One-handed signing in a two-handed world

One-handed signing in a two-handed world

There is no better example of the emotional journey we’ve been on over the last two years, since our daughter was born without her right hand, than looking at our progress through our baby signing classes.

I started attending Sing and Sign classes with Hero when she was around 8 months old. It’s a superb baby and toddler class, which develops the use of hand signs and gestures as a means to supporting the development of a child’s speech and vocabulary. Hero is a bit of a late talker and so we’ve found the signs an invaluable and fun means of communicating with her and her with us.

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“What’s that?”

 

Sitting in the spotlight

And yet, when we first started I really struggled with the classes. As you can imagine, the class is all about hands and how we use them. The opening song at every class called for the children to hold up their hands and wiggle their fingers. Back then, when Hero was younger and my feelings were all a little more raw, I used to get a twinge of heartache every single time.

Back then I felt like the song lyrics shone a little spot light on Hero and I, I felt like it drew attention to her difference and I’d find myself looking down at the floor and trying to ignore those feelings of being in a goldfish bowl. All feelings I strongly suspect many parents of a child with a difference can understand and empathise with. Also feelings that, I’m sure, weren’t entirely true (see my post about feeling hypervigilant). I don’t really think anyone was looking at us, maybe they were at first, maybe they weren’t. But the reality doesn’t shake that sense of insecurity you might feel inside from time to time as you come to terms with a child’s difference.

However, as time wore on and we kept going to classes I started to adjust. Many of my blog posts have highlighted our journey from worried and hyper-sensitive to accepting and confident; it doesn’t occur to me now that Hero is anything other than one of the Sing and Sign crew. I don’t even notice the words and the lyrics anymore, the ones that at first felt so painfully obvious.

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“Where is it?”

 

Two-handed signs for a two-handed world

Another little hurdle I felt that we faced was in making and expressing the signs accurately when Hero was missing half the tools to do so. Like many things in life British Sign Language, and other signing variants, are designed for a two-handed world.

At first adapting the hand signs, while simple, still sent these feelings of sensitivity bubbling up in me. Sure, we can adapt the signs, but it felt a bit rotten that we had to. Those feelings say a lot more about my own emotional journey as a parent of a child with a limb difference than they do about any real challenges we may have faced using the signs in class!

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“Ouch!”

When I finally plucked up the courage to speak to our class leader, Beccy, about how I felt using and adapting the signs she was nothing but reassuring that any changes we made would not remotely be a problem.

“At Sing and Sign, we don’t teach sign language as such, we teach communication. Communicating through sign with your pre-verbal little one is an amazing window into their worlds. It doesn’t actually matter what signs or gestures you use and this makes signing possible for everyone!” – Beccy, Sing and Sign Chepstow Newport Lydney Monmouth

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“Baby” 

Unconscious little changes

Up until our second term the signs had been pretty easy to adapt and Hero started doing it naturally and unconsciously – not realising she had any difference at all of course. However, when we started learning the British Sign Language alphabet I began to foresee some possible issues. A number of the letter signs require the use of fingers from both hands, something that’s simply impossible when you have only five.

Exactly as I’d done after being told of her difference at our twenty-week scan, I took to the Internet and researched how to use BSL with one hand. I couldn’t find a lot to help me guide Hero. While limb difference is the norm for us, it turns out that it’s not so common that there is an official one-handed signing system! However, I was eventually directed to a young lady’s Instagram account and YouTube videos. Just like Hero,  Elizabeth had been born without one of her hands and despite this has taken up and excelled at British Sign Language.

She had been kind enough to share videos of her one-hand-adapted signing online. She bravely put herself out there and was keen to test how well she was being understood.  She’s been reassured by her viewers and followers that, despite using her limbs slightly differently to make the signs, she was easily and completely understood. I loved trawling through Elizabeth’s videos and I started to use some of her adaptations with Hero in class.

