The hypervigilance trap: a cautionary tale

The hypervigilance trap: a cautionary tale

I almost threw a man overboard last weekend and, alas, I’m not talking figuratively. I almost grabbed the poor guy and hurled him from the top deck of a 19th century war ship.

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HMS Victory: aka HMS Hypervigilant

We were visiting the HMS Victory, a stunning ship with a spectacular past, currently parked up in a dry dock in Portsmouth, England. The ship has been restored to as close to its original set up as it can get (only considerably cleaner, quieter and less smelly I should imagine). We had chosen the top deck of the Victory for our lucky fin’s inaugural outing with her walking reigns and we weren’t disappointed. She cruised from bow to stern and back again and only stopped here or there to poke a stationary cannonball or to stroke the shiny plaque where Admiral Nelson fell.

A little history, to help me set the scene: In 1797, on the island of Tenerife, Horatio Nelson received a musket ball to his right arm, just above the elbow. Medical necessity at the time meant that his arm was amputated right then and there. A few years later, during the infamous Battle of Trafalgar, the Lord Admiral wore the right sleeve of his naval jacket pinned up against his chest, as if he was simply resting a hand there in thought. (Incidentally, and largely unrelated, I find it really difficult and a little hilarious to imagine Horatio Nelson referring to his missing arm as his ‘lucky fin’ or his ‘little arm’!)

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Horatio “Nemo” Nelson

Back in the modern day, as we trod in the footsteps of a famous lucky-finned forefather, we hadn’t actually given Horatio’s limb difference a moment’s thought. If I’m being honest, I hadn’t really given the ship a huge amount of thought either (anyone who knows me will know that it takes a lot to distract me from such a significant historical artefact), because I was enjoying watching Hero too much. It’s an odd thing, now that she’s walking, I seem to have returned to that completely besotted newborn stage, where I just can’t get enough of watching her in action. She’s simply awesome!

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Lucky Fin Love!

Anyway, as we made our way towards the bow of the ship in search of the stairs to take us back below deck, I heard a fellow visitor cry out:

“Oh my goodness! What happened to your arm? Did you lose it like Nelson?”

The guy was laughing his head off and talking loudly enough for the entire crew to hear. Now, I tend to avoid conflict like the plague, as followers of my blog will probably have guessed. However, for some reason, this time I swelled up like the Hulk. How dare he bring up her limb difference in such an appallingly callous way. How dare he point it out to us, completely out of the blue, when it was the very last thing on our minds right then.

My shoulders hunched, my fists clenched, I spun around with the full intention of seizing the guy by the shoulders and lunching him bodily over the gunwales. There was going to be no comical splashing into the waters below for this guy, oh no; it was the litter-strewn concrete of the dry dock floor for him!

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That was me, second from the right…

As I turned, catching a look of surprise, horror and amusement on my husband’s face as I did so, I noticed another kid on the deck. This boy was about eight or nine and had pulled his arm into his shirt and tucked up the sleeve like Horatio Nelson. As rapidly as my rage had erupted, I seemed to turn back into a human again, my clothing maybe a little torn and my husband a little terrified after an otherwise uneventful transformation. This awful human being, the one who had no idea how close to imminent death he had just come, was actually talking to his son about something entirely unrelated and separate from our daughter (who was still toddling, totally unawares, about the deck).

It took me a few minutes to calm down from this entirely non event. My heart was going like a sail in a storm and I had so much adrenalin in my body that my hands were almost shaking. As we descended below deck, and away from the innocent and unawares father-and-son duo, the word ‘hypervigilant’ came to mind. It’s a term I’d not really thought of before, but had come across at our recent Reach family weekend during a talk from Orla Duncan, a psychosocial nurse who specialises in supporting children with a physical difference and their families.

Orla had talked about how people with a difference of any kind, and parents of children with a difference of any kind, can sometimes become hypervigilant when they are out and about in public. She explained how they can feel so insecure or vulnerable that their subconscious is almost looking for that stare or listening for that comment.

She talked of an experiment involving actors with large fake scars drawn across their faces. The actors looked in the mirror at their difference before heading out into the busy streets. However, just before they stepped out, a make up artist came forward under the pretence of touching up their makeup, instead they actually removed it completely. Upon their return, despite looking entirely “normal”, every single actor reported feeling like they were being stared at and that they were being judged and victimised by other people.

