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.

 

 

 

 

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.

 

Identifying the difference: a new era

Identifying the difference: a new era

Something happened this weekend that, while seemingly insignificant, to me feels like a huge leap in to thus-far unchartered territory. It feels like a loss of innocence and naivety, which I was hoping to cling to for a little longer.

Hero turned around to me, entirely out of the blue, and pointed to her little hand saying, “baby”. She then tapped her left hand and said, “mummy”.

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Introducing Baby Hand and Mummy Hand

Now, in her world at the moment every single thing fits into the Mummy, Daddy or Baby categories. If it’s small, it’s a baby one, if it’s big its either Mummy or Daddy. This categorisation will apply to everything and anything from leaves, to stones, to sticks, to animals, cars and people. It can be a little embarrassing as she shouts “Daddy!” at almost every random male we pass. “Yes, Hero, that might well be a daddy. It’s not your daddy though!”

A growing awareness

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The 40th Reach AGM and Family Weekend

It’s no coincidence that Hero’s announcement about her hands came when it did, as we spent the weekend with Reach families from across the country celebrating the charity’s 40th AGM and Family Weekend. While the adults laughed and cried our way through the conference, packed full of inspirational and fascinating people including speakers from the fields of specialist hand surgery, neuroplasticity research and TV comedy, Hero was in the Reach crèche run by the ever-awesome team at Freedom Childcare.

I wrote last year about what an odd experience it is dropping Hero off at the Reach crèche. At any other childcare facility or toddler group, experience has told me that she will stand out from the crowd and that, whatever she’s doing, she’ll be noticed (the loss of anonymity that having a physical difference brings was brought up in one of the conference talks, to many understanding nods from the delegates.). But at the Reach family weekend things are different, she joins a whole cohort of limb-different kids and, for a rare day, she’s not going to stand out. She’s one of them and she fits right in.

An unsurprising surprise

While the adults are all learning how our children’s brains might be compensating for their missing limbs and are weeping our way through tales of victories and success from across the limb-different community, it probably shouldn’t come as a surprise that the children are discussing their differences too.

Yet despite this, despite spending the weekend surrounded by limb differences, her pronouncement still came as a shock to me and, I won’t lie, a bit of a heart aching blow. Since her birth, Hero has shown us that her brain knows there’s a difference in her hands – despite what well-wishers might tell us. We’ve watched her try to use her right hand as if it were a fully functioning, five-fingered limb. But what she’s not been aware of is her own difference compared to those around her.

She has never looked at her hands and compared them to her peers, or even to ours as parents. She’s been blissfully, naively unaware that there is anything about her that is different from anyone else.  I’ve said in the past that I think, in some ways, these years have been golden ones. These are the years where her confidence can’t be damaged by her difference, these have been the years when she doesn’t notice if someone is staring or asking questions. These are the years where, to her eyes, she unconditionally fits in.

Her identification of her hands as a ‘baby’ and a ‘mummy’ hand feels like the beginning of the end of those golden years, like the start of something new. It feels a little like her innocence at the world and its judgements are starting to erode away and she will be left more exposed and vulnerable to people’s judgements and opinions.

Please don’t get me wrong, I don’t believe that the end of these golden years of innocence means that her life will inevitably be difficult and a hard from now on – far from it. It’s simply that, over the past years my concerns for Hero have changed from things I thought she wouldn’t be able to do (what a joke!) to how she will cope socially with her difference. What will it be like when she starts school? How will her nursery help her to deal with questions or attention from other kids? What will happen to her self-esteem when she first acknowledges a rude stare or unkind comment?

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Rugby? No problem!

Their hard-earned confidence

The adult Reach members who speak at our family weekends are inspirational, truly. They are athletes, professionals, actors, comedians… they are successful, they are confident in their own bodies. But many of them tell the same story; they tell of the troughs they fell into, they tell of the hurdles they had to overcome in order to be – and to love – who they are today. They tell of the insecurity, and of the fear they battled through to win their hard-earned confidence.

Suddenly, her identification of her difference, while representing an exciting leap in her understanding and awareness, also feels like an opening of a door or a shedding of her armour that will leave her more exposed to knocks in her currently unshakable confidence.