 

 

“I’m always reassuring parents that they don’t need to know the official sign for something. Make it up! That’s part of the fun! Babies and toddlers quite often adapt the signs that you show them anyway and may even progress to making up their own. If signs need to be changed slightly to accommodate differences, then that’s no problem. Consistency is the key!”- Beccy, Sing and Sign Chepstow Newport Lydney Monmouth

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“Rabbit”

Offering reassurance and finding some of my own

When I set out to write this post I was hoping to reassure other parents who might be nervous about attending baby groups or similar style classes with their limb-different little one, having received numerous messages expressing that fear. Yet, as I began writing, I realised that as well as (hopefully) reassuring others, an exploration of our baby signing journey has shown me just how much change there has been in my own mindset, from the worrisome early days when Hero was just months old to now as I wrangle our energetic, tenacious and entirely unstoppable two year old!

From our very first term when I felt self-conscious and acutely different in our two-handed world, Hero now totally rocks these differentiated signs. They were designed for communication and have given Hero and I a fantastic means to understand one another. We’ve been able to have entire conversations using only our hands before she’d even developed the vocabulary to express the same things out loud.

I’ve gone from self-consciousness and a little fearful to confident and certain and, as I’ve said time and time again, it’s been Hero who’s enabled that change in me. It didn’t matter how many times someone told me she would be just fine, I could never quite let the worries go until she started showing me for herself. She didn’t wonder if she should do the signs or not, she didn’t question whether they were different to the other kids’ signs or whether they even made sense. She just went ahead and did it – exactly as she approaches everything in life.

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“More!”

Identifying the difference: a new era

Identifying the difference: a new era

Something happened this weekend that, while seemingly insignificant, to me feels like a huge leap in to thus-far unchartered territory. It feels like a loss of innocence and naivety, which I was hoping to cling to for a little longer.

Hero turned around to me, entirely out of the blue, and pointed to her little hand saying, “baby”. She then tapped her left hand and said, “mummy”.

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Introducing Baby Hand and Mummy Hand

Now, in her world at the moment every single thing fits into the Mummy, Daddy or Baby categories. If it’s small, it’s a baby one, if it’s big its either Mummy or Daddy. This categorisation will apply to everything and anything from leaves, to stones, to sticks, to animals, cars and people. It can be a little embarrassing as she shouts “Daddy!” at almost every random male we pass. “Yes, Hero, that might well be a daddy. It’s not your daddy though!”

A growing awareness

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The 40th Reach AGM and Family Weekend

It’s no coincidence that Hero’s announcement about her hands came when it did, as we spent the weekend with Reach families from across the country celebrating the charity’s 40th AGM and Family Weekend. While the adults laughed and cried our way through the conference, packed full of inspirational and fascinating people including speakers from the fields of specialist hand surgery, neuroplasticity research and TV comedy, Hero was in the Reach crèche run by the ever-awesome team at Freedom Childcare.

I wrote last year about what an odd experience it is dropping Hero off at the Reach crèche. At any other childcare facility or toddler group, experience has told me that she will stand out from the crowd and that, whatever she’s doing, she’ll be noticed (the loss of anonymity that having a physical difference brings was brought up in one of the conference talks, to many understanding nods from the delegates.). But at the Reach family weekend things are different, she joins a whole cohort of limb-different kids and, for a rare day, she’s not going to stand out. She’s one of them and she fits right in.

An unsurprising surprise

While the adults are all learning how our children’s brains might be compensating for their missing limbs and are weeping our way through tales of victories and success from across the limb-different community, it probably shouldn’t come as a surprise that the children are discussing their differences too.

Yet despite this, despite spending the weekend surrounded by limb differences, her pronouncement still came as a shock to me and, I won’t lie, a bit of a heart aching blow. Since her birth, Hero has shown us that her brain knows there’s a difference in her hands – despite what well-wishers might tell us. We’ve watched her try to use her right hand as if it were a fully functioning, five-fingered limb. But what she’s not been aware of is her own difference compared to those around her.