The end result being, of course, that because they were aware of their difference they were expecting some kind of reaction from those around them. They felt that their difference made them stand out from the crowd and it gave them a ‘me against them’ mentality. In short, they created their own reality by looking around at people, catching others’ eyes and acting on edge. People probably were staring at them, but not at all for the reason they were expecting.

I’m not for a minute suggesting that we go out all day every day and glare at unsuspecting bystanders, daring them to make a comment or even to notice Hero’s hand. We certainly don’t. There’s been plenty of occasions of late where, because her difference is so normal to us, people have looked and I’ve genuinely wondered whether she had food on her top and that’s why they were curious. I even had to lean round to check at one point.

Yet Orla certainly has a point. If she didn’t that man would have passed me by without a second glance, let alone an impulse to kill. When you get to the point where you are a second away from committing a very messy and a very public murder in full view, not only of your own child but of the victim’s as well, you’ve got to wonder whether your subconscious is perhaps a tad more wired than you give it credit for. Interestingly, it’s not something I think I had really experienced before the “Macdonald’s Incident”. Being as how we’ve encountered nothing of the sort since then, I’d like to hope that my subconscious will be able to chill and enjoy this time of genuine peace, happiness and excitement that the rest of me is feeling as our little lucky fin lets loose her sails and finds her own heading with flying colours.

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The importance of belonging

The importance of belonging

Last week we attended our first Reach Family Weekend. I’ve at last finished raving to my friends and family about what an amazing time we had, so I can now try and articulate some of my enthusiasm into a coherent blog post.

She belongs

‘Fitting in’ is one of those things that has always eluded me, and I don’t even have any outwardly obvious differences (terrible dress sense and an obsession with Disney and dinosaurs aside, of course). Consequently Hero’s sense of belonging and of fitting in has always been incredibly important to me. Being a part of the Reach community is a huge element in my grand ‘Give Hero Self Confidence’ scheme and so far so good, it would seem.

I’m always pretty confident that wherever Hero is going, be that to nursery or to a class, she’ll stand out somewhat and be easily identifiable. Partly due to the inevitably outrageous outfits I put her in and the slightly left-field name we’ve given her, but also because of her hand. Dropping her off at the Reach crèche (run by the wonderful folk from Freedom Childcare) I realised that she wasn’t necessarily going to stand out today. She was instead joining a group of children just like her, in their own unique ways. She was going to fit right in. That realisation brought mixed feelings, and I started to recognise that a part of me actually loves the fact that she’s noticeably unique. Yet there’s the other part of me too, that just wants her to fit in.

Throughout the gala dinner she managed to chat up a fair few people, and not just the middle-aged males she usually likes to charm. She’s often drawn attention when we’re out in public and I have always assumed that people were interested because of her hand. I’ve wondered if people wanted to talk to her out of a well-intentioned pity. Yet this weekend people weren’t talking to her because she was different, because this weekend she wasn’t. They were talking to her because she has a beautiful personality (slightly biased parent here, naturally) and is engaged with those around her. It has absolutely nothing to do with her little hand and it’s been unjust of me to assume so. She’s so much more than her missing hand, as I’ve always known, but this weekend has taught me that actually everyone else sees beyond that too and that I need a little more faith in how the world views my daughter.

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Trying to distract our hosts, Reach Chairman, Lee and actress Melissa Johns!

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We belong

We’ve only been part of what many call their ‘Reach family’ for a year. I’m often a bit of a slow-burner when it comes to feeling accepted and like I’m really part of a group or a team. I’ve been known to be attending a club or activity for years and to still not feel like I’m really one of them. Yet, at the Reach gala dinner, surrounded by hundreds of people, many of whom I don’t even know, I’d never felt more like I belonged. I was chatting with amazingly talented professionals, paralympians and actresses, only to find that they were just as curious about my daughter and me as I was about them. I was sitting alongside families from my regional branch who I already call my friends and am happily able to meet up with throughout the year. I also made new friends from completely opposite sides of the country, although in fairness, most of these happy meetings were engineered by Hero accidentally wandering under people’s tables and needing to be retreived!

I recall vividly the days before we sent off our application to become Reach members. We were still pregnant and not really in a good place emotionally at all. I remember thinking how unlucky I was that the rest of my life was going to be tied to this charity, it felt unfair. Isn’t life funny; when some of your biggest misgivings can turn out to be your biggest blessings. I only wish that everyone had a community like this to be a part of. Somewhere they can feel confident, somewhere they can ask questions and somewhere they can just be welcomed with open arms and fit right in, regardless of background, outlook or feelings.

