Facing my fears: Thinking about school

Facing my fears: Thinking about school

Sometimes things just seem to fall into place and what we were once afraid of doesn’t turn out to be so serious after all. It’s a bit like waking up in the morning after an all-consuming fear has hijacked your night, only to discover that the worry isn’t quite so mountainous in the morning light.

I might be thinking ahead a bit, but the idea of my eldest daughter starting school for the first time next year scares the hell out of me and, in all honesty, it’s not just because she’s missing a hand. I’m sure that I would feel the entirely the same no matter how many hands she had. However, there’s no denying that your child having a visible difference can magnify or exacerbate these totally normal worries.

Not only is my summer baby heading off to school mere weeks after she turns four next year, meaning that her baby sister and I will miss her horribly during the brightest hours of the day, watching her walk into school for the first time will be akin to watching her walk out into that big wide world.

The world is full of wonders, adventures and beautiful moments, but it is also full of unkind words, fear and upset. Sadly I know all to well that if I even think about trying to protect her from the bad then I would be robbing her of much of the good as well. Knowing that, however, doesn’t make the prospect any less daunting!

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Venturing out into the world

I’ve been known to be a bit hyper vigilant from time to time when I’m out and about with Hero, sometimes this has been a misplaced awareness and on other occasions my caution has been bang on the money. Sometimes kids have stared, or grabbed at her little hand in order to get a better look. Sometimes they’ve asked blunt questions and I’ve had to step in as she wasn’t old enough to stand up for herself. I’ve often worried about whether I’m responding the right way or modelling the right reaction to her, but wondering if I’m doing it right is less frightening than the idea that I won’t be there to do it at all.

Living in a beautiful bubble

To my overprotective mind, sending her out into the world is leaving her open to the influences of others. She lives right now in a bubble of friends and family who all love her very much and who don’t even notice her hand. Her hand isn’t ‘a thing’ at the moment and the irrational side of me wishes it would never be a thing. Opening her up to the opinions of others means accepting the possibility that someone might hurt her. I know that these are fears that many, if not all, parents share when it comes to their little one’s growing independence. We all want our children to be happy, to be liked, to be accepted.

I know all too well that I can’t stop any hurtful things from ever happening to her, even if I did hover over her like a helicopter (which, for the record, I don’t), but the idea that someone could and might make a comment about her hand – about the one thing she has no control whatsoever – makes my heart plummet.

With the view of allaying my fears (Hero’s not worried at all of course – she doesn’t even know what school is yet and naturally, she would love to go if she did) we decided to visit our local school last month. She currently attends a wonderful nursery in the town where her dad and I work. She loves it there, but she’s not with children who will be in her catchment area when the inevitable happens and she starts school in 2020. So as things stood, starting school would not only mean a change of venue and a change of friends, it would mean meeting a whole new community of people to whom her hand might have been a surprise.  To my mind, the idea of starting school with an entirely new cohort was going to make my worries for her worse and possibly her own experience more of a challenge.

So off we trundled to our local primary to tour the school and also to visit the preschool that sits alongside it.  The vast majority of the preschool children go on to attend the primary– so for us that meant that Hero would be making friends with her future classmates; children who are currently too young to care that she might have a difference. If she could start school with friends who already knew her, then I felt it would be half as scary for both of us!

Fabulously unfazed

As part of our tour of the school, we wove our way between the flock of chickens and the duck with the wonky wing that roam the playground and made our way into the reception and year one classroom. The children stopped to look at the newcomers to the room and as we crossed the floor to the door on the other side I felt a bit like a goldfish in a bowl. One little boy in particular stared at Hero at she passed. He kept staring, turning his head in comic slow motion to follow her progress across the room. I had that little bristling feeling, like an angry bird puffing up my metaphorical feathers and getting ready to square my shoulders. Just before we reached the door, this little boy stepped forward, crouched down and patted Hero on the head.

“Well you’re super cute, aren’t you?” he said, beaming at her before skipping back to his table.

I couldn’t help but grin. I’m not sure I’ve met many cuter kids than that lad! He was so brim-full of welcome and delight at the small person who was even smaller than himself, totally unfazed by any differences.

Right before we left the room I spotted one little girl with a vibrant pink brace on her left leg and there was another with a colourful headband holding her cochlear implants in place. So Hero was far from being the only one with a visible difference. Those children and that little lad were welcome reminders that personality shines out far more than any physical difference.

