problem they were sure of was that our first baby was missing her right hand. The problems they weren’t sure of were endless. She’d been unable to scan baby’s head or heart and was seriously concerned that there was something significantly life threatening or life limiting wrong with her.

We were ushered into a family counselling room, where I finally went to pieces. From there we were whisked up to the Fetal Medicine Unit (FMU) where they explained all the myriad of terrible things that could be wrong with Hero. They emphasised the abortion cut off limit of 24 weeks. We had precisely 4 weeks to find out what was wrong and to decide whether we should keep her or not (although there was never any doubt to our mind what we would do).

Four days later we were in a specialist hospital for more scans. I don’t think I’ve ever had four days last longer than those. To not know whether to hope or to mourn, to desperately seek hope and reassurance and yet to fear the very same was exhausting. The uncertainty lasted four weeks in all before we were told they were “fairly sure” that baby would be OK, aside from a missing hand. We never got anything more certain than a ‘fairly sure’ – which was our fault. We’d rejected any invasive tests not wanting to put any more risk on our one in 32,000 babe.

Anyone who’s followed our blog knows how everything turned out. It couldn’t be brighter, it couldn’t be better and we couldn’t be happier with our little girl! Fears for her health out the window, fears for her ability melted away: We’re incredibly lucky and are thankful for it every day.

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Yet an experience like that does leave a mark and there’s nothing quite like a second pregnancy to trigger it off. Only my feelings going into things second time around haven’t always been exactly what I expected. Going along to pregnancy scans were a very different kettle of fish this time around. We approached them with a sense of apprehension we didn’t really have last time.

We weren’t helped at all by having a scare at 9 weeks and another one, far worse, at 14-weeks. We were told to rush to the hospital and were accidentally sent up the Fetal Medicine Unit. The moment I walked through the door I broke down. I know the FMU isn’t meant to be hell on earth, but for me it was a place of huge fear, upset and (mercifully temporary) heartbreak. I couldn’t believe I was back there again and under yet more horrible circumstances. Luckily for us we’d been misdirected, were sent elsewhere for the urgent checks and were free to breath another day after investigations proved baby was looking fine despite everything.

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Baby #2

But aside from all that, and the small incident of my badly broken arm, everything else so far has surprised me, pleasantly for the most part. I’ve been surprised by my reactions, I’ve been surprised by my expectations and my responses and I’ve been surprised how good I can feel now after what’s been a pretty stressful twenty weeks!

 

Surprise: Baby’s got two hands!

At our 12-week scan for Baby #2 the sonographer had read our notes, took my intense anxiety into account and kindly spent a lot of time thoroughly checking all of Baby #2’s limbs. Everything looked good. We even saw both the hands on the screen at which point the sonographer turned to us and beamed. Isn’t that wonderful?!

I wasn’t immediately sure why, but I walked out incredibly relieved that everything looked well but my over riding feeling about having seen both hands wasn’t actually relief – it was almost disappointment.

Why on earth would I be disappointed that my baby looked ‘perfect’? I didn’t voice my feelings right away; I didn’t want to sound ungrateful, crazy or churlish. But as I thought about things more, I realised that Hero is absolutely perfect. I wouldn’t change her for the world and every day I celebrate her difference, her personality, her skills and her talents.

Why on earth would I be relieved that Baby #2 had both hands, when my first child was getting on so spectacularly with just the one? Why would I be relieved when I was so fiercely proud? I know there will be harder times ahead for Hero, there will be insecurities, frustrations and upsets and I would never wish upon her, or anyone. But to me she’s utterly perfect and I’m doing everything in my power to bring her up to see that. It would be hypocritical of me to celebrate Baby #2 having both hands, while at the same time believing that Hero is perfect as she is.

Another little bit of the disappointment came from realising that, as much as I celebrate Hero, I don’t really want her to be the only one. We attend Reach family days throughout the year, I show her videos of awesome limb different celebrities, all in an effort to make sure she never has to feel isolated or alone. There’s no doubt that without Reach or the Internet, she’d be the only one in our circle; she would be alone with her difference. I think a little part of me actually wanted Baby #2 to miss a hand as well so that in being different they could both in some way be the same. A part of me was disappointed, not for me, not for the baby, but for Hero.