As parents we would do anything and everything to ensure our child felt safe, confident and loved. Yet a physical difference is something that we simply can’t do anything about. If she’s struggling in school I can get her extra help, if she’s struggling with friendships I can support her in building bridges. But I can’t give her a hand. I can’t take away the one difference that she might want to be rid of in the future. I can’t answer the inevitable question of, “when will my little hand grow?” with anything other than a crushing finality. I can answer sensitively, supportively and compassionately even, but not untruthfully.

So for now, as we embark upon the terrible twos and navigate emotions she never even knew existed before, both she and her parents are entering a new era. It’s a era of public tantrums, of our small person learning to express herself. But it’s also an era of new discoveries. An era of learning to understand her physical difference, of noticing when others notice. We’re entering an era when how we react and how we respond will be crucial in helping her to maintain her self confidence and self belief in a world that’s suddenly starting to look very different not only to her, but to us too.

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Breaking out the moves on the dance floor at the 40th Anniversary Reach family ball 🕺

Expecting The Unexpected: Pregnancy after a limb difference

Expecting The Unexpected: Pregnancy after a limb difference

I always hoped my second pregnancy would be radically different to the first. The first started out in blissful ignorance and with us referring to the 20-week anomaly scan as the “gender scan” – ho ho ho! However, we were rapidly disabused of that ignorance, as the sonographer hung up her scanning device and told us there was a problem. The problem they were sure of was that our first baby was missing her right hand. The problems they weren’t sure of were endless. She’d been unable to scan baby’s head or heart and was seriously concerned that there was something significantly life threatening or life limiting wrong with her.

We were ushered into a family counselling room, where I finally went to pieces. From there we were whisked up to the Fetal Medicine Unit (FMU) where they explained all the myriad of terrible things that could be wrong with Hero. They emphasised the abortion cut off limit of 24 weeks. We had precisely 4 weeks to find out what was wrong and to decide whether we should keep her or not (although there was never any doubt to our mind what we would do).

Four days later we were in a specialist hospital for more scans. I don’t think I’ve ever had four days last longer than those. To not know whether to hope or to mourn, to desperately seek hope and reassurance and yet to fear the very same was exhausting. The uncertainty lasted four weeks in all before we were told they were “fairly sure” that baby would be OK, aside from a missing hand. We never got anything more certain than a ‘fairly sure’ – which was our fault. We’d rejected any invasive tests not wanting to put any more risk on our one in 32,000 babe.

Anyone who’s followed our blog knows how everything turned out. It couldn’t be brighter, it couldn’t be better and we couldn’t be happier with our little girl! Fears for her health out the window, fears for her ability melted away: We’re incredibly lucky and are thankful for it every day.

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Yet an experience like that does leave a mark and there’s nothing quite like a second pregnancy to trigger it off. Only my feelings going into things second time around haven’t always been exactly what I expected. Going along to pregnancy scans were a very different kettle of fish this time around. We approached them with a sense of apprehension we didn’t really have last time.

We weren’t helped at all by having a scare at 9 weeks and another one, far worse, at 14-weeks. We were told to rush to the hospital and were accidentally sent up the Fetal Medicine Unit. The moment I walked through the door I broke down. I know the FMU isn’t meant to be hell on earth, but for me it was a place of huge fear, upset and (mercifully temporary) heartbreak. I couldn’t believe I was back there again and under yet more horrible circumstances. Luckily for us we’d been misdirected, were sent elsewhere for the urgent checks and were free to breath another day after investigations proved baby was looking fine despite everything.

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Baby #2

But aside from all that, and the small incident of my badly broken arm, everything else so far has surprised me, pleasantly for the most part. I’ve been surprised by my reactions, I’ve been surprised by my expectations and my responses and I’ve been surprised how good I can feel now after what’s been a pretty stressful twenty weeks!

 

Surprise: Baby’s got two hands!

At our 12-week scan for Baby #2 the sonographer had read our notes, took my intense anxiety into account and kindly spent a lot of time thoroughly checking all of Baby #2’s limbs. Everything looked good. We even saw both the hands on the screen at which point the sonographer turned to us and beamed. Isn’t that wonderful?!