The things they don’t see

A little later on our tour and Hero was hanging out in a tent with another little girl who already attended the preschool.

“Look at that!” the little girl said to the nursery manager.

“Yes, that’s the new girl,” the manager replied.

“But she…” The little girl frowned and looked intently at Hero, clearly puzzled. My feathers started puffing up again.  It’s almost impossible not to feel a little on edge when these conversations happen; inevitably all those kind sentences and snappy one-liners that you came up with at home immediately abandon you.

“But look…. but…” the girl was having trouble articulating the problem she was having with Hero. Even the nursery manager was looking a bit unsure now.

And then she at last burst out; “But she’s got short hair! I’m a girl and I’ve got long hair and so does Sarah!”

And there it was again, another little one – in the school we were thinking of sending our daughters to – who just didn’t see Hero’s limb difference. They didn’t see odd, they didn’t see unusual. They saw cute and they saw style choices that have little consequence.

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All I need to know

When I got home that evening, Hero’s dad asked how the tour had gone. He asked if we’d talked about her hand at all and it was only then that I realised – it hadn’t come up in conversation once. Somehow I had always imagined needing to explain it to her teachers or discussing how we’d like it handled. Yet when the time came I hadn’t needed to ask any questions, I hadn’t needed to bring it up at all. The response and reaction from the children in the school and the nursery were enough to tell me all I needed to know about that place.

And just like that, my worries about Hero starting school suddenly came out into the daylight and found they weren’t as big as they’d been pretending. After one tour, where Hero asked to be left behind while her sister and I went home, I had gone from fearing the oncoming march of time to actually looking forward to it.

Now when I think of school I think of the excitement she’ll feel going into the classroom for the first time, running out to play and meeting her new teacher and friends. I think of how darn cute she’s going to look in her school uniform and of all the wonderful things she’ll learn while she’s away. I no longer seem to fear the unknown assailant who might cast a flippant comment her way. Sure, it might still happen. But somehow, I just can’t see it happening at that school, in that community. Not the one with the duck with a wonky wing waddling about the playground and greeting the children as they come in.

 

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This hand and that hand: What is awareness in a young child with a difference?

This hand and that hand: What is awareness in a young child with a difference?

“She’s not even aware she’s different yet.”

It’s a phrase I both hear and have said quite often as the parent of a toddler with a limb difference. Recently though, I’ve started to question that statement and to wonder just how aware she is and what that awareness really means.

Last October was the first time she acknowledged openly that her hands might be different from one another when she referred to them as Baby Hand and Mummy Hand. Unsurprisingly, that first moment took place at the Reach Family Weekend, where it is totally normal to be a bit different.

She’s barely made reference to it again since then, slipping easily back into our normality at home where her limb difference isn’t anything outside of the norm. I’d returned to thinking that she doesn’t find her different hands overly noticeable or noteworthy, to the misconception that she wasn’t aware.

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This hand and that hand

Yet, recently I’ve noticed quite a change in how she likes to play with her toys, or more specifically, how she would like me to play with her toys alongside her.  Usually, she is satisfied for her and I to have one toy each, but lately she’s started to insist that I hold two toys to her one.

“This hand,” she will say, passing me a toy. I start the game, but before I can get anywhere she’s pushing something in to my other hand (which is usually occupied trying to prop up her little sister who is just learning to sit) and repeating, “This hand, Mummy. This hand!”

She knows. There’s no getting around it and no explaining to her that I’m using that hand for something else, no hiding it beneath a cushion and definitely no taking a cheeky sip of my drink while we play. She knows that I have the capacity to hold two toys and she would prefer it if I didn’t shirk my duties or otherwise waste the luxury of my second hand by drinking or holding up babies!

What she doesn’t show is any confusion, any sadness or any frustration. It is a simple fact that Mummy can hold two toys and she can hold one. There’s no apparent concern that we might be different or that she is in any way hard done by in light of this fact. It simply is what it is.

When she first openly acknowledged her different hands, back in October at that Reach weekend, I felt a bit emotional at the pronouncement. I didn’t feel choked up because she was showing any sadness, she was just stating a fact. I was choked up because I wasn’t sure that I was ready or prepared for her to know. But she knows already.