I know it doesn’t matter – I suspect Hero won’t even care or notice! And I know that I will love both my children with the same fervour, pride and intensity – for all of their differences and for all of their similarities and I can only hope they’ll feel the same about one another.

 

Anxiety: The dreaded anomaly scan

Despite knowing that Baby #2 had two hands, the awful, dreaded 20-week anomaly scan was staring at from me across the weeks. It kept waving at me and reminding me that we weren’t out of the woods yet. The successful 12-week scan (and the follow up reassurance scan after our 14-week scare) could never have fully reassured us because everything had looked awesome at Hero’s 12-week scan too. But if limbs were all good, and Hero was all healthy, what else could there be to fear?

It took a while to realise that I was just frightened of being afraid again. I was no longer under the illusion that the 20-week scan was meant to be a beautiful experience. I knew now that I could be utterly blindsided by something I’d never even imagined, let alone foreseen. I knew that we could be thrown into a whirlwind of medical appointments, tests and consultations and still not get any nearer to an answer. I knew we could be told we might have to make the heart breaking decision to end our child’s life before it had even begun.

I was terrified of the unknown happening again. It never had anything to do with hands or limbs. Ever since we’ve had Hero I get anxious about other people’s 20-week scans too; I have to hear if it all went well. I’m nervous for them, even if they’re feeling nothing but excitement and joy themselves, because I know now what the possibilities are.

The night before our second 20-week scan I barely slept. The weeks and days before I just wanted time to pass. I wanted to be there, I wanted to have it done and have it over with. Then, eventually, I was lying on the couch (the same one where we’d had Hero’s 20-week scan) and the cold jelly was on my stomach. I’d never cried during any other scan but I could hardly breath during this one and my eyes were watering from the moment we’d stepped into the waiting room.

The sonographer was wonderful. She’d seen our notes and she happily talked us through everything – again, taking extra time to check on those hands! We were silent this time, no excited gibbering. We wanted her to have total space to concentrate on what needed to be done. Every time she checked something off her list I felt I could breath a tiny bit more.

There was an awful moment – it felt like hours – where she frowned and concentrated on the heart for far longer than ideal. We could tell she was worried. We moved positions (not easy with an arm in plaster up to the elbow!) and rolled around trying to find a better shot of Baby. I just burst into tears, convinced it was happening all over again. Here we go! Until at last, after what felt like an age, she let out a massive sigh of relief and told us all looked well.

She showed us Baby #2 dancing about on the screen, clearly incredibly relieved not to have had to be the bearer of bad news, gave us a slip saying all was well and sent us merrily on our way.

 

Surreal: No more appointments!

We stopped outside the scan room looking at our photo. I cried again. I knew I’d been stressed, but I hadn’t realised how much until the axe had been removed from above our heads. We looked around a bit and had a moment of ‘what on earth do we do now?’ Were we meant to just… go home?

Last time we’d been in this position we’d been whisked away to another department within moments of leaving the room. We’d started getting appointment letter after appointment letter through the post and we were poked and prodded and scanned to within an inch of our lives. The rest of the pregnancy went by in a whirlwind, with time passing in little dollops of waiting between each new appointment.

At home, this time around, I turned to Google and it looks like I don’t ‘have’ to see anyone at all for another two months.  It was mind blowing. We were just to be left to our own devices! No scans. No check ups. No specialists. All was well.

We do have one consultant appointment lined up for the interim; following on from the last pregnancy and Hero’s dramatic arrival I totally understand why they want to see us. But I don’t think we’ll be returning to the olden days of our first pregnancy. I think/hope the consultant will see us, confirm everything is ok and send us on our way.

It took a few days of getting used to the idea that this was it and that all was well. It took a while for all the intense stress of the past twenty weeks to work its way out of my system. But here we are. And we are so darn excited it’s unbelievable. I never had a moment last time to just enjoy being pregnant. I never truly relaxed until Hero was in my arms and perhaps not even then right away – thanks to on-going very low weight gain, she was well over a year old before I really felt confident.

