A lucky fin family tree: Great-great-grandad and his left-hand hook

A lucky fin family tree: Great-great-grandad and his left-hand hook

We have received a great number of blessings as a result of our daughter being born with a limb difference. The biggest and most significant, of course, being the sheer joy our daughter brings to us every single day. I do worry sometimes, if I’m this proud of her simply for picking up a sippy cup, or eating a yoghurt, what on earth will I be like when she starts making more significant achievements? But oh what a wonderful worry to have!

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Though she be but awesome!

Another huge, and unexpected positive, has been in joining the limb different community. It’s truly awesome; open, welcoming, accepting and uplifting! I’ve made friends near home, and friends half way across the country and even some friends on the other side of the world.

A third thing that came out of our limb difference experience has been in getting to know a little more about my great-granddad. John died two years before I was born and I never got to meet him. I should have asked more questions growing up, but at least I’m asking them now. It wasn’t until we told our family the news about Hero’s difference that I found out that my great-granddad had also been missing a hand.

I’ve no doubt that having been raised by a man who was also missing a hand, yet never let it get in his way, really helped my own granny to worry less about Hero. Being part of the limb different community is amazing and gives Hero friends and peers her own age with similar conditions to her’s. But imagine finding out that one of her ancestors lived life the same way she does. He held his cups the same way she does. I wonder what advice he would have given Hero?

In his absence, I decided to try and build up a little bit of a picture about the man who came before us (I can only imagine what kind of face he would have pulled if his ‘stump’ had been referred to as a lucky fin!). I’ve spent time chatting with my granny and my dad about him and have created a memory book that I hope Hero will look back on with a sense of affinity and belonging one day.

 

The making of a lucky fin

John Knight was born in 1902 with ten fingers and ten toes. At the age of 17 he applied to join the army and made it through all the medical checks. To pass the time between his medical assessment and his joining date, John worked as a labourer on a local farm.

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John Knight, Hero’s great-great-granddad

He was bailing hay one day when things didn’t quite go to plan. He fell and instead of grabbing hold of a ladder rung to stop his descent, he accidentally seized the blade of his bailing knife instead. My favourite part of this horrific story, which still makes me cringe, is that in true style John didn’t wait around for help. He got on his bike, with his left hand hanging off, and cycled the few miles to the hospital himself!

 

The evolution of prosthetics

One of the most exciting things about having a child with a limb difference is in watching the phenomenal leaps and bounds being made in the field of prosthetics. From the 3D printing champions making hands on a budget, to the high end six figure bionic limbs that are gaining ground in the media. I look forward to the day I get to be a little be envious of Hero because of the awesome gadgets she has!

Back in the first half of the twentieth century things obviously weren’t quite as advanced, but that didn’t make new adaptations any less exciting for Great-Grandad. Usually he used a hook on the end of his arm but one year he was given an upgrade to a prosthetic hand where the fingers opened and closed to grip when you pulled a chord attached to the mechanism. According to Granny he was super proud of his new adaptation and maybe even a little cocky.

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John on Brighton beach, with his prosthetic hand

There was a memorable time when she got on the bus with him and his new arm. He put  put the ticket money into the palm of his new hand and when the conductor came around to collect the fares John took great joy in popping the hand open using the chord. My granny said she thought the conductor nearly died of shock! That’s exactly the kind of humour that I hope Hero will channel. I hope she’s proud and takes joy from her difference, even if it’s maybe at someone else’s expense from time to time!

 

Three hands, two wheels and a hook

Most of the stories my granny had to tell me about Great-Grandad John were hilarious. They demonstrated his sense of humour and fun as well as his complete lack of self-pity despite experiencing a life changing accident at such a young age.

One of my favourite stories involved a tandem bike that my granny and gramps used to own. One day John and his son in-law, Barry, were cycling on the tandem. Barry was going a little too fast for John’s liking. Unfortunately, without a hand gripping onto the handle bars was impossible and John’s hook kept sliding along the handlebars and pinching Barry’s backside. Far from making him slow down, Barry shouted to John to watch what he was doing with that hook and to just keep bloody peddling!

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John was apparently a master at cigarette rolling. Even his two-handed peers used to marvel at his speed and accuracy! Who needs ten fingers?

Hanging on by a hook

Some of the stories I heard are easy to laugh at now, with the benefit of hindsight, but were probably pretty terrifying at the time (pinching your son-in-law on the backside while speeding downhill on a tandem bike is probably one of those from John’s point of view!). This next story, which also involves John’s hook, is one of those.

Since he was no longer able to join the army after losing his left hand, John carried on his work as a labourer – nothing as trifling as a missing hand was going to stop him! One of these jobs was in the quarry of a cement works. On one memorable day John was standing on the back of a lorry, levelling the sand out ready to be delivered to the cement mixers.

The driver of the lorry was a bit over enthusiastic that day and set off driving, without realising that my great-granddad was on the back. Unsteady on the mound of sand, John fell but his hook caught on the railing of the lorry and he was dragged across the quarry, unable to let go. The other workers around the site ran along side and started waving and shouting at the driver to stop. Not realising the emergency he waved happily back at them and went on his merry way, taking John with him!