The statement “She’s not even aware she’s different yet.” is becoming more and more obviously redundant. She totally knows she’s different. She knows that she has a little hand and a big hand; Mummy Hand spends enough time rocking Baby Hand to sleep beneath a kitchen roll blanket!

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What she doesn’t know

What she doesn’t know, more to the point, is that the world might not be designed with her one hand in mind. What she doesn’t know is that some activities might be a little bit trickier for her. What she doesn’t know is that some people in the world might think her difference is something to be pitied, or feared, or mocked.

It’s the difference, as my good friend put it when I tried to verbalise these thoughts, between her being Aware, with a capital A, and her being simply aware. The awareness is that one hand is not the same as the other, or that Mummy has two hands while she has one. It is that and nothing more. There is no sense that things should or could be anything other than what they are.

Molly Stapleman, founder of the Lucky Fin Project and tireless champion and supporter of the limb different community, said it best when she said:

A child born with a limb difference is whole. They have not lost anything for this is the way they were born… They are equipped with the instinct to do and learn to do what they want to do; find comfort; hold a bottle, play, crawl, climb, walk. There is no self-concern with how they look. People often say our children “adapt so well”, but as a baby it is not about adapting because it is all they have ever known. There is no altering of what they would have done- it is simply a matter of what they WILL DO with what they have. Our children were born physically different but also with the innate ability to meet and conquer each task and challenge that comes their way long before they can even recognize what is viewed/assumed as a challenge by others…

– Molly Stapleman, Luck Fin Project founder

Any sense of negativity my daughter might have about her hand surely won’t come from her, it shouldn’t come from us as her parents, or from her friends and family. It will come, if it does, from a sense that others might project on her, that sense that she is someone who stands apart from the rest, that raises curiosity or concern, someone who simply looks a bit different.

 

Capable and wonderfully made

The sense of confidence she currently holds is something I dearly, dearly hope she glows with throughout her entire life. Or, if she ever loses that shine, I hope it will always come back to her, like a bear emerging from hibernation and coming out into the light. I hope that she always harbours, no matter how buried or deep, that sense that all is right with the world and her place in it. That she is entirely who she is meant to be. That she is talented and able and beautiful.

I hope her sense of awareness always has a little ‘a’ at the start. That she heads unwaveringly out into the world to do whatever she sets her mind to, that she does so from that foundation of normality and acceptance that she feels when she is at home or surrounded by her friends and family.

A child being born with a limb difference is not tragic. It’s extremely important to show our children how capable and wonderfully made they are. If we treat them as flawed or limited that is who they will believe themselves to be – and that would be the tragedy.

– Molly Stapleman, Luck Fin Project founder

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The way she is meant to be

We feel that she’s always been aware that she has, as she likes to put it, a Mummy Hand and a Baby Hand, on some subconscious level. We’ve witnessed many occasions during her babyhood where she would look at one hand and then the other, clearly wondering – however instinctively – why one hand could do what the other could not.

In short, she’s aware that she has a little hand and a big hand. She’s aware that she can hold one toy, while Mummy, Daddy or her little sister can hold two toys with their two big hands. What she doesn’t realise is that her normality isn’t actually the norm for the majority of people on the planet. She’s not aware why children sometimes exclaim or stare at her in the play park. She’s not aware that there are some people out there who might find disability “disturbing”, coming from their ignorant and narrow worlds.

As her awareness grows, so too does mine. She is more able and talented than I could ever have dreamed and she is blossoming into the most kind, adventurous and fearless young lady who makes me proud every single day. There might be some more emotional days, and there are certainly times when I have to be careful not to project my parental worries on to her blank canvass of confidence, but at the moment there is no sadness in her growing understanding.  There is only her potential and her sense that she has always been this way and that is the way she is meant to be.

 

 

 

Levelling up our limb-difference comfort zone

Levelling up our limb-difference comfort zone

Without even realising it, we’ve been quite happily ticking along in a comfortable little bubble where Hero’s limb difference is concerned. Actually, that’s not entirely true, I’ve written before about how I felt we were in the golden years of her childhood where her difference is concerned; about how she’s too young to even know she’s different. And yet it’s amazing how quickly you can start taking that comfort for granted and accept it as the norm.