But I’m here now, getting steadily fatter, being kicked enthusiastically from within, experiencing the pregnancy I’d assumed we’d have last time and feeling incredibly grateful and blessed for every moment. Without all the hospital visits and appointments of last time we have months ahead of us now to enjoy every moment of ‘Hero and Us’ time before this wonderful new interloper arrives!

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Before 3 become 4!

A letter to when I was a limb-difference learner

A letter to when I was a limb-difference learner

As Limb Difference Awareness Month has ended, so too has another chapter of my life. But endings are not necessarily sad things. To quote a popular cliché, ‘when one door closes, another door opens’, and this particular opening door is one most welcome.

April has been a big month in the Though She Be But Little household. Our lucky fin baby has gone from crawling, to standing to thinking about trying to walk (albeit with a lot of wobbling and support) and, perhaps the biggest of all, she’s also learnt how to hold objects with her little hand. These massive milestones have closed the door on a chapter that, for me, started just over a year ago. It was a chapter I never saw coming and it was a chapter of worry.

All these wonderful changes have got me thinking back to the old me; large, pregnant and beside herself with fears and emotions she didn’t even understand. Now that I’m here, I wish I could reach back over the past year, back to the Spring of 2016, and tell my old self some things. Some things I know that she wouldn’t be ready to hear just then, but that she would be ready one day, in the not too distant future.

  1. You won’t regret your choices.

For the rest of your pregnancy, you won’t shake the notion that there could be something else wrong with your baby, something they haven’t picked up on the endless scans. All these scans (you’ll lose count of how many by the end, but it’ll be somewhere near 20) tell you that the doctors think there might be something else to find. Each time you go for another scan the news will be different, one day she’ll be too small, one day she’ll be fine, one day her arm will be tiny, the next day it won’t. Worst of all, these scans are happening because you rejected one invasive but conclusive test. When you’ve been told your baby is 1 in 32,000, the 1 in 100 odds of a miscarriage caused by an amnio test seem frighteningly high. Despite all the subsequent investigations, scans and consultant visits, you won’t regret not having that test. You know it could have taken away much of your stress just like that, but right from the moment you first saw her jumping about on the screen, your baby’s safety was and always will be worth far more than your own fear and worry. You are right to follow your instincts, they are the best and most comprehensive parenting resource you’ll ever have.

  1. The emotions you’re feeling now are ok. 

You’re new to this whole limb difference thing, you’ve never even seen anyone with a limb difference before. You’re about as limb different unaware as it’s possible to be. You don’t know what’s in store. Your mind is full of all the other ‘what ifs’ and near misses. You’re terrified that your daughter will struggle through life. You’re devastated to think of the challenges she might face, both socially and physically. And yet you spend so much time feeling guilty for how you feel. Compounded over and over by well-meaning comments. They’re trying to make light of the situation for you, but you’ll feel sometimes that your emotions are being undermined. You will come to understand all of the things they’re saying to you, but you’re not quite ready yet. You’ll learn that the only people who can really relate to you are other parents in the limb different community. Find them, join them and talk to them; they will understand what you are going through better than you do yourself right now (you can check out our links page for some fantastic resources and blogs). You’ll keep comparing your own worries to those of others. You certainly know how much worse it could have been. You’ll worry that because your problems aren’t as severe as others that they’re not worth a damn. Let me tell you now, even though you’ll carry on doing it, that you should not compare. Some people have things far worse, challenges far greater and higher mountains to scale. Likewise, some have things a little easier. Neither side of the equation invalidates how you’re feeling right now. Right now it’s ok for you to fear the unknown and for you to be a little heart broken for your baby. You’ll trawl the Internet for information and you won’t be ready just now to hear the positive news from parents all around the world, but you will be soon.

  1. Telling people is absolutely the right thing to do.

You’ve agonised whether to ‘announce’ to your friends and family that your baby will be born with a difference. Right now it feels like the biggest thing in the world to you. Maybe to others it’s not so huge, even to you, just a year from now, her difference will hardly matter. But right now, at this very moment, it’s pretty huge. Telling people will end up giving you the chance to celebrate her birth without worrying about their reactions. It’ll ease your anxiety once people know. When she’s born, all you’ll see on their faces will be joy and love and happiness. Telling people now will allow you to make the most of those precious months of knowledge that you were given. So many are shocked to discover their baby’s difference at birth. You’ve been given the gift of knowledge; use it in whichever way is right for you.