Luckily for everyone, the driver had to stop at a checkpoint before leaving the quarry and John was unhooked from the railings before he could he dragged further down the road. The story was really entertaining when Granny told it to me, but somehow it seems a little more alarming now I’m writing it myself! I’m sure it was one of those things that you could look back on and laugh about, but could have had an awfully different result. When you take into consideration his initial accident, coupled with this event in the cement yard and many others I’m sure, he certainly seemed to be a man of nine lives and lived every one of them to full.

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John, with a sock covering his stump

It’s ability not disability that matters

One of the key things that came out from hearing all these wonderful stories about Hero’s great-great-granddad was how, day to day, his family and friends didn’t think anything of his limb difference. It just didn’t seem to be a big deal, because he didn’t make a big deal of it himself. As Granny put, in his later years he would simply put on his hook and head off for a busy day at the allotment with his trusty terrier sitting a ‘top the wheelbarrow.

One lady who John worked for in his retirement wrote to my granny after he’d passed away in 1984. She was incredibly forthcoming in her praise for his personality, determination and manners after she had gotten to know him well while he worked on landscaping her considerable garden.

“Needless to say, I was a bit uncertain when he only had a hook instead of a left hand but I was so taken with his wish to be useful and his clear determination not to be “retired”, that I decided to chance it. Of course, I found out in no time that I hadn’t taken a fumble, I had made a bet on an absolute cert.”

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Proudly displaying his Garden of the Year award #TenFingersAreOverrated

Throughout his life he was husband, father, labourer, almost soldier, darts player and gardener, among a myriad of other things. He’s been described as a bit of a monkey and a rascal, using his stump to create humour and to make people laugh. Such a stunningly happy man, who was often laughing and chuckling. These labels aren’t always associated with the stereotypically negative idea of a disabled person. There’s a reason that I don’t describe Hero as having a disability and that’s because she obviously and palpably doesn’t. She might have to go about things a bit differently, she might even struggle with some things, but she’ll do them.

My granny could think of one thing, and one thing only, that her dad struggled to do with one hand and that was taking heavy and hot dishes out of the oven (before the proliferation of oven mitts!). That doesn’t seem like a hugely limiting challenge to me, and with perseverance he found a way around that too.

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John, front row third from the right, with his darts team

I know that her great-great-granddad wasn’t born different, as Hero has been, but his attitude against having only one hand, in a decidedly two handed world, is something that I deeply hope has carried down through the generations. If she’s having moments of doubting her ability, I’ll be sharing the stories of John with her and letting her know that she’s not the first to be different like this and that through family memories, hilarious stories and through the communities of which we are blessed to be a part, she certainly isn’t alone.

 

 

 

 

 

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.

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.

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.

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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.

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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!

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#tenfingersareoverrated

 

Milestones: Cruising for a bruising

Milestones: Cruising for a bruising

The world just got a whole lot bigger for Hero and things just got a whole lot more interesting for us: Our lucky fin baby mastered crawling last week.

By this I mean, crawling forward, not the backwards shuffle she’s been perfecting for the past few weeks. It’s been an amazing process to watch her figure things out and she found it a lot quicker to master coordinating her arms than her legs. So much so that for almost a month she’s been pushing herself backwards, without understanding quite how she was doing it or why. The look on her face as she got further away from her intended destination was a picture!

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The past week she’s been building up to going forward, inch by calculated inch. It started off with her learning to get her knees up underneath her and from there she moved on to dive bombing onto her tummy in order to reach her goal. She’d been teetering on the edge of the forward movement for so many days I banned anyone from putting her on her tummy when I wasn’t in the room. I’ve been with that girl almost 24/7 since her birth and damned if I was going to miss this huge milestone!

I’d like to take a closer look at the impact Hero’s lucky fin has had on the process of her learning to crawl, but as she’s our first, we’re new to the whole thing and really can’t comment. We are so proud of her for smashing this milestone after being advised during pregnancy not to worry if she missed or was late in achieving certain milestones. Nothing, nothing at all, could have been further from the truth.

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That’s not to say that it’s been easy for her and, while she’s mastered this milestone like a pro, she’s got a few bumps and bruises to show for her efforts. Her lucky fin might not be holding her back, but not having a hand does have its disadvantages when trying to lean forward on that side. All too often she’s tumbled over the top of her lucky fin and face planted on the ground. She never falls over her left hand; it’s only ever over her lucky fin. As a result, we try to contain most of her crawling on a soft mat at the moment and the poor kid has been sporting an almost permanent bruise on the right side of her forehead for the past week, which she seems to update as soon as it’s faded. It only ever happens when she loses concentration or gets distracted from what she’s doing for a moment, so I don’t think it’s a phase that will last long!

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Mr Bump!

Watching her figure things out in her own sweet way and watching her trial and error what she can do, is so humbling and exciting. She’ll learn, she’ll work out how to use her little hand differently, and she’ll keep on smashing through those milestones still to come.