Yet it’s often the moment that your happy boundaries are pushed and tested just a little that you become aware of your comfort zone at all. It’s the breaking, the growing and the adapting of those edges that make you appreciate their existence most.

I feel like we had a bit of a limb-difference level up a few weeks ago. If I’d written about the experience back then, all of a month ago, it would have been a very different post indeed. It would have been a lot more emotionally fraught, it would possibly have been a bit tearful. But times have already changed, and what once took me weeks, months or maybe even years to acclimatise to, now takes mere hours or days.

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The golden years

For the last year or so we’ve been blissfully unaffected by Hero’s difference. Aside from a few minor stares or comments we’ve had no negativity. She took to RugbyTots like a nerd takes to Comic Con. She might drop the ball a little more often than the others, but aside from that you would have absolutely no idea that she was at any kind of disadvantage, and it’s been that way since the very start. So there we were, Hero thriving at nursery, excelling at RugbyTots and just all-round smashing it at life.

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Then gymnastics happened.

I skipped along to toddler gymnastics way more excited than Hero, as always with these new enterprises of mine. I had added a note onto the paper work mentioning her hand, with the vague feeling that it might be useful for insurance purposes. I mentioned it briefly to the receptionist too, I always like to make new class leaders aware so we can avoid that awkward “oh!” moment when someone tries to help her with a task and realises. But when we arrived for our first session, it didn’t occur to me to say anything else.

We took our seats in the circle and took the two little wooden sticks we were offered as part of the warm up. To start off the toddlers had to tap the sticks together. No problem; Hero just clamped one of the sticks against her body with her little hand and tapped the other one against it. Check!

Then they had to roll one of the sticks along their outstretched legs. A little trickier, but still, after a bit of readjustment; no problem. No warning bells.

But then they were asked to stretch up high and tap the sticks together above their heads. The kids all leapt to their feet and duly obliged. Hero also leapt up, attentive as usual, and then just frowned a bit as she watched everyone around her doing a task that she just couldn’t adapt for this time. She brushed it off but next they were asked to tap the sticks together behind their backs and my heart dropped a peg or two. There was a little warning bell ringing in my head now.

Seeing her just stand there and watch her peers, wanting to join in and not really registering why she couldn’t was tough. I even had a moment of anger, one I’ve not had since the early days. “Really? Above their head? You get that she only has one hand right?!” I don’t expect the world to adapt to her difference, as rare as it is, but there are moments every now and again where I feel a little more inclusivity wouldn’t go a miss. After you noticed the kid that couldn’t tap them above her head, could you not have skipped the behind your back bit? But it was our first time and I suspect there was a little bit of sensitivity coming out in me, I’m not used to seeing her struggle after all.

 

Your hands don’t fit here

The warm up ended. I beamed and smiled and, as she returned the sticks back to the box, we brushed ourselves off as we skipped off to our activity. When we got there the first thing we were confronted with was two hand prints, set in contrast against the bench, showing the kids where to place their hands whilst practicing this particular move. Now I’m absolutely not complaining, but it did come a little hot on the heels of the Stick-gate Scandal and my heart lost another rung on the ladder.  Look Hero, your hands don’t fit here. I buried the feelings again, as I’m pretty expert at doing (and I know I’m not alone in that) we were really enjoying ourselves despite these little stings along the way.

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Next up was the parallel bars, at toddler height, where the kids were asked to hold onto each bar and lift their feet from the ground. I wasn’t sure how Hero was going to go about it, but I didn’t doubt that she would. As we approached, however, the helper waved a hand dismissively and told us that Hero could “just walk across instead”.

There wasn’t time to reply as we were swept along in the line but inside I felt a bit tumultuous. I was angry at her dismissal, I was frustrated at the immediate suggestion that an activity should just be avoided rather than tackled and of course, the edges of my comfort zone were wobbling dangerously in the breeze. This could have been one of those hypervigilance moments from me; she could have simply meant it because she knew it was Hero’s first session. Maybe. Perhaps. But either way, the result was the same and I have to confess to feeling a little disappointed that Hero didn’t even want to try that activity. I’d wanted so bad to prove that lady’s doubts null and void! Maybe next time!