  1. When you get to meet her for the first time you’ll relax, but only a little bit. 

You will be so utterly relieved in the wake of her birth that her time in intensive care will not stress you out as much as you’d expect. You’ll know that she’s going to be ok. You’ll know she’s safe. You’ll know she’ll be well. However, all that relief and joy won’t quite mask that residual underlying fear. You’ll still worry. You’ll hold your breath every time you spot another consultant around her cot and you’ll chew on your nails whenever you receive a hospital appointment for her in those early months. You’ll feel fraught when she refuses to gain weight and the consultants are looming yet again. You’ll still bristle a bit when people make light of her difference. You’ll still be caught unawares by the little break in your heart when she tries to hold your finger with a hand that isn’t there, or when you see her try to reach out for a second toy only to give up in disappointment. You’ll feel that way for a little while yet, but not forever.

  1. She will blow you away. Every single day she will make you proud. 

Once she’s home, you’ll watch her every movement, you’ll agonise over how she is using her little hand. You’ll fret that she isn’t using it. You’ll stress. You’ll encourage. You’ll cheer. You’ll cry. Then one day, around about a year from now, all that will change. Around about a year from now she’ll climb up onto her knees and she’ll crawl. She might have a few bruises on her head where she’s toppled over her little hand. But you know what, she toppled over and then she got up. Again and again, she got up. This moment will close the chapter on your worry. It’ll close the chapter on your fears for her future and there you will be, sitting beside those other proud parents of limb different kids, and you’ll know in your heart of hearts that she’s going to be ok. You’ll at last understand what they’ve been telling you all along. That one simple act of moving herself forward across the floor, of getting bored almost instantly of the crawl and pulling her self up to stand instead, will change your world. Those two little milestones will shout and scream to you that there is simply nothing this kid won’t be able to do. She wants to play hockey, like her Dad? She’ll make that happen. She wants to turn cartwheels across the floor? No problem. She’ll find a way with your help if need be, but she’ll probably neither need nor want it. You’ll turn around one time and there she’ll be, sat on the floor, holding onto two toys. Two of them. One will be clamped in her fist the other tucked against her body with her little hand. And she’ll have no idea how intense and all consuming your pride is, how immense your relief and how great your joy, at seeing this one seemingly insignificant act. She’s showing and telling you, with every new thing she learns, that she is going to be A-Ok and that it’s time for you to stop worrying.

Listen to her: she’s right.

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One hand, two toys!

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Celebrating the Mini Milestones

This week has been a week of mini milestones in the Though She Be But Little camp.

Tomorrow our pregnancy hits 37 Weeks. That is officially full-term in baby language, so our little lady is free to make her grand entrance any time from now and we’ll be over the moon when she does!

Today was also our last ever appointment with our foetal medicine consultant. A pretty momentous occasion. I’ve lost count of how many scans we’ve had since our 20-week routine scan way back in March, but I’m pretty sure it’s reaching the high teens, if not well into the twenties. It was an odd feeling to say goodbye to her today, knowing that post-natal care and investigations will be handled by a whole different raft of professionals. It felt like something big, a huge achievement, like both we and Baby have graduated somehow. The scan showed that Baby is growing well, and despite my sporadic lack of acceptance, that her right hand definitely isn’t there. The sonographer said again that there might be some kind of digit, but without much conviction. I’m not sure if they just say that because they think that’s what I’m wanting to hear, but we don’t have long to wait to find out now.

We got a great shot of her chubby face. I have to admit I was the only one in the room who couldn’t see it at first, until I realised that I was looking for a face a whole lot smaller than the one on the screen. I can’t believe how much she’s grown and I can’t wait to meet her for real, rather than seeing the sonographic equivalent of her face pressed against the glass!

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Don’t panic if you don’t see it right away, I didn’t and I’m her mum!

