The Limb Difference Battle Cry

The Limb Difference Battle Cry

There’s been something of a battle cry raised amongst the limb different community this week. In the wake of a particularly rubbish week for discrimination against people with limb differences many have been raising their voices in a wave of solidarity.

The interesting thing is, while some of the comments our limb different compatriots have received have been pretty appalling, the response has overwhelmingly been one of empowerment and positivity. There’s been a healthy dose of anger, but it’s been channelled into uplifting those around, into raising awareness rather than into resentment and bitterness.

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Check out our buddy Alexis at Stump Kitchen, beautiful inside and out! https://www.facebook.com/stumpkitchen/

It’s not always easy to be the better person. Taking the high road isn’t always simple and sometimes we might want to rage and hurl abuse at those rude enough to share their ignorant and misguided opinions.  And yet that’s the best thing about this fierce and passionate community of limb difference advocates; it’s never about the hatred. They might be handed incredible negativity, but it’s transformed and directed back out into the world as pure, punching positivity.

It’s been a week of mixed feelings as a parent of a limb different little one. I’ve cried as if these insults have been directed at me or mine, and in truth, they have been. In reality, a comment against one person with a difference is a comment against them all and the team has responded accordingly.

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Mother of two-year-old girl born with half an arm told to ‘cover it up’ – DailyMail

Reading all of these posts from such thoughtful, talented and inspiring people at first filled me with a dread I’d not thought about in a while. Over the last three years on our limb difference journey, my biggest fear has gone from all the things I thought she wouldn’t be able to do (if I’ve learnt anything at all, it’s that there’s nothing she won’t be able to do if she sets her mind to it) to fearing the reactions of other people. It hurts like hell when someone passes an insanely insensitive comment about your perfect baby with a difference, it hurts when people stare or, worse, when they point or mock.

But I’m not sure anything will prepare me for the day when someone says something to my daughter’s face, or behind her back, and she understands their intent. I’m not sure I’ll ever be ready to see her face crumple with doubt and hurt. To us, to her family and her friends, she’s perfect. She’s the way she’s supposed to be. She’s talented, she’s tenacious and she’s strong. We tell her this every single day and I can only hope she sees the truth in it and radiates that sense of self-assurance and inner beauty throughout her life.

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If you’re different and you know it, do a dance!

And yet I fear that a single badly judged comment, a single jibe or stare could unpick all of that self-belief. It could tug on a loose thread of doubt and unravel the whole thing. And if that happens, when that happens, when the words of her parents are no longer enough to fill her world, then there’s a whole army out there ready to pick her up again.

There’s an entire community of adults and children alike who are putting themselves out there, who are shouting the loudest, that they – and she – are perfect just the way they are. They’re standing up in the face of the judgements, refusing to hide away and they’re singing from the rooftops that they are capable, beautiful and unencumbered.

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No hand? No worries!

There was a time, not so long ago, when to be different meant you were alone. There are people alive today, some not even as old as me, who once felt like they were the only one. Social media might get a bad rap, but to those with any kind of difference it’s quite possibly the single most powerful tool for building confidence and self esteem in our young people.

The very fact that people like Stump Kitchen, Abshow, Brian the one-handed drummer , The One Arm Wondermom and countless more (I won’t list them all for fear of missing someone out) are brave enough to publish their stories, their successes and their challenges is changing the lives of those who follow in their footsteps. Thanks to them our children will never know what it’s like to feel like she’s the only one. Thanks to them she has behind her the most incredibly loyal and empowering team of cheerleaders. She’s got mentors, teachers, guides and role models surrounding her as she grows.

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When you’ve got powerful friends behind you…

In the glare of these bright lights I hope the naysayers and the hurtful ones are slinking away to hide themselves for a while. I hope they’re thinking about what they said, I hope they are realising that these powerful posts are aimed at them. I hope they’re considering that maybe they were wrong to give voice to their thoughts; I hope they come to learn that good intentions alone don’t negate their hurtful actions.

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We’re looking at you, haters!

There’s been something of a battle cry raised amongst the limb different community this week. The catalyst for the outcry has been painful to read for parents everywhere and yet those ignorant people, the ones who sought to hide or shame our children’s differences, have spectacularly failed. They’ve caused parents, limb different adults and lucky fin children all around the world to shout out louder than ever. They’ve caused a wave of images of celebration, lucky fins held high and taking centre stage.

I hope that one day in the future my daughter is proud enough to shout just as loud. I hope that one day her voice, and her perfect difference, joins the very battle cry that’s already changing lives.