She has never looked at her hands and compared them to her peers, or even to ours as parents. She’s been blissfully, naively unaware that there is anything about her that is different from anyone else.  I’ve said in the past that I think, in some ways, these years have been golden ones. These are the years where her confidence can’t be damaged by her difference, these have been the years when she doesn’t notice if someone is staring or asking questions. These are the years where, to her eyes, she unconditionally fits in.

Her identification of her hands as a ‘baby’ and a ‘mummy’ hand feels like the beginning of the end of those golden years, like the start of something new. It feels a little like her innocence at the world and its judgements are starting to erode away and she will be left more exposed and vulnerable to people’s judgements and opinions.

Please don’t get me wrong, I don’t believe that the end of these golden years of innocence means that her life will inevitably be difficult and a hard from now on – far from it. It’s simply that, over the past years my concerns for Hero have changed from things I thought she wouldn’t be able to do (what a joke!) to how she will cope socially with her difference. What will it be like when she starts school? How will her nursery help her to deal with questions or attention from other kids? What will happen to her self-esteem when she first acknowledges a rude stare or unkind comment?

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Rugby? No problem!

Their hard-earned confidence

The adult Reach members who speak at our family weekends are inspirational, truly. They are athletes, professionals, actors, comedians… they are successful, they are confident in their own bodies. But many of them tell the same story; they tell of the troughs they fell into, they tell of the hurdles they had to overcome in order to be – and to love – who they are today. They tell of the insecurity, and of the fear they battled through to win their hard-earned confidence.

Suddenly, her identification of her difference, while representing an exciting leap in her understanding and awareness, also feels like an opening of a door or a shedding of her armour that will leave her more exposed to knocks in her currently unshakable confidence.

As parents we would do anything and everything to ensure our child felt safe, confident and loved. Yet a physical difference is something that we simply can’t do anything about. If she’s struggling in school I can get her extra help, if she’s struggling with friendships I can support her in building bridges. But I can’t give her a hand. I can’t take away the one difference that she might want to be rid of in the future. I can’t answer the inevitable question of, “when will my little hand grow?” with anything other than a crushing finality. I can answer sensitively, supportively and compassionately even, but not untruthfully.

So for now, as we embark upon the terrible twos and navigate emotions she never even knew existed before, both she and her parents are entering a new era. It’s a era of public tantrums, of our small person learning to express herself. But it’s also an era of new discoveries. An era of learning to understand her physical difference, of noticing when others notice. We’re entering an era when how we react and how we respond will be crucial in helping her to maintain her self confidence and self belief in a world that’s suddenly starting to look very different not only to her, but to us too.

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Breaking out the moves on the dance floor at the 40th Anniversary Reach family ball 🕺

Now you are two: Lessons learned from my lucky fin daughter

Now you are two: Lessons learned from my lucky fin daughter

And now you are two.

I’m not too sure how it happened or where the time has gone. I’m not sure how a pregnancy that felt utterly endless has left me now with a bouncing and all too energetic toddler. I’m not sure how, despite how much I’ve savoured and clung on to every moment, time has still passed.

And now you are two!

I can’t help but think back to when you were born. It had been a scary pregnancy, wondering if you’d be ok. Then a very bumpy arrival meant you were whisked off to intensive care before I’d had a chance to touch you. The first time I properly saw your face it was surrounded by tubes and wires. But your cheeks were restored to a rosy glow, your eyes were bright and your little hand was utterly gorgeous.

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The first time I saw you ❤️

I can’t help but marvel at how far you have come and, moreover, how drastically my thoughts and feelings have changed in that time.

Back then I was worried. I was worried about everything. I was worried about how people would react, I was worried about how you would cope. Every little task I foresaw felt like a mountain that must be climbed. I fretted about how you would hold a toy. I fretted about what cups you’d be able to use. I fretted about how you’d be able to feed yourself with ease.

What a waste of my time!