Inspiration

The first half of the day was spent in a conference hall, enjoying a number of different speakers. We heard from a hugely experienced plastic surgeon, Dr Ruth Lester, who’s helped us to understand the thought processes behind the appointments Hero’s had. I’ve mentioned before how disappointing we found Hero’s first meeting with the surgeon. While she couldn’t make up for his rudeness, Dr Lester did make sense of the outcome for us. We also met Sue Kent, a incredible lady who overcame intense prejudice to train as one of the first people in the world to be a qualified sports masseuse, using only her feet and who, despite everything, had the best sense of humour!

We also met with Orla Duncan,  a psychosocial nurse who specialises in supporting children with a physical difference and their families. Orla gave parents tips on building  children’s self esteem, which played right into the hands of ‘Operation Give Hero Self Confidence’. We heard from two different prosthetic makers, including the Team Umlimbited (of Shed of the Year fame) as well as Joel Gibbard from Open Bionics, who’re making the most astounding prosthetic hands at the opposite end of the spectrum. According to Joel from Open Bionics, there’s a very real possibility that by the time she’s twenty years’ old, Hero could have a bionic hand that functions entirely as a human hand would. If there was ever a time to be born with a limb difference, now would be it. Early enough to be able to watch this astounding technology develop, but young enough to still benefit from it in the future. I look forward to the day when Hero can show off her phenomenal prosthetic hand to the envy of her peers!

Hearing from Paralympains and all-round lovely people, Hollie Arnold and Claire Cashmore, was wonderful. They were honest about the bad times, something I believe is essential to help people to understand and to accept their own emotional ups and downs in parenting a child with a difference or in living with a difference themselves. They didn’t shy away from mentioning the bullies, something I was incredibly grateful to them for. The idea of their children being bullied is a fear most parents share, even more so if your child has any kind of difference. We all know it happens, so why pretend that it doesn’t? But what came out of both women’s stories was the sheer, beautiful confidence they now have. They were rightfully proud of their achievements and they certainly aren’t stopping there. Being honest about the bad times they’d been through simply  made their achievements all the more striking.

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Hollie Arnold – gold medalist, three-times world champion and all-round lovely person!

Having the opportunity to chat with them both afterwards, mostly on the dance floor in the evening, was brilliant; it made them real. Yes their achievements are extraordinary, but they are human none the less. I know that not everyone can be a Paralympian, and that might not be a path Hero even wants to contemplate (certainly not if she inherits her mother’s woeful sporting ability anyway!) but they proved that it is a goal that can be attained if she puts her mind to it. Hollie mentioned how she played almost every and any sport available to her at school, including hockey. I’ve mentioned before my husband’s love for hockey and so it was great to have the opportunity to ask Hollie how she got on and to ask how she adapted her arm to enable her to play. She laughed and told us that she’d never used an adaptation for hockey, she’d just grabbed the stick and smacked the ball. She didn’t care at all and if I take one thing away from the talks it’ll be that we probably shouldn’t care either!

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Dancing with the stars: Claire Cashmore and Hollie Arnold

We were also lucky enough to meet a stunning young lady called Melissa Johns, who was most recently seen acting in Coronation Street. Melissa’s confidence was phenomenal and she looked amazing up on the stage, so I was astounded to find out how hard-earned that confidence was and how she’d only very recently achieved it. People like Melissa, putting themselves out there and braving the gauntlet of rejection and prejudice, means that Hero will enjoy seeing role models and people just like her on the TV. I often go on about representation at Though She Be But Little, it’s something I’d never given much thought to before I’d had Hero. But my daughter and any child with a difference, be that a disability, their gender or their skin colour, should be able to see themselves out there in books and in the media. They shouldn’t have to feel like they don’t fit the mould. People like Hollie, Claire, Melissa, Sue and those like them, are all striving to achieve their own goals and in so doing are paving the way for the generations who’ll come after them and have their blazing trails to look up to and follow if they wish.