I wasn’t immediately sure why, but I walked out incredibly relieved that everything looked well but my over riding feeling about having seen both hands wasn’t actually relief – it was almost disappointment.

Why on earth would I be disappointed that my baby looked ‘perfect’? I didn’t voice my feelings right away; I didn’t want to sound ungrateful, crazy or churlish. But as I thought about things more, I realised that Hero is absolutely perfect. I wouldn’t change her for the world and every day I celebrate her difference, her personality, her skills and her talents.

Why on earth would I be relieved that Baby #2 had both hands, when my first child was getting on so spectacularly with just the one? Why would I be relieved when I was so fiercely proud? I know there will be harder times ahead for Hero, there will be insecurities, frustrations and upsets and I would never wish upon her, or anyone. But to me she’s utterly perfect and I’m doing everything in my power to bring her up to see that. It would be hypocritical of me to celebrate Baby #2 having both hands, while at the same time believing that Hero is perfect as she is.

Another little bit of the disappointment came from realising that, as much as I celebrate Hero, I don’t really want her to be the only one. We attend Reach family days throughout the year, I show her videos of awesome limb different celebrities, all in an effort to make sure she never has to feel isolated or alone. There’s no doubt that without Reach or the Internet, she’d be the only one in our circle; she would be alone with her difference. I think a little part of me actually wanted Baby #2 to miss a hand as well so that in being different they could both in some way be the same. A part of me was disappointed, not for me, not for the baby, but for Hero.

I know it doesn’t matter – I suspect Hero won’t even care or notice! And I know that I will love both my children with the same fervour, pride and intensity – for all of their differences and for all of their similarities and I can only hope they’ll feel the same about one another.

 

Anxiety: The dreaded anomaly scan

Despite knowing that Baby #2 had two hands, the awful, dreaded 20-week anomaly scan was staring at from me across the weeks. It kept waving at me and reminding me that we weren’t out of the woods yet. The successful 12-week scan (and the follow up reassurance scan after our 14-week scare) could never have fully reassured us because everything had looked awesome at Hero’s 12-week scan too. But if limbs were all good, and Hero was all healthy, what else could there be to fear?

It took a while to realise that I was just frightened of being afraid again. I was no longer under the illusion that the 20-week scan was meant to be a beautiful experience. I knew now that I could be utterly blindsided by something I’d never even imagined, let alone foreseen. I knew that we could be thrown into a whirlwind of medical appointments, tests and consultations and still not get any nearer to an answer. I knew we could be told we might have to make the heart breaking decision to end our child’s life before it had even begun.

I was terrified of the unknown happening again. It never had anything to do with hands or limbs. Ever since we’ve had Hero I get anxious about other people’s 20-week scans too; I have to hear if it all went well. I’m nervous for them, even if they’re feeling nothing but excitement and joy themselves, because I know now what the possibilities are.

The night before our second 20-week scan I barely slept. The weeks and days before I just wanted time to pass. I wanted to be there, I wanted to have it done and have it over with. Then, eventually, I was lying on the couch (the same one where we’d had Hero’s 20-week scan) and the cold jelly was on my stomach. I’d never cried during any other scan but I could hardly breath during this one and my eyes were watering from the moment we’d stepped into the waiting room.

The sonographer was wonderful. She’d seen our notes and she happily talked us through everything – again, taking extra time to check on those hands! We were silent this time, no excited gibbering. We wanted her to have total space to concentrate on what needed to be done. Every time she checked something off her list I felt I could breath a tiny bit more.

There was an awful moment – it felt like hours – where she frowned and concentrated on the heart for far longer than ideal. We could tell she was worried. We moved positions (not easy with an arm in plaster up to the elbow!) and rolled around trying to find a better shot of Baby. I just burst into tears, convinced it was happening all over again. Here we go! Until at last, after what felt like an age, she let out a massive sigh of relief and told us all looked well.

She showed us Baby #2 dancing about on the screen, clearly incredibly relieved not to have had to be the bearer of bad news, gave us a slip saying all was well and sent us merrily on our way.

 

Surreal: No more appointments!

We stopped outside the scan room looking at our photo. I cried again. I knew I’d been stressed, but I hadn’t realised how much until the axe had been removed from above our heads. We looked around a bit and had a moment of ‘what on earth do we do now