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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Kimberley Reaches the Finish Line!

What a day!

Kimberley ran @TheBritish10k in London today, non stop, coming in an bloomin’ brilliant 6177 out of 11257! All her hard work has raised a staggering £460 online already!

Amazing Job Kimberly and a huge well done to you and your support crew on the day!

‪#‎itsabilitynotdisabilitythatmatters

I can’t thank Kimberley enough for what she’s done this weekend and over the past months. What a HUGE amount of money to raise for such an invaluable charity to those affected by upper limb diffabilities!

@ReachCharity ‪#‎Runthecapital‬

Can we bump it up to the £500 milestone? Thank you so much to everyone who has generously donated, some multiple times, already!

https://www.justgiving.com/fundraising/reachforthefinishline

 

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.

Reach For the Finish Line

A couple of weeks after our 20-week scan our welcome pack from Reach – The Association for Children with Upper Limb Deficiency arrived.

I leafed through a few pages before bursting into tears. At the time I hadn’t quite reached acceptance. The idea that I would likely be affiliated with this charity for the rest of my life was terrifying. I’ve been lucky enough throughout my life to have never needed a charity before and my first experience was shaping up to be a life-long one.

Since then, after countless members selflessly reached out to me in emails and in messages offering reassurance, a few words of support, an avenue of communication, I’ve realised how utterly wrong I was.

I couldn’t be prouder and happier to be part of the Reach community, albeit as a total newbie to the fold. I can only hope that in years to come I’ll be able to reach out to new members in the way others did for me. Such a simple gesture; such a massive impact.

Time to pay it all forward.

Our own Reach Baby isn’t with us yet and isn’t due to make her grand entrance for another 9 weeks, but I don’t think it’s ever too soon to say thank you. In my increasingly ungainly pregnant state, my similarity to the Rudstone Venus becoming ever more uncanny (thank you to my darling Ben for the comparison), I didn’t think I would be much cop at running the London Vitality 10k on the 10th July myself.

I put a post out on Facebook wondering if anyone else out there fancied the challenge of the 10k to raise funds for Reach. My hockey captain from Ross Ladies, Kim, jumped at the chance. We’ve not known each other for all that long (I only joined the club last Autumn) and her support, motivation and openness has already been amazing.

 

 

If you’d like to support Kim (and me in my armchair role!) in the name of our Reach Baby and the other amazing kids like her, please visit out Just Giving page:  www.justgiving.com/fundraising/reachforthefinishline.

You can also track Kim’s progress on our Facebook page: www.facebook.com/thoughshebebutlittle2016

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.