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Meeting the talented Melissa Johns on the dance floor

I should probably start wrapping things up here, but trust me, I could go on. This weekend we found solutions to problems we didn’t even know we might have, we found
out that Hero is blissfully normal within our Reach family and that we, and everything we feel, is normal too. We were star struck to meet such talented individuals and people from all walks of life, all blooming with so much hard-earned confidence. These young people, including a beautiful and articulate one-handed trainee teacher, the professionals, the sports stars and the actresses, are all Hero’s role models. They’re her peers and they’re people I’d be thrilled for her to look up to and to emulate. I can’t think of a better community to inspire, motivate and support our own little superhero as she grows.

 

 

 

 

 

Simply a matter of perception

Simply a matter of perception

There’s a huge difference between “there’s nothing we can do” and “there’s nothing she needs”. As I touched upon in my last post, the difference between the two phrases might not be all that profound, the end result is the same after all. Yet I’ve come to discover that while there might be only a word or two different, there’s a massive disparity in their meaning.

Nowhere was this more obvious to me that at our first appointment at the limb centre this week. The whole experience was entirely different from previous appointments we’d had elsewhere, from the moment we stepped into the building to the moment we left. And it was different for the better.

At previous appointments in numerous different hospitals, Hero has always been different. We’ve sat in waiting rooms full of two handed people, more often than not she’s been an object of curiosity. I don’t mind that so much, nobody has been rude to us there. Yet when we grabbed a seat in the limb centre waiting room, we found ourselves opposite a little boy with a hand just like Hero’s. Perhaps she’s too young to notice the similarities just yet, but I was very aware of it, and so was he. The little boy immediately engaged with her, he started making faces (using his hand and his little arm to pull a wide smile) and she started following him around the room, enraptured. It was such a beautiful but simple moment, I hope it was the same for the little boy’s mum too, to see our kids playing and comparing with no need for questions or staring.

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Having a blast in the waiting room!

In the appointment room it was pretty toy-tastic. Hero was very clearly comfortable in there and wasted no time in cruising up and down the walking bars and even admiring the brightly coloured artwork on the walls. She absolutely loved meeting her two doctors, Hero is a big fan of adults and children (babies, not so much). They were so incredibly positive about Hero and particularly about her ability with her little hand. She chose a good moment to demonstrate her Duplo skills; how she carefully positions one block between her little hand and her chest before clipping on a second block with her free hand.

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Admiring the artwork

The appointment was only ever a meet and greet and I was neither surprised or dissapointed to be told that we don’t need to see them again for another year. Because this time, exactly as I’d hoped, there was no “well, there’s nothing we can do”. They’d not come into this appointment with a “how can we fix this” attitude. Instead they agreed wholeheartedly with me that trying Hero out with any kind of prosthetic would really hamper her development at this stage. And why bother when she’s already finding her own ways of using her hand so effectively?

Previous consultants have talked about how her little fingers wouldn’t ever have any functionality. About how she wasn’t a good candidate for toe-to-hand surgery and about how there was very little to be done to improve her hand’s function. At the limb centre, however,  it was simply a wonderful appraisal of all of the ability she does have in her little hand, with n’er a mention of what she doesn’t.

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Showing off her skills for the consultants.

As the Reach tagline says; it’s ability not disability that matters and I couldn’t help but feel that the folks at the limb centre, be they staff or visitors, really and truly understood that and wanted to ensure that everyone else did too.

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Hero has left the building. Thank you very much.

Myth busting: Last year’s fears

Myth busting: Last year’s fears

I thought that Hero’s first birthday would mark some kind of huge emotional landmark for us, at least where her little hand was concerned, but I never had that lightning bolt moment. However, now that she’s fourteen months old something feels like it’s finally falling into place.

There have been many points over the past year or so where I’ve thought that I was totally at peace with her limb difference. There were times when I thought it didn’t bother me any more, only to find the odd little spanner being flung into the works, be that unsavoury characters at a road side restaurant or an insensitive comment thrown our way. Now I’ve realised that emotions aren’t a one-way street, where all you can possibly do is go forward. Mostly, you’re headed in the right direction, but every so often you might hit a bit of a pothole. Happily for us right now, we’re cruising in the right direction on a currently smooth and empty road.

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The king of the swingers, oh, the jungle VIP!

A change of perspective

This time last year I simultaneously craved and loathed medical appointments for Hero. I craved them because I still wanted something to be done for her. I don’t know what I hoped that ‘something’ would be, but with all the appointments we were having surely there was a specialist somewhere that could “fix” this. We were referred to both orthopaedic and to plastic surgeons within the first three months of her life, one of them must surely have the answer. When each appointment letter came through, none them requested by us, my expectations would start to rise, even if I didn’t realise it at the time. I would be snappy and waspish in the waiting rooms and I would march into the meetings like I was preparing to do battle. Yet, each time they said there was simply nothing to be done.