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Then and now

Now I find I don’t often give a second thought to how you’ll get things done. You just will and, to be honest, it’s none of my business how you want to go about it. It’s not my place to step in with my two-handed mind and show you ways I would do it. Because I am not you and most likely, you can do it better. (That doesn’t mean I don’t reserve the right to buy crazy gadgets off the internet to help in your exploration – those random Amazon plate dividers have saved having to sweep up countless peas from the floor!)

I remember worrying about how people would react to you. When you were tiny I was anxious for people to know about your hand before they met you. I just couldn’t bear the thought of seeing expressions of surprise, pity or perhaps worse on their faces.

Now your hand isn’t a thing anymore.

Yes, sometimes people look at you. They even stare sometimes. But what I’ve learned in the last two years is that they’re actually staring at your smile. At your personality. At your vitality and zest for life. If they even notice your hand it’s usually with wonder at the fact they never noticed before. Some still stare at your hand and I do my best to ease their minds, but some people simply won’t be helped and, provided they’re not being too rude, that’s their problem and not ours.

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They’re actually staring at your smile

Way back in 2016 I wrote:

“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.” – Trying to find a little peace of mind, 2016

No, she won’t do it that way. And, you know what, I don’t mind that much any more. I watch her grappling in her own way and I am filled with such a fierce pride I don’t think I could even begin to express it. It’s a feeling I try not to convey too openly as I can’t help but feel the pride is tinged with a little bit of a brag; it’s a sense of “look what my kid can do and with ONLY one hand!” Then I have to try and resist doing a socially-unacceptable air punch of celebration.

“It’s that moment when you stop and realise that you and your husband won’t be able to hold your daughter’s hand at the same time.” – Trying to find a little peace of mind, 2016

I remember when this thought hit me during pregnancy. It was a bit emotionally crushing at the time, complicated as it was by a fear of the unknown and a good dose of anxiety and depression. You could have told me then that I was being ridiculous but I’d have internally shouted you down, all the while I nodded and agreed to your face.  But now, the idea – while painfully real at the time – seems utterly ludicrous to me.

When I reach out to take her little hand (she prefers you to hold her left – but that’s been a bit tricky since I broke my right!) I can feel her little paw – that tiny pad of muscle just past the wrist – bend and curl into mine. Holding her little hand and having her hold mine, feeling the gentle press of her tiny digits against my palm, is without a shadow of the doubt the most beautiful feeling in the world.

 

The golden years

There’s also no doubt in my mind that these years will be golden ones. She’s young enough to not be aware of her difference in a social sense yet old enough to explore and adventure with the best of them. She reacts with surprise and a little confusion if kids grab at her hand and marvel at it (my reaction tends to be a little more visceral). She’s yet to understand why they’re curious or to question why she doesn’t have two hands as well.

Yet I’m certain her brain knows that she’s adapting. Even now, at two years old she’ll try to reach out with her little hand if you offer her a second toy or snack to hold. Even now she’ll reach for it and touch the object with her lucky fin and there will be a moment of processing and realisation that this set up simply isn’t going to work. Then she swiftly switches hands, she clamps the first object against her chest with her lucky fin and she’ll reach out to take the second with her left hand.

These are the years where we can marvel in her achievements and bask in her sense of unshakable normality. I know a time will come when she’ll start to notice the difference. The time will come when a kid will ask one question too many and perhaps that sense of insecurity and doubt will start to creep in. I dread the day when I have to see that bright, worry-free face crumple a little bit. I dread the frown of confusion and injustice.

And yet now I feel stronger, I feel better equipped and armed for when that time comes. When we first found out about her hand the fears felt insurmountable. And now they’re simply a bridge to be crossed and we’ll follow her example to get across them.

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The sky’s the limit!

Despite the future worries about confidence and fitting in, I no longer worry about her ability. Not at all. I don’t waste a second of my time wondering how she’ll get something done. When I was pregnant, when I was in a darker space and I found it difficult to accept positivity about a scary situation, I hated hearing it. The positivity made me feel my feelings were somehow invalid and unjustified.