Proud

In leaps and bounds, life finds a way

In leaps and bounds, life finds a way

It’s difficult now to think back to those days of worry and fear we went through during my pregnancy. It’s getting pretty difficult to worry overly about Hero at all. While she’s had some weight gain struggles and has slid down on that dreaded chart, about which we’ve fretted endlessly, in every other way she’s absolutely thriving. Over the past month or so she’s transforming before our eyes into a bright, bubbly and engaged baby who is clearly  a very capable little girl. Almost every day she takes yet another of my worries and knocks it out of the park.

At the beginning of the month she completed her first term of swimming lessons. She’s never more relaxed than when she’s in the pool and as the term progressed she’s developed the use of her lucky fin more and more each lesson. When she first began the Aquatots Duckling course, at four months old, she refused to use her little arm in the pool, clamping it to her side instead. With some gentle coaxing from myself and her wonderful teacher, she has learned to use it just as much as the other. Now when we splash up and down the pool she’s stretching out with her right hand just as much as her left. She doesn’t use it to splash the water yet, choosing to make waves with her left, but it’s only a matter of time.

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A Duckling Graduate

Then there are the toys. Watching her play it’s been painfully obvious all along that, contrary to what many people said, she does know that something is missing. We’ve watched her reach out with it, only to fall short. We’ve watched her try to clasp things in her little hand only to hit thin air. But we’ve also watched her learn what she can do. She’s started hooking toys over her little hand, she’s grasping things in her left and exploring it with her right.

The introduction of the sippy cup into our daily routine was yet another cause for concern. I spent goodness knows how long in the shop picking up and examining the many (many!) sippy cups they have on offer. Which ones would be easiest for her to hold? Which could be grasped one handed? Which was light enough for her to lift?

And you know what? Surprise, surprise, I needn’t have bothered at all. By her third attempt at the sippy cup she was picking it up in her left hand and hooking the other handle over her right, holding it and lifting it as if nothing was amiss.

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The Sippy Cup Master

I realise now that when people said to me “she won’t even know it’s missing”, what they really meant was: she’ll find a way. Each and every day she finds yet another way.

My favourite quote from my favourite film is, “life finds a way”, courtesy of Ian Malcolm in Jurassic Park. I love it so much that the line became part of the artwork on our wedding day: Love finds a way. Now here’s my daughter, showing me every single day that in every single way life really does find a way. Despite all my anxiety and all my fears, she couldn’t be more perfect, more bright and in possession of a prouder mother.

Little kisses for a little hand

Little kisses for a little hand

Before Hero was born I was often told that she wouldn’t even know her right hand was missing. That she wouldn’t know any different. I’m not entirely sure that I ever fully believed that. Yet there was a part of me that felt that she couldn’t miss what she’d never had, right?

But as she storms past the three-month mark (time, slow yourself, please!) it’s abundantly clear that she does know something is missing, on a subconscious level at least.

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Feeling old!

Last week, seemingly over night, she learnt to reach out and grab at toys dangling in front of her. One day she was batting aimlessly, and often missing, the next she was reaching out with calculated aim and grabbing hold. All the while this little miracle was unfolding before my eyes her lucky fin remained resolutely tucked against her side, as if she’d just buried her hand in her pocket. It was as if she knew that her right hand couldn’t grab. As if there was no point to using it at all.

As is the wont of new mums, I panicked. Surely, as so many people had told me, she shouldn’t be using it any differently. She shouldn’t know, right? The wonderful Reach community came to my aid, as they always have, and other parents reassured me that their children too went through a time of not using their lucky fins as infants. They reassured me that a time suddenly came when their little one figured out that, while they couldn’t use their lucky fin in quite the same way, they still could use it and to great effect.

So I guess I need to wait and see, to relax back and let her do things in her own way and in her own sweet time. She’ll find her lucky fin sooner or later and there’ll be no stopping her when she does I’m sure!

In other news, Hero had her first experience of the cinema this week. Thank you so much to Odeon who put on a baby-friendly screening of the latest films each week. As dumb as it might sound, the cinema is one of the only things I miss from my pre-baby life, so learning that I could simply take Hero along too was the icing on the cake!

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Movie time.

Hero was a trooper all the way through! She watched the first fifteen minutes of A Street Cat Named Bob with her wide bush-baby eyes, then had a nap on my shoulder through most of the emotional turmoil. We spent the last ten minutes standing up by the door to watch the ending, as she’d had enough of sitting still by that point, but all in all it was a resounding success and I can’t wait to see the all-important Fantastic Beasts and Where to Find Them in a couple of weeks!

As the other cinema goers were leaving, an elderly lady who didn’t speak much English passed us. She stopped to chat to Hero in Japanese for a bit, telling me in broken English that Hero had been really good throughout the film and how sweet she was. The lady reached out to take Hero’s hand and then hesitated a moment when she saw it was missing. The lady’s face then broke into the biggest smile and she bent down to give the lucky fin two tiny kisses. Then she looked Hero in the eye and told her she was beautiful.

I’m not sure if it was the uplifting ending to the film or if it was simply being privy to such a special moment between my daughter and a complete stranger, but I left the cinema with tears in my eyes and a heart like a helium balloon.