I knew there was nothing to be done. Short of reversing time and repairing whatever kink in the development stages resulted in her missing hand, there is simply nothing to be done. I knew that. Yet it still angered me each time we were told the same. I was frustrated at having numerous referrals, which built up a sense of tension and expectation, only to be let down each time and reminded again that there was nothing to be done.

A year later and we’ve been told there is another referral in the pipeline sending us back to the gloriously insensitive plastic surgeon who had been so frustrating in the early days. A year ago I would have clung to that appointment, unconsciously hoping still for that something unknown. Yet this time I just grimaced at the letter and wondered why on earth we are heading back down that path. Only this time my reaction wasn’t bourn from a sense of pointlessness, a sense of ‘there’s nothing they can do’. This time my disinterest is because there’s nothing they should do. This tenacious, problem-solving and downright clever kid, just doesn’t need anything. She doesn’t need help. She doesn’t need adaptations. She doesn’t need to be fixed because nothing is broken.

I’ve had a year now of watching her smash through her milestones, of finding out her own ways of getting things done. You can’t watch Hero in action and genuinely think there is a problem to be fixed.  She’ll spend over twenty minutes trying to clip a harness together, never giving up or getting angry. She’ll keep working those Duplo blocks until she can hold them in just the right position with her little arm to be able to clip them together before pulling them apart again. This kid is walking everywhere and carrying things as she goes, something in each arm.

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All hail the Duplo Master!

This girl doesn’t need to see a plastic surgeon and, at last, her mother doesn’t need her to either. Realising this was the landmark moment I’d been waiting for. Here is that moment: She’s ok and I think I’m ok too.

The new normal

Meanwhile, Hero also has her first appointment at our local limb centre this week. Unlike the trips to surgeons that she doesn’t need, I’m genuinely excited about this one. Not because I’m expecting anything more than a meet and greet, nor because I want anything more than that. I’m excited because this isn’t going to be like the other appointments. Annual visits to the limb centre will be our new normal. These are the people who will be making sure her little hand is growing as it should be. These are the people who will craft her first bike adaptation to stop her messing up her back by leaning on different length arms. These are the people who, a few years from now, might help her find a way of playing the violin with her dad and of joining us both on the archery field.  These are the people who will help her to do whatever she wants to do, on her terms and when she wants it, with no promises or expectations of changing her. In short, these are the appointments we want, the appointments we didn’t even know we needed a year ago. These appointments are all about acceptance and embracing things as the normal, the everyday and the downright amazing.

Monkeying around

There was another landmark moment this week that took me all the way back to one of my first blog posts: ‘Trying to find a little peace of mind’. In that post I was frightened as hell about this journey we were on. I listed a number of thoughts that, at the time, caused me a lot of heartache. I’d like to reach back through time and tell myself how it’s actually going to be. So far none of those fears have been realised. Not one. Not even a little bit. Of course, we’ve had a few difficult bumps in the road, and I’m sure we’ll have more to come, but that is all they are: bumps. They’re no longer insurmountable mountains, they’re no longer blocking our way.

One of the things I worried about back then was that we wouldn’t be able to both hold  her hands at the same time, that we’d not be able to stand side by side and swing her up into the air between us. I just couldn’t see it then, as ridiculous and laughable as it sounds to me now. And as if to prove a point (long may she continue to do so!) Hero was having an absolute blast this weekend being swung high into the air between her dad and her gramps, loving every single moment and not even knowing that she was defying all of our fears.

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#LuckyFinsRock #ItsAbilityNotDisabilityThatMatters

Making Some Noise about the big things the little charities do

Making Some Noise about the big things the little charities do

This week Hero, and her team of spokesparents, was invited to the Cardiff headquarters and studio of Capital FM to talk about one of our favourite charities, Reach. Breakfast show presenter Polly and producer Andy welcomed our little Nemo as well as our friends and fellow Reach family into the studio as part of Global’s Make Some Noise charity day on Friday 6th October, of which Reach is a very grateful beneficiary.