But as two years have passed by, I’m now one of the ones shouting the loudest: these kids can do anything! These kids aren’t going to be held back by their differences. These kids might have to work a bit harder at some challenges, they might have to puzzle it out, and they might have to face a bit more prejudice than others. But their ability is never, ever to be doubted. Not by the public, not by their friends and certainly not by their parents.

It’s surprised me to look back and see that nothing anybody ever said would or could have made me feel better at the time. Nothing anybody could have told me would have taken away those fears and reassured me, no matter how experienced or expert they were. The only thing in the world that’s been able to do that is Hero. She’s shown me, moment after moment and day after day that she is more than just fine. She’s proved to me that I don’t need to worry about her or what she’ll do. She’s demonstrated repeatedly that there is another way and that she’ll find it.

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Happy birthday my little lucky fin!

Expecting The Unexpected: Pregnancy after a limb difference

Expecting The Unexpected: Pregnancy after a limb difference

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

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

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

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

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

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

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Baby #2

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

 

Surprise: Baby’s got two hands!

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

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

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

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

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

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

 

Anxiety: The dreaded anomaly scan

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

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

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

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

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

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

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

 

Surreal: No more appointments!

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

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

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

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

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

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

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Before 3 become 4!

Temporarily one-handed

Temporarily one-handed

I fell over on Wednesday, clambering down a shallow bank in pursuit of my daughter who was hovering close to the river’s edge. Unfortunately for me the bank was wet where my river-bound dog had been dripping everywhere and the next thing I knew I was on the ground and my wrist and hand were in a shape and position I hope sincerely I never see again (although I do have a lovely x-ray photo for posterity, I probably won’t be pinning that one to the fridge!).

Fast forward through a pretty traumatic wait in the mud, bumpy ambulance ride and horribly conscious realignment at hospital and I’m home, plaster casted to the elbow and in a sling. Over night I’ve completely lost the use of my right arm. As someone who blogs regularly about raising a daughter without a right hand the irony hasn’t been entirely lost on me.

I can’t so much as lift Hero up or change a nappy, which I’m finding an incredibly difficult transition to make, despite knowing it’s temporary. Cue a huge amount of people offering and willingly giving a vast amount of time, support and help. That’s the weird thing about an injury like this, you’re the one in pain and grumpy, but it’s everyone else around who is really impacted. And thank goodness for those people and that help – I can’t thank them enough.

Luckily for me I’ve spent the last two years of my life watching videos on how people get stuff done with one hand. So when my sling unravelled itself this morning (ouch!) I initially had a panic. I was home alone, should I wander down to my neighbour’s house in my PJs and with half a dressing gown on? A pathetic sight to start anyone’s day! Then I spotted one of Hero’s hair elastics on the windowsill and I thought back to the number of awesome “how I do my hair with one hand videos” I’ve seen recently. Some fumbling, one flying elastic and a little teamwork between left hand and teeth later and we’re back in business and feeling rather smug.

Hero and I are going to have some adjustments to make over the next six weeks. Like how do two left –handers hold hands comfortably? I think there’ll be a bit of may pole dancing going on! At least she can rest easily that she won’t have to undergo the daily torture of having her hair put into a ponytail for a few weeks and those snazzy plate dividers might find themselves coming in useful for more then just one of us!

 

The joy of being told how it is: “She doesn’t know any different!”

The joy of being told how it is: “She doesn’t know any different!”

Emotions come in phases, they ebb and flow. Right now my emotional phase, in regard to Hero’s limb difference, is undoubtedly ‘over-sensitive’. As someone who will traditionally avoid conflict at all costs, even if seriously offended, I’ve actually found myself snapping once or twice recently.

My biggest bug bear at the moment? Phrases along the lines of: “But she doesn’t know any different!” or “But she doesn’t know she’s missing anything!”

