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.

I dreamed a dream

As soon as we received the news that our baby was going to be born without a right hand, I knew that I’d seen it all before.

A dream, from a few nights before, resurfaced with vivid clarity before the ultrasound had even been completed.

I’d been holding my laughing baby girl and she was missing her hand. There was simply a clean stump at the end. It had been a fleeting dream, one I had barely acknowledged, pinning it down to just one of those crazy pregnancy visions (of which I had been having many).

I knew then, even if the consultants weren’t sure, that she was a girl. I knew too, in the bottom of my heart that my daughter would be ok. In fact, she’d be more than ok; she’d be a healthy, happy and energetic young lady, strong willed and passionate.

However, The dream and that underlying surety certainly did nothing to discount our fears over the following two weeks as we awaited more answers.

The experience has given me a stronger understanding and respect for my intuition, a tiny voice I’d never listened to before. It was a memo to me that as I embark on motherhood for the first time, my gut instincts and intuitions are there to protect my baby and I. They’re those tiny voices in the back of your mind, the ones we discount first, the ones we reject. Yet they’re only there to help, to look out for us.

After all this, I’m planning to make a promise to myself to listen, first and foremost, to myself before I start listening to the outside world.

Let’s start at the very beginning

Let’s start at the very beginning. It’s a very good place to start, or so I’m told.

My husband and I are expecting our first child; we could not be happier, more excited or more filled with excitement for the future.

Despite our age, we are both of us still children ourselves at heart and the idea of having a little human, a little piece of us, to share all our bubbling enthusiasm with is something we’ve always dreamt of.

The first trimester was rotten (why is it that no one ever warns you about that?) It was dogged with 24/7 nausea and vomiting for about two months. It was characterised by impressive bloating, which left me looking five months pregnant and sheepishly buying my first maternity trousers at 7 weeks gone.

It was marked by the 12-week scan, by my total inability to live up to everyone’s expectations that I should cry with joy. The scan was nothing to me, if not a reminder that I had not and seemingly could not connect with my baby.

It was pursued to by an almost crippling fear of giving birth, a fear, which, left unaddressed and subconscious saw me diagnosed with pre-natal depression. It saw me assigned a new midwife, trained to deal with, well, with ladies like me. We talked birth plans. We talked options. And between her and my stalwart counsellor, we came through that bleak patch.

Cue the golden month. That glorious four weeks; my bump was showing and I was glowing. My energy was back. My fear was dampened. The toilet was no longer my closest companion.

We talked baby names, we talk nursery decorations, we talked about what our little lady was going to be like.

We were bursting with excitement when the 20-week scan came along. Out of the woods of the first trimester, this was going to be the one. We’d find out whether my hunch that I was having a daughter was correct. We’d finally see her fully, more than just the cartoon-like blob of the 12-week scan.

 

The 20-Week Scan

We arrived (my bladder fit to burst after a morning spent dedicated to my water bottle). The Sonographer could see our excitement and reminded us that she needed to be left alone to concentrate so that she could carry out all the necessary checks on our little one. We held hands and grinned at each other as we saw the little one bopping and jigging on the screen.

We couldn’t tell from our uneducated view, that she was curled up like a pretzel, her head hidden down in my pelvis. I was dispatched to the lavatory and we came back for a second attempt.

Still no luck; baby was moving like a trooper, but not in the way our Sonographer wanted. Off we were sent for a walk around the hospital, for a few glasses of water. At the time I was so touched that they were trying so hard to accommodated us, I had after all explained that getting time off wasn’t easy for my husband and that I’d probably have to come back alone if we couldn’t complete the scan today. I’ve since heard that many women have been banished from the room for ‘The Walk’ after an anomaly has been spotted.

When we returned the technician looked quite unhappy. I was worried that we’d walked for too long and had outstayed our welcome. Hindsight is a wonderful thing.

The third scan was equally as unsuccessful in yielding results. My poor bladder had been up and down like a yoyo and it didn’t seem to make a blind bit of difference to the little wriggling thing in my belly.

The Sonographer hung up her tools, defeated. Then turned to us and told us that she had “a concern”. Baby appeared to be missing her right hand. The left, it turned out, was also proving difficult to pin down.

That’s ok. Sure it is. I had thought for a minute it was going to be something serious. But a missing hand and an unformed limb? Sure, no problem. My husband was white.

We were not to be sent back to work, instead we were dispatched immediately to the Fetal Medicine Unit (our favourite anagram at the time, as close as it is to the terribly appropriate FML).

They sat us in a family counselling room and brought us tissues. I realised then that they think this is a big deal. Then I cried. My husband did too.

The problem, the FMU midwife (sent to deal with us as the consultant was on annual leave) explained to us in no uncertain terms, was that the Sonographer had been unable to scan baby’s face, brain or heart due to her difficult position.

(We’d come out of our shock long enough to ask about the gender. If we were going to process what was to come, we wanted her to have an identity. There were “no boy parts” they said.)

This, combined with the lack of any obvious causes for a missing hand (i.e. amniotic bands), had led them to believe that there was a possibility of a far more serious genetic problem. A problem that could result in severe metal disability and severe limitations on her quality of life not to mention the likelihood of this occurring in future pregnancies being a mere 4 to 1. The midwife brought up the issue of the legal 24-week abortion cut off limit.

We were referred to another hospital, an hour away, whose consultants are some of the top FMU doctors in the country. Today was Thursday. Our appointment would be on the following Tuesday.

The speed with which they referred us was simultaneously reassuring and terrifying. They were taking this seriously. Seriously enough for us to feel in capable hands, yet a little too seriously for our peace of mind.

As the weekend passed in a bit of a blur the shock began to crack and the fears started to sink in. The worst-case scenarios bounced around my head like sugar plum fairies. We could hardly eat. We barely slept.

The idea of having to even consider a termination, having just spent the day bonding with my daughter, watching her dance and punch about in my tummy, was the most unbearable contemplation I’ve ever had to make. She was no longer an anonymous fetus. She was no longer just a swelling in my belly. She was my daughter. She was feisty. She was stubborn. She was awkward. She was little, but she was fierce.