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In the Capital FM studio with breakfast show presenter, Polly

Make Some Noise aims to raise awareness and much needed funds for smaller and less represented charities and, let’s face it, Reach isn’t exactly a household name. Why would it be, when only one in 32,000 babies are born with Hero’s condition? I certainly had never heard of it, or even knew that it was needed, before Hero burst into our lives. Yet need it we have, and it took an unexpected radio interview to make me stop and appreciate exactly what charities and non profits, like Reach and the USA’s Lucky Fin Project, have done for us over the past two years.

During the interview we were asked where we would be now if we didn’t have Reach and I had to pause and think for a moment. The impact Reach has had on our lives is subtle, almost like a soundtrack playing in the background, but it’s no less profound for that. Reach doesn’t jump and shout and make itself known, its just there and its presence is almost taken for granted, like a beloved family member.

Reassurance:

We discovered Reach, through the power of Google, on the very day we found out about Hero’s limb difference. In our welcome pack we received a book full of personal accounts of every stage of parenting a limb-different baby, from birth through to adulthood. This booklet, before I’d even met any other members or communicated above and beyond a simple application form, was my first little bit of validation. It was a written reassurance that it was ok to feel worried about our baby’s future but that, despite these worries, she would be absolutely fine. More than that; she would thrive!

Normality

Before our 20-week scan I had never come across anybody with a limb difference. My great grandfather lost his hand in a nasty farming accident, but sadly I never got to hear the tale in person. I’m a teacher and have met hundreds of different children over the five years I’ve been in education, and yet I’d never seen a child with a limb difference. Even now I’m aware of it, I’ve still not come across anyone outside of Reach or the Lucky Fin Project with a similar difference. I don’t want Hero growing up with a sense of isolation or of not fitting in, with the sense of being the only one. Thanks to these charities she can be totally and utterly normal, she’s one of a select club. Don’t get me wrong; to me she’ll always be unique and all the more amazing for it. But for her, when she wants to fit in and when she doesn’t want to stand out anymore, she doesn’t have to. Which, if Reach offered us nothing else, would still be enough.

A map book for the future

Reach, its website and its community, offers new parents of limb-different kids something of a road map. A heads up on what to expect and what really isn’t worth worrying about. One of the highlights in September was seeing parents sharing photos of Reach kids on their first day at school. To see those beaming faces, heading off to school with nothing but excitement (and maybe a few nerves) was wonderful for us who have all that to come and for whom school still seems like a big and a terrifying milestone. If we have any questions about hobbies, activities or even about driving (as far away as it is, the idea of Hero as a grown up is currently a banned subject in our household), Reach offers a wealth of experience and information on almost anything that might affect our children’s lives.

Adaptations

When we found out about Hero’s hand my husband was particularly upset, for many of the reasons I’ve blogged about before, but also because he’d always dreamed of sharing his hobbies of hockey and violin playing with his children. Now I know that kids don’t always do what we might like them to and even with two hands, Hero might have scoffed at the idea of trying either of those things. But to feel like he didn’t even have the opportunity to try was pretty hard. Enter Reach and all the Reach kids who have come before us and who have played their way to success both in the music room and on the sports field. Reach has shown us that anything Hero wants to do is possible. It might not look the same as when a two handed person does it, but it’s still a possibility. Assuming that’s what she’d like to do of course. If she’s anything like her mother she’ll prefer digging about in the dirt and wading in rivers to actually improving any skills she might have!

Community

For me, and I think for Hero too in the future, the Reach community is worth its weight in gold. We meet up with other local families two or three times a year and regularly keep in touch online. For the parents it’s an opportunity to touch base with others, to field any questions or concerns to a group of people who totally and utterly get it. Even if they don’t feel the same way you do, they understand it. You won’t find anyone else who gets it quite like your Reach friends do. They’ll reassure you when you need a lift, they’ll commiserate when you’ve had a knock and they’ll tell you gently that you’re overreacting when the tiny little things make you snap. And for Hero, they’re a group of people around whom she’s no longer the odd one out. Around whom she won’t ever feel the need to hide. These will be kids who she’ll grow up alongside will be her allies, her friends and her role models. She’ll be able to rant with them and compare stories and, like their parents, they will just get it.

I distinctly remember a moment of despair, not long after we’d found out about Hero’s hand, at the idea that our lives would be intrinsically tied with this charity forever. What an idiot I was. We probably will be involved with Reach for the rest of our lives, but that is going to be no hardship at all. That worry, along with all the others about Hero’s ability and wellbeing, has been trashed over the last year. I am incredibly lucky and proud to be a part of the Reach family and only wish everyone had a community like this with whom they could completely and utterly fit in and belong.

