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