It is not just a hand

It is not just a hand

Over this past week I’ve had three people say to me “oh well, it’s just a hand”, when they’ve met Hero for the first time. Don’t get me wrong, I’ve met some wonderful, inquisitive and kind people too, who have somehow managed to convey just how perfectly OK Hero will be without her right hand, without dismissing it entirely.

I know, from the bottom of my heart, that she will be just fine. That she is just fine. I am acutely aware how much worse off people can be. I don’t worry about any of the things that terrified me during pregnancy. I don’t mourn for her loss anymore. I just see before her a world of possibilities. Given the chance, I wouldn’t even go back and change it.

But it is not just a hand.

It might well be ‘just a hand’ to you, who is enjoying the full use of both of yours. It might well be ‘just a hand’ to me some of the time. But to some people, and to me as well on the rare occasion, it’s a barrier that our little ones must overcome.

It’s looking at little kids struggling to do up their shirt buttons, tie their laces, open a bottle top and wondering how Hero will achieve that. It’s not a case of if, but simply of how. It is knowing that whatever she wears, buys or does in order to fit in, she’ll always be a bit different. She might love being different. I hope she loves being different. I do. But it took me a good many years to get to that happy place and deep down, there will always be a tiny part of me that secretly wants to belong.

It might be a small disability. I might well be grateful every single day that it isn’t the ‘something worse’ the doctors threatened. It might be a minor difference on an utterly perfect baby.

But it is not just a hand.


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Follow the link below and select the “Health and Social Care + Parenting” category.

http://www.blogawardsuk.co.uk/ukba2017/entries/thoughshebebutlittle2016

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Perpetuating the myth

Perpetuating the myth

I had a bit of a parenting epiphany the other day. There I was, bobbing about in the pool for our second swimming lesson, trying to get Hero to hold onto the side. It was going well; I had lifted her good hand up and she was gripping onto the tiles like a pro. Meanwhile her little arm sat, where it often does, clamped to her side. I was just going with it, I wasn’t encouraging her to use it at all.

As she’s started to develop coordination skills, reaching out for toys (and my glasses, amongst other things!) I’ve been watching as she keeps her little arm by her side, as if it’s tucked away into an invisible pocket.

On the occasions she does use it, usually to capture something between her arms and bring it inevitably to her gaping maw, I’m sure to clap and give her plenty of praise. But do I ever really encourage her to use it?

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The Wookie reaches out…

Thinking back, still bobbing in the pool and hanging on to the side, I realised that I too seemed to favour her “good” hand. Whenever I offer her toys or something to flail about wildly, I always offer it to her left hand. All of a sudden this seems a little remiss, a little like I’m perpetuating her reluctance to use her right arm.

Her right arm is the furthest thing from useless. So why then, as I stood in the pool with her frilly swim-suited body balanced on my knee, had I not immediately lifted her right arm and held that to the side as well? Of course, she couldn’t grip on with it, but she could definitely rest her arm on the edge for extra support.

When I hand over her favourite circular rattle, why don’t I slip it over her right arm like a bracelet instead of always putting it in her left? Why don’t I dangle toys that side so that she can learn to reach out with her right arm too?

She knows somehow that there is something not quite the same about her little right hand. But if I continue to show the same preference as she does I fear I could end up mirroring and perpetuating her reluctance to use it. If I want to see her be the best that she can be, then I need to start off by showing her all that she can do.

Show her that she can reach.

Show her that she can bash and wallop.

Show her that she can flail it wildly and knock things over.

Next time we’re in the pool I’ll be sure to put the floating ball in front of her right arm and to help her reach with it onto the side. Her little hand might well be the perfect dummy (it’s never out of her mouth when she’s tired!) but it’s the perfect tool for plenty of other things as well and it’s high time we both realised that.

 


If you’ve enjoyed following our journey, please take a moment to vote for us in the UK Blog Awards 2017!

Follow the link below and select the “Health and Social Care + Parenting” category.

http://www.blogawardsuk.co.uk/ukba2017/entries/thoughshebebutlittle2016

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Out of the Mouths of Babes

Out of the Mouths of Babes

Kids can be so cruel.

As a primary teacher at an all-girls school it’s a phrase I hear often. Sure, kids can be cruel sometimes. But in my experience more often they are honest and open and full of wide-eyed care.

Despite this I was still a bit nervous when I took Hero into school to meet my students last week. I’d started my maternity leave early, half way through the summer term, so my girls knew that things hadn’t been entirely straightforward with the pregnancy. I was really keen for them to see that everything was all ok.

I’d decided not to prepare the girls before I took Hero in to meet them. Their gasps of delight and joy at seeing her were spectacular. Their excitement was punctuated after a few moments by the startled question: “What’s happened to her hand?”

And there it was, the elephant in the room evaporated instantly in a poof of smoke. The elephant that lingers so often when adults are taken by surprise. After the first girls asked, the others started to notice her lucky fin too and repeated the question.

I explained that we’d found out about her paw while she was still in my tummy and that sometimes things just don’t develop the way we’d expect them to. That’s life, that’s just nature.

“Will it grow?”

“Are those fingers?”

“Does it move?”

It was so wonderfully refreshing to be asked questions and to answer without any awkwardness. As soon as they realised that it was all ok; that I was OK and that Hero was OK, their attitude to her lucky fin changed from curiosity and concern to wonder and joy.

“Can I touch it?”

“It’s so cute!”

“I love it; it looks like a teddy bear’s paw!”

“She has teeny tiny nails! She’ll be able to paint them when she’s older!”

One of my girls, who is just nine years old, looked up at me as she held onto Hero’s lucky fin and said with such honesty and integrity: “She is such a special little girl! A real one of a kind.”

Often the difference between children and adults is that children aren’t afraid to ask. And if you’re not afraid to ask then I’m not afraid to answer. Of course I can’t speak for any other parents with a limb-different child, or for the children themselves, but for me I welcome the questions. There’s no such thing as a silly question. Once they’re asked, once we’ve said farewell to that elephant, we can get on to talking about other things.

Being different is nothing to be ashamed of and in approaching differences with curiosity we can open our mind to a whole new world. My girls showed me that last week as they sent Hero and I on our way, our hearts bursting with happiness.

 

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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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

 

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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