So I wanted to say a big thank you to Capital FM, not only for showing us around a radio studio for the first time, but also for making some noise about the little charities like ours. For raising awareness, among the general public but also in myself, of the subtle but dramatic job that Reach (and charities like Reach) do and the huge but often-overlooked impact they have in families’ lives.

Make Some Noise

You can hear snippets of our interview and learn more about Reach and Make Some Noise by tuning it to Capital FM South Wales 97.4 – 103.2 fm or visiting www.capitalfm.com/southwales/radio/ for the breakfast show tomorrow (Friday, 6th October 2017) between 6am and 10am GMT.

Make Some Noise in the comments section below: How have little charities impacted on your lives?

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#Itsabilitynotdisabilitythatmatters #LuckyFinsRock #Tenfingersareoverrated

 

 

Now I am one

Now I am one

Our little lucky fin is coming on in leaps and bounds. She turned one this month and has developed a love for books, dogs and standing up unaided.

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She’s been developing fine motor skills with her left hand, turning pages on board books, picking up little bits of food etc. Despite this, she is a little behind her peers on hand-related milestones. She doesn’t point, wave or clap yet, but it’ll come when she’s good and ready and in the mean time you should see her holding multiple toys like a pro!

Perhaps one of the biggest surprises for us, is that she’s started using her right foot in lieu of her hand sometimes. This was picked up by the paediatrician a few months ago, but at the time I wasn’t completely convinced. I didn’t think she’d need to use her foot because she has a full arm, but it’s very difficult to ignore now. She’s got a baby laptop and uses the mouse, which is on the right hand side, with her foot rather than her lucky fin. She was banging and spinning her drum with her foot today. Although I’m yet to successfully catch her on camera!

We’ve been thinking a lot about representation too. Confidence in the face of unwanted attention is something I’m keen to build in her from the start. I never wanted to stand out as a kid and, as she’s not really got the option of blending in, it’s important that she feels equipped to deal with any questions or comments. After a few difficult incidents (you can read about those here and here), it became clear that I too need to find a way of dealing with these experiences. In the soft play a few weeks ago a girl grabbed her little hand and pulled it towards her to look. I’d love for our lucky fin to be able to handle situations like that with grace and assertiveness. Seeing people like her on TV, in magazines and in regular play dates with our wonderful local Reach family are all a huge part of that.

Toys too are a key part of a child’s life, and youngsters should be able to see themselves represented in their play things. I have to admit I’ve wondered if melting the hand off a toy doll would be an effective way of making it like her. Although this is a rather gruesome contemplation at the moment and I can’t help but think of Sid from Toy Story! However, she received a gift for her birthday last week, which needed no modifications.

Please meet out first lucky fin dinosaur, who was made bespoke with a limb difference just like our girl’s!

Even though she’s probably not aware even of her own difference yet, let alone the dinosaur’s, she was still fascinated by its arms.

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I really look forward to using her lucky fin dinosaur, as well as some of the awesome picture books we have, when her questions start coming.

Finding the perfect response to an imperfect situation

Finding the perfect response to an imperfect situation

A few weeks ago we had a pretty unpleasant experience when a group of people laughed at Hero’s little hand. It was a group of adults, and they actually laughed. What made it worse was that they had a child with them who, following their example, strained across to stare as well.

Hero had been sucking her little hand like a dummy. It’s happened before, when someone reacted with innocent wonder at the idea that she could somehow fit her entire fist into her mouth. It’d certainly be some party trick if it were true! Only, on that occasion, the person in question had the decency to be deeply apologetic when they realised that she didn’t actually have a fist to fit in.

Unlike that previous time, this one was a whole different kettle of fish, causing a cascade of emotions that knocked me for six for a while and seemed to encompass a whole spectrum of bewildering feelings.

Disbelief

When I first noticed them laughing and pointing I just stared in horror. I couldn’t believe what I was seeing. Surely, surely, people don’t still do that kind of thing? The world’s moved on from the medieval times, when being different singled you out. Now we have disabled presenters on TV, we have a whole raft of paralympian role models. We have no room in our lives for ridicule and prejudice like that anymore.