The latest occasion came as I was telling someone, in response to a query as to how she was getting on “with her hand“, about how Hero had just scaled a 6ft ladder that was far too big for her. Luckily for me I didn’t witness the assent, I’m not sure I could have resisted running over to hover if I had! But I saw the end result. I saw her pride. I was amazed that she’d managed to get up that ladder at her age. The fact that she only had one hand was a secondary consideration.

In response to this, the person I was talking to interrupted me to explain that, for Hero, it wasn’t actually a huge achievement. “She doesn’t know any different!” they added.  Luckily, I do so love being told by people with no experience of limb difference exactly how things are with my child. As, I’m sure, every parent does.

Essentially, the statements are true, right? Hero wasn’t born with a hand and then went on to lose it.  She has no physical memory of having two hands.  Consciously, she doesn’t appear to know there’s anything different. And she sure wasn’t half as impressed with her assent as I was. I don’t think that, consciously, she even knows that she’s adapting – which I’m sure is what people are trying to say when they assert that, “she doesn’t know”.  But let me assure you that, subconsciously, she knows all too well.

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Mummy is meant to be holding my hand… not taking photos!

We’ve been struggling with this particular platitude of late following more than a few incidents where Hero has demonstrated that she’s actually incredibly aware that there is something different about her right hand.

We’ve watched her reach out to take something with her little hand, only to find that she can’t. These moments are always followed by a hesitation and a curious look at her hand to find out why it isn’t working the way her brain was expecting it to. We’ve often seen her try to manipulate an object as if she has fingers there, only to pause in puzzlement again.

She never had fingers. Yet clearly her brain, in its most primal form, thinks there should be two hands there. How else would awesome bionics such as the Hero Arm from Open Bionics work? How can you use nerve endings and muscles to control an arm that was never ever there? Unless the brain was hard wired to control something on the end of that arm, unless the brain still thinks there’s something there to be controlled.

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‘Now where did I leave the dog?’

When you watch your child adapting in real time and problem solving obstacles she isn’t even aware of, almost every day, it’s a tad galling to be told by someone that she isn’t actually achieving any of the things you think she is. Her brain somehow just knew there wasn’t something there and it has managed to reprogram itself accordingly. That she doesn’t need to adapt because she’s never known any different. When she’s older, I don’t doubt that she won’t remember ever having had to make these changes or work through these problems. I’ve no doubt that she’ll say herself that she’s never known any different.

I’m also not for a second trying to imply that she’s finding life hard. She’s absolutely thriving! You wouldn’t know most of the time that she even had a difference. There are hurdles, of course, but she crosses those hurdles so fast you’d barely notice the change. But she is crossing hurdles and I’m a bit sensitive about someone with no direct knowledge telling me categorically that she isn’t.

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‘Too tall for me? I don’t think so!’

For us, as her parents, through watching these early developments we’ve seen each stage of her trial and error. We’re witnessing her brain rewriting the programme to suit the tools that it has, rather than the ones it thinks it should. It’s a fascinating process. It’s wonderful and humbling to see. But being told by some random stranger that, actually, nothing you’ve witnessed in your child’s development is true is a tad… irritating.

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Five fingers, feathers and a faux pas: A sad day for limb difference awareness

Five fingers, feathers and a faux pas: A sad day for limb difference awareness

I made a little faux pas today. Unfortunately, while it seemed small at first, it was the kind of faux pas that might have far reaching consequences into a young girl’s future. It may even have scarred her for life. I feel terrible, of course, no more so because I failed to rectify my mistake at the time; no one wants to be the source of a child’s life-long fear.

Obviously, (at least I hope) I’m joking to some extent. It was hilarious as soon as I realised what had happened. Although, in reality, there might be some follow-up conversation required by the family involved!

It all started with the sun. It was the first time we’d seen it in months and to celebrate Hero and I headed out to visit a near by farm park for the first time. We did all the usual things, and we bought a bag of food to feed the animals. Well, I fed the animals at any rate. Hero tried twice to feed the sheep her five remaining fingers, so we’ll have to wait a bit longer until she’s mastered the flat-palm approach before she can safely do the same!