 

Shaking the boundaries

It might not sound like it, but we actually had a wonderful time at gymnastics, despite the blips, and we’ve definitely been back since. We both had our comfort zones irrevocably shaken. Her’s physically, as she tried to master using her body in ways she’d never done before, and me emotionally as I watched her do just that. As I watched her come up against the very first thing in her life that she simply couldn’t do because of her hand. There was no working around it, no finding another way; she wasn’t about to tap those sticks above her head.

Having your comfort zone shaken, while painful at the time, is not really a bad thing. Instead your boundaries settle back into place, only this time they’re wider and you’re comfortable with just a little bit more than you were before. So when we went back the next week the handprints on the floor didn’t upset me. Mercifully, there weren’t any tapping sticks in the warm up either. Annoying really, as I had an EazyHold cuff in my pocket ready!

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When we started the warm up at the latest session she needed two hands again. Only this time they were using a rope. No problem, we simply folded the rope and hooked the loop over her little hand and held the other two ends in her left. She too could hold it high above her head this time, just like the others. Boom!

So here we are. Three sessions later and we’re pretty cool again. That didn’t take long, did it? I remember a time, when I was pregnant with Hero, when she was a little baby, when the mere sound of “if you’re happy and you know it clap your hands” would make my heart shrivel up for days on end. There was a time when I could feel sensitive about something someone said for weeks, maybe I’d even carry it around for months.

We found that first gym session tough. But we bounced back, we levelled up as a limb-difference family and we learnt that we could cope with a little more than we had before. We came marching back in and now we look for the next challenge. We puzzle out how we’ll overcome it before we get there. We watch how each activity should be done, and we have a rapid power think so that I can offer a strategy for Hero to try if, and only if, she needs it.

They had to hang onto the bar with both hands today and walk their feet up a wall. We gave our shoulders a shake, preparing for the fight, and in we dived. Hook an elbow over the bar and off we go.

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Three weeks ago we were knocked for six a little bit, for the first time in a long time. Three weeks ago is so last season! Three weeks ago we were sheltered in our wonderful world where Hero didn’t find anything particularly hard. Today we know that we can problem solve on the spot. We know that there are things out there that she will struggle with and some things that she simply won’t be able to do. But we also know that we – and she – will be ok. We know that we’ll work hard to brush those moments off and to throw ourselves into the next task without losing heart and without losing our confidence. We got this, she and I; roll on next term’s challenges.

 

 

 

 

Fit for purpose: An amateur’s step-by-step guide to making an adapted lucky fin glove

Fit for purpose: An amateur’s step-by-step guide to making an adapted lucky fin glove

I should start this guide with a little disclaimer: I am not a seamstress of any sort. I’m an enthusiastic amateur who loves a bit of crafting with a purpose.

I love seeing my daughter get stuck in with anything and everything. She loves helping out in the garden and has been struggling to help us carry cuttings and rough objects around the garden with a pair of gardening gloves on. It’s one of the few times we see her get frustrated as the right glove repeatedly falls off of her little hand. She eventually throws the gloves on the ground and declares sadly that she “can’t do it”. The thing is, she absolutely can do it! Give her the right tools and equipment and she can do whatever she sets her mind to.

I’ve always believed that she should have clothes that fit her arm, and not have to feel like she’s trying to fit into a mould that she simply wasn’t made in. When she was small I used to adapt all of her baby grows and she’s incredibly lucky to have jumpers, gloves and cardigans knitted bespoke for her by Grandma and Great Granny!

I couldn’t find a suitable ‘how to’ online and, let’s face it, needing to chop all the fingers off a glove and make it half the size is not something that most people will have need of doing in the course of their lives! So I decided to take some pictures as a went along, with the view that it might be helpful for someone else if it worked and that no one need ever know if it went horribly wrong! 🤫

Happily, it was a success! It only took around 20-30 minutes (which was a shame as I was enjoying myself) and I only needed very basic tools (and skills!).

 

1. Find your tools

All I needed was a pair of gloves, tape measure, scissors, a stitch-picker, pins, a needle and some thread. Simples!

Luckily for me, had my experiment in crafting gone wrong I wouldn’t have been out of pocket too much as I found these kids gloves in the bargain bin at my local hardware store for 75p. With hindsight I should have gotten a few pairs!

I’ve had no luck finding decent baby/toddler gardening gloves, so these ones are still pretty huge on her, but at least she’ll grow into them. In the meantime, glove companies are missing a trick not making gloves small enough for the littlest people! I don’t know many toddlers that don’t love hanging out and helping out in the garden!