And then of course you have to ask, what exactly was funny? What could possibly be funny about child who was born without a hand? It’s not tragic. It’s not terrible. It’s not even bad, despite what they might think, but it sure isn’t funny.

Rage

This one is obvious. I couldn’t just stand by and watch someone ridicule my daughter. I was obviously going to march right up to them and say… what exactly I would have said in the theatre of my mind, I don’t know, but it involved a lot of gesticulating and unrepeatable words.

Needless to say, I didn’t march across the restaurant and start swearing blue murder at these people (although a tiny piece of me wanted to). My intense hatred of conflict aside, I tried to picture Hero doing that. I pictured her marching up to someone, her face contorted with rage, reeling off a load of swear words and giving them what for.

What a horrible thing to imagine. That aggression and that anger is the last thing I’d want Hero to parrot. And we are, despite not having a clue what we’re doing, her biggest role models. She will look to us for how to react in these situations and I won’t teach her manners as poor as those who were laughing. We don’t want her to have to live in a world where feeling that level of rage is the norm. Right now, she’s so innocent and sweet and lovely. To see that level of anger and rage mirrored in her face would feel like the end of her wonderful childlike innocence.

Heartache

I’m not sure what word to use in this context. It’s not grief, but I’d be lying if I said my heart didn’t ache. It did. A lot.

It was heartache at learning that someone could be so utterly cruel to my beautiful, talented and just all-round awesome child, that they could be so cruel to anyone’s child. It was heartache at realising that, despite having been lulled into a false sense of security, she is going to have to deal with incidents like this throughout her life from time to time. I dread the day when our wonderfully happy child, who loves almost everyone she sees, realises that somebody is laughing at her or judging her unkindly. It was the understanding that she will have her own demons and insecurities to overcome and that, no matter how much we build her up, idiots like that might be able to knock her down in a careless second.

Understanding

After a ten-month honeymoon period, after ten months of hearing nothing even slightly unkind, to learn that this stuff will happen was frightening. And worse than the knowledge that this kind of thing might happen, is the fact that we will have to deal with it when it does. We can’t deal with it how we might want to, as over protective and instinct-driven parents. We have to deal with it in a manner that we’d like to equip her with. We need to model a response that shows her how to take the moral high ground.

Although we might want, even if just for a second, to leap hell-for-leather off of that moral high ground and drag any unkind and insensitive soul into the mud – we just can’t. Although we might want to just cry hysterically and let those people make us feel  less than we are – we just can’t. We have to be better than that, because she deserves better role models than that.

We want her to know that it’s ok to feel upset, that it’s ok to feel angry from time to time, but that you cannot let those emotions rule you and dictate your actions. You can wallow when you need to, but you shouldn’t make decisions that you might regret based on those flashes of red.

What happened next…

In the end we chose to walk away. I hung back, allowing the party to depart before us so that we didn’t have to bump into them on the way out. By the time we got to the car I was shaking and crying as all of the above started to rush about my head. I didn’t know how to react then and I still don’t now, because I’m not just responding for myself anymore, I’m responding for Hero as well. That complete immobilisation is something we as a family now need to find a solution to. Will we come up with some choice educational phrases or will we simply learn to ignore it? Is there a perfect response to an imperfect situation?

Finding an answer to this is made a little more complicated by us both approaching the situation from entirely opposite directions. My husband wasn’t as upset as I was and, from his foundation of self confidence, he won’t ever be as upset about that kind of experience as I will. He’s much more able to separate himself from the unwanted opinions of unknown people, whereas I will always take them deeply to heart. His upset will come on the day Hero understands what’s happening, the day she is upset is the day he’ll be upset, where as I will feel it all in advance as well.

It’s taken me a few weeks to process what was a few short minutes of experience, to distil it into something I could put into words. I too wanted to follow my own advice; I didn’t want to commit my flash of rage and deep upset to the pages of time. I wanted to slow down, to take a step back and to understand what had really happened. Initially people told me to feel sorry for the people in question, but a few weeks ago I simply couldn’t do that. Time is a miraculous soother, however, and I now see the point people were making. How much poorer their lives must be, as well as the life of their child, living in the world of intolerance they’ve created. At the end of the day, it’s their loss and not ours. At least, that’s what I’m telling myself.

Perhaps more helpful to remember, both for Hero and for myself, is that for every one person who is mean or insensitive, there are hundreds of thousands, if not more, who are are accepting, curious and kind. May the odds be ever in our favour!