 

Toys: harbingers of a new phase

Toys: harbingers of a new phase

I can’t help but feel that we’re entering into a new stage when it comes to Hero’s limb difference, partly for the better and partly, I think, for the worse – at least for a little while. For the last two and a half years her difference has hardly been noticeable. Except for the odd blip when someone’s said or done the wrong thing, we’ve hardly had any issues at all.  Certainly all of the worries and fears I nursed when I was pregnant and when she was tiny haven’t come to fruition.

But times are changing now; she’s almost two and a half and she’s starting to get a lot more dextrous and coordinated. She’s attempting things in a way she just wasn’t old enough to try before and is beginning to enjoy toys and games that are trickier to navigate with just one hand.


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Juggling the baby

To celebrate the arrival of her new sister Hero was given a couple of dolls and some accessories for them, along with her new babies has come many more requests for help.  Suddenly she’s coming to me a lot more than she used to. Help dressing and undressing her baby, help changing her baby’s nappy and help opening and closing the zip on her bag. Granted, most of these things any kid would need support with as they’re just starting out, but we’re definitely noticing the extra complication that having no right hand brings.

When she’s trying to fasten or unfasten the zip on her baby’s bag, she hasn’t yet figured out how to pin the other end with her little hand in order to give her enough tension to pull the zip across. So while she wants to carry the bag around on her pram, like Mummy does, it is currently inaccessible to her without help. She’s also struggling with baby’s nappy. She can’t yet wrap the nappy around baby with only one hand to grip with, and when she pulls the little fastenings across, the nappy comes with it and she has to start all over again.

As she gets older she’ll figure out ways of doing all of these things, but right now she’s just starting out and her little hand is becoming more of a challenge than it’s been for her before. She now has outbursts from time to time, always short lived, of sheer frustration as her fledgling independence is thwarted.

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D’oh!

 

One-sided conversations

I was watching her play with her dolls’ house this morning, ensconced entirely in her own wonderful world. It was a rare chance to just sit and observe, as usually I’m roped in to play as well. The traditional format is that I have one of the dolls and she has the other and we pretend they’re talking as we hold the little people up to look at one another.

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Playing on her own, however, conversations between her dolls suddenly became a little trickier to orchestrate. I watched her try to figure out how she could move them both at the same time, her little hand kept knocking the second doll over. Eventually, she gave up and laid one figure down on the floor and held up the other one like a floating spirit looking down on them while they ‘chatted’. She didn’t notice anything was amiss and carried on with her game as happy as Larry. Behind her, though, my heart was aching in a familiar way.

 

Horse riding hurdles

Then there was the other mini wobble we had, the worse bit of which was that this one was entirely my fault. Hero and I had been playing with some figures and, without thinking, I showed her how she could hold one of the people on the back of the toy horse and pretend it was riding. She loved the idea and went to do the same only to discover that for her it was impossible. With her little hand she couldn’t hold the figure up and move the horse at the same time. She quickly got frustrated, a little upset and the horse was relegated unceremoniously to the floor.

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These horses are bigger than the ones we were playing with in the incident above. She can fit her little hand underneath these ones and move them while holding the amazing horse riding crocodile on its back! Success!

It was a brief moment, all but forgotten by her within seconds, but I felt dreadful. With a new baby in the mix I’m a little short on sleep and I think I’ve been less in tune than I normally would be, but to actively suggest something she can’t physically do seemed more than a little harsh and it’s played on my mind ever since.  Perhaps as much because it heralds a whole new phase of experiences and frustrations coming our way as because it had been caused by me.

As Hero gets older and learns more about what her body can do she’ll find ways of making things like this work. However, before we get to that happy place I think we’re going to go through a period of trial and occasional frustration, at least for a little while. She’s of an age where she’s ready for the next challenge, but hasn’t quite got the problem solving skills to work out different methods if she can’t emulate the techniques used by her two-handed peers. After all, as her goals get bigger and more ambitious, it will inevitably become more challenging for her to achieve them.

 

Exciting times ahead

While I’m a little apprehensive about this new phase I also know that the whole thing will have more impact on my emotions than it will be on hers, and I take heart from that! I doubt she’ll even remember these little trial and errors.  These changes are also the harbingers of some exciting new times ahead. They’re a sign that she’s growing in skill and ability; a sign that she’s pushing herself forward to new things and will be using her little hand in ever more confident and adventurous ways. These changes are the heralds of a whole wealth of new abilities and skills that I cannot wait to see her master.

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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 🕺