This week has also seen a turn about in my mind. Throughout the pregnancy, exacerbated but not caused by the complications, I have suffered with severe anxiety and depression. An intense fear of birth (not helpful when you’re pregnant) has raised it’s ugly head time and time again and it’s only through reading as many Hypnobirthing books as I can get my hands on, combined with support from my specialist midwife and my foetal medicine consultant, that I’ve managed to create a positive ideal in my mind. It was my first midwife appointment today, after 9 months of appointments, where I was able to speak confidently and with positivity about my impending birth experience. Daily meditation and banning myself from negative readings, attitudes and thoughts have both played a huge part. Gaining the self-confidence to know for myself what information I do and don’t need and what birthing attitudes are simply detrimental to my mindset has been invaluable.

Another event that put the stoppers on the train tracks of my negativity was a baby shower. My friends and family came together for the most amazing day and threw me a baby shower in the stunning Tudor manor house of Kentwell. It was absolutely tipping it down, monsoon levels of rain, but underneath that awning, surrounded by my friends, it couldn’t have been brighter. One of the symptoms of depression I have suffered with has been a sense of isolation, of inherently being unlovable. These sensations are incredibly difficult to maintain when the people that mean the most rally around you like that. I’ve still not managed to adequately thank them for everything they’ve done and I’m not even sure they’re aware just what a significant impact that day has had on me. The whole weekend was topped off when I got home the following day to find that Ben, he of the inappropriate humour, had called in the troops (his brother, sister-in-law and my cousin) to decorate the bathroom, the nursery and to get the living room prepped for the decorators after a well timed bathroom disaster a few months ago. The entire weekend served to spring board me up onto a more positive level that everyone, from my husband to my midwife, has noticed. I just wish I had stronger words than ‘thank you’ to offer everyone involved!

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The Baby Shower Crew (minus 2!)
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The mother of all cakes!

With Baby’s nursery finally complete we now have a room to put all her things in. Knowing that, should she arrive tomorrow, we’d be able to function has been incredibly cathartic and made it all really very real. I’ve been living in a surreal bubble of disbelief for the past months. I know I’m pregnant (it’s difficult not to with her booting me wholeheartedly in the ribs all day) but the idea of actually having a baby has been illusive. Now I find myself drifting into the nursery at every opportunity and it’s the one place in the house I feel calm and at peace –I figure that’s a very good sign! I’ve been practicing my daily meditation and Hypnobirthing mindfulness sat on my birthing ball in there each day. With any luck, some of that serenity will linger in the room and she’ll sleep like a dream. One can always hope!

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The week is still only half way through but the icing on the top of the cake will come on Sunday, when my hockey team captain, Kimberley, hits the streets of London to run the Vitality 10k to raise money for Reach. She’s been training incredibly hard, no matter the weather – not even letting trivial things such as holidays interrupt her! Her amazing effort has seen us raise £380 for Reach so far, a total that continues to rise.

All money raised goes directly to Reach – a charity offering invaluable support and guidance to around 60 new families each year who’s child is born with an upper limb difference, or a ‘diffability‘ as I now like to call it.

  • £25 – Pays for a comprehensive Welcome Information Pack for one family. (Our pack was an invaluable source of support to me a few months ago – thank you so much!)
  • £30 – Covers the hire of a one-handed recorder for one year. (Worries about whether Baby would be able to learn a musical instrument have proved to be unfounded!)
  • £50 – Buys gadgets to help a promising swimmer to train through our Bursary.
  • £75 – Allows a child to spend one day at Reach Activity Week.
  • £100 – Is the cost of one workshop leader at the family weekend, to provide the children with fun, safe and interesting activities.
  • £250 – Pays for a child aged 10 -18yrs to attend the residential Reach Activity Week – an invaluable source of friendship, acceptance and fun.
  • £500 – Pays for a Reach member to have essential adaptations to their car so they can learn to drive.

A huge and heartfelt thank you to everyone who has donated so far and supported Kimberley throughout her training. Also a massive

THANK YOU

to Kimberley, for all of her hard work, dedication and training towards raising such an awesome sum of money!

We’re wishing her the best of luck (and weather!) on Sunday as she pounds the streets to ‪#‎Runthecapital‬.

 

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‪#‎ItsAbilityNotDisabilityThatMatters‬

 

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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