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.

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.

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.

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.

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.

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.

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.

#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.

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.


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!


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.


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!


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 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?

#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.


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.


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.


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.


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.


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.


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!




Sticks and stones

Sticks and stones

Some times you’re cruising along, as happy as Larry, when something someone says hits you right out of the left field. Some times you don’t even realise until much later, that the words have sunk deeper than you could have imagined and caused a rush of emotions you never expected.

Until recently we’d been incredibly lucky to have never been on the receiving end of any negative or hurtful comments about Hero’s hand. We have had a few flippant comments (“At least it’s just a hand!”), but generally her lucky fin has been met with curiosity, wonder and affection. The outside world, as well our circle of friends and family, has always been a reflection of my own outlook and the outlook we hope to foster within Hero.

This weekend, for the first time, I’ve been really shaken by something someone said. The comments came from a child, and I think were both innocent and well meaning. She was just making an observation and a judgement, as children do and probably adults as well. At the time they were spoken I didn’t really react, I brushed the comments aside with a joke and thought nothing more of it for the rest of the day.

Then I got into bed that night and those sentences kept coming back again and again. I just cried. My heart ached because I realised that I can’t protect her from comments like that. As she grows in independence and confidence, as she spends more and more time away from us, I can’t just hold her to me and shield her from things the world might say. Nor should or would I try to do so, as much as my emotions might protest.

I can’t walk up to every single man, woman or child that might come across her path, grab them by the collar and say, “please don’t hurt my child.”

I hope that we, her parents, her family and her friends, can instil within her such a sense of stability and self worth that these comments will just roll off her like water from a duck’s back. Because they certainly don’t roll off mine. The experience has taught me that I need to come up with a response. I’m a writer, not a speaker, and have always needed time to process my thoughts and reactions. Only now I may need to create a stockpile of responses which are both affirming and educating so that I can turn these comments around into something positive. Isn’t that what I’d like Hero to be able to do after all?

I hope that she never feels the same heart ache those comments have given me. I hope she can laugh right back at them knowing that she might look different but that’s ok. That’s more than ok. To the people who matter she’s perfect.

Nothing to see here

Nothing to see here

I was asked recently why I hadn’t done a blog post in a while and I had to think about my answer for a moment. It took me a while to realise that the reason I haven’t blogged is because Hero’s difference has barely been noticeable over the past month or so.

There was that memorable incident when our little problem solver learnt to get her lucky fin out of her car seat harness on the M4 motorway last month. That was fun. But it was the Reach community to the rescue and, after some trial and error, we managed to stop the problem becoming a regular occurrence with the judicious use of some Velcro.

I will not be restrained!

There was also the moment I felt a bit over sensitive in a baby group when we were singing about having ten fingers… yet again. That felt a bit rubbish, but mostly because I wasn’t sure how I should model a response for Hero. Reach community to the rescue again!

But despite these little things going on and some major changes happening over the past month, including me going back to work part time and Hero starting nursery, we’ve barely noticed her difference.

That says a lot I think. It says a lot about how far I’ve come on this journey, and it says a lot about how determined and smart our little girl is.

She learnt to climb the stairs on her first attempt. She spends countless minutes trying to figure out how to clip the two pieces of her highchair harness together. She’s learnt how to pull toys on string closer to her, by looping the string around her little arm and creating a pulley.

FullSizeRender 60
Top of the stairs: I can climb mountains

It was only after I walked away, having dropped Hero off for her first trial session at nursery (and after I’d stopped crying), that I realised we hadn’t discussed her little hand at all with the staff. It simply didn’t come up. It didn’t need to be mentioned. We talked about nap routines (ha!), we talked about foods she liked to eat and things she liked to play, but we didn’t talk about her hand. She doesn’t need help feeding herself finger food. She doesn’t need help with her sippy cup. She doesn’t need help manipulating toys and moving about the place at high speed. She simply doesn’t need help.

She might not always do things the traditional way, but she’s wasting no time in finding her own way. And, as I’m learning to appreciate when it comes to annoying baby songs, ten fingers really are overrated!