 

2.  Remove the fingers from the glove

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3. Unpick the seams

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Turn the glove inside out.  Cut through the cuff, unpick the seams around the hand of the glove and lay it flat.

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4. Cut to the right shape and size

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This is where your approach and mine might differ somewhat! I am not a perfectionist. I am a ‘that-looks-about-rightist’! I did measure my daughter’s little hand to start with, but I have to admit I didn’t do a lot with that information other than use it as a guideline.

I cut about 3cm off the cuff and then cut the hand of the glove into a tapered shape, removing the thumb of the glove at the same time. With hindsight, I should have made the angle on either side a little more even at this stage as the finished article is a little wonky. But it works, and hey, they’re for nothing more glamorous than digging in the mud and mess after all!

 

5. Pin in place and sew

I used a basic running stitch to sew the restyled glove back up. I kept the hem narrow to avoid it rubbing on her little hand and then doubled back along the stitching to make sure it was extra secure, as it’s going to be put through some fairly heavy use.

 

6. Turn the right way out and voila!

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Somebody was incredibly happy to try on her new gloves and to discover that they actually fit! Now all we need is a bit of warmer weather so we can get outside and test them out!

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What does awareness matter anyway?

What does awareness matter anyway?

We use the hashtag #limbdifferenceawareness a lot. We share Hero’s successes and hurdles so openly in the hopes of giving a little reassurance and solidarity to others like us and also to raise awareness for those less like us.

But why? Even I have asked myself why raising awareness – of any difference or minority – is so important.

Symbrachydactyly, the condition that caused Hero to be born with only one hand, occurs in around 1 birth out of 32,000.

If limb differences are so rare, why on earth do the other 31,999 two-handed and ten-fingered babies need to know about it? It’s entirely possible that they will go through life without ever coming across someone with a congenital limb difference after all.

“Oh my god! That kid’s only got one hand!”

Today in the soft play Hero was passed by two young girls, around about seven and nine years old.

Oh my god!” The youngest shouted, causing the other kids near by to look round. “That kid’s only got one hand!”

I tensed. My hackles go up in these situations and I start frantically trying to remember all the brilliant one-liners I had inevitably come up with long after these kind of situations have been and gone. I wasn’t at all angry, it was sheer curiosity. Sure, the girl could have been a bit politer about it, but she’s only seven after all and clearly Hero’s hand – or lack thereof – was a big “wow” moment for her. Despite not being mad, I’m always wary and I do find these occasions difficult, more so because Hero is very shy around her peers and doesn’t like to ever be the centre of their attention. She’s not old enough to understand their curiosity yet, but I really don’t look forward to the day when she is.

The older girl stopped and turned to look at Hero, who was hovering warily by the entrance to the tunnel.

She’s only got five fingers!” The youngest girl continued, pointing.

Oh yeah,” the oldest said, with a supreme lack of surprise or any real interest. “One of my friends only has three fingers on her hand.”

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Heart to heart and hand to hand

And there it was; over. She passed by on her merry way and the youngest girl followed, asking about the three-fingered friend without so much as a backward glance at the kid who’d caused her to stop short a mere moment ago.

The older girl’s cool and calm response, her awareness that not everyone comes from the exact same mould, led to a complete lack of shock or fear and diffused the younger girl’s reaction immediately. It allowed Hero to carry on with her day unbothered by their stares or questions.

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That girl’s comfort in the face of an unusual difference, her complete lack of fear, is why limb difference awareness, and awareness of any differences, is essential. That there is why all babies need to grow up knowing, not just about limb differences, but about anything that might single someone out.

They don’t need to know how. They don’t need to know why – heck, most of us don’t even know why! But they do need to know that it exists. And that it’s totally, completely ok.

The Limb Difference Battle Cry

The Limb Difference Battle Cry

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

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

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

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

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

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

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

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

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

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

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

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No hand? No worries!

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

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

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When you’ve got powerful friends behind you…

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

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We’re looking at you, haters!

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

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

 

Toys: harbingers of a new phase

Toys: harbingers of a new phase

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

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


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Juggling the baby

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

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

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

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D’oh!

 

One-sided conversations

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

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

 

Horse riding hurdles

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

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

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

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

 

Exciting times ahead

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

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