We spent a lot of time at a large cage with a few birds in it. The birds were fairly unimpressive in my opinion, the kind of birds we get hundreds of in our garden. But that wasn’t the point. Where Hero is concerned there is no such thing as a boring bird. Hero’s reaction to spotting a bird is something like I imagine a life-long Nessie hunter would feel after finally discovering that the prehistoric beast was real. It’s wonderfully, outrageously over the top with excitement.

She was poking her fingers through the bars of the cage (it was a very big cage, and there were very few birds in it, so I wasn’t too worried) in order to point very specifically at each bird, you know, in case I hadn’t spotted it yet. And it was during this moment that a brightly coloured parrot, one we didn’t even know was there until that point, dive-bombed her from on high and pecked at her index finger, drawing blood. (Life lesson: Don’t let your child put their fingers through the bars, even if you think the cage is empty!)

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This was taken before we learnt our life lesson…

There were of course a lot of tears and upset and, even after we’d washed her hands and carried on our journey around the park, Hero was a lot more hesitant to approach the animals too closely. She was just as fascinated and excited, only from a safer distance this time! I hoped that, by the time we reached the giant duck enclosure (the ducks were giant, as opposed to the enclosure – although, that was also a goodly size) that she would have recovered her earlier abandon. But unfortunately, she was instead a bit clingy and was bordering on tearful.

Enter stage right: A sweet little girl, out for the day with her family. She couldn’t have been more than four years old and she was a little concerned about Hero’s welfare. So I explained to the girl that Hero had been bitten by a parrot earlier on and that she was a bit nervous about the ducks. Job done. Situation explained – or so I thought. The little girl was quick to reassure Hero (erroneously, I believe) that the ducks were completely harmless and I was really touched by her genuine care. But despite her reassurances, the girl still had a little frown on her face. I had a moment of doubt that perhaps I shouldn’t have mentioned the parrot, maybe this little girl would be nervous around the parrot too now, but I didn’t think more of it than that. Whoops.

The family moved on and that, I thought, was that. At least until I heard the parents of the girl angrily calling her name. I looked around to see that the little girl had broken away from her family and, ignoring their shouts, was running back towards us with a look of great agitation on her face. When she arrived (parents still frantically shouting) she came straight up to Hero, pointed down at her missing hand and with a horrified expression on her face, said: “Did a parrot really eat her hand?!”

This was a bit of a crucial conjuncture in my life. I SHOULD have used this opportunity to, not only raise awareness about limb differences, but also to reassure the girl that parrots didn’t routinely tear off toddler’s hands (as far as I’m aware). Only the next few seconds happened so fast… I succeeded simply in blinking and then laughing in realisation before her family finally caught up with her and whisked her off.

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The tractor was much less frightening!

That poor kid. That girl might be about to go through life thinking that a parrot, a small, cute, innocuous little parrot, swooped down from on high and pecked the hand off a traumatised toddler. And that’s my fault! I’ve been on a campaign to raise awareness and understanding about limb difference for the past two years and I somehow left a girl possibly traumatised for life. I console myself that at least she’s incredibly unlikely to stick her fingers or hands into a birdcage from now on though, so perhaps I’ve at least saved her a nasty peck on the finger!

When we were pregnant with Hero we would joke around a lot as we were processing the emotions. We had a lot of fun coming up with fictional disastrous reasons as to why Hero might have lost her hand; they were stories we secretly hoped she would keep in reserve in case anyone was ever rude. It seems that, inadvertently, I’ve started the tradition a little earlier than I’d planned!

I’ve only got one hand… because a blood thirsty parrot ate the other one.

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Beware the terror from above!

So, to that little girl (and her family), I’m really sorry! I hope that you don’t have nightmares and I very much hope that you don’t develop an irrational (to some extent!) fear of parrots. I’m sorry that I didn’t succeed in raising any awareness this time around. But, thank you for making me smile all the same.

 

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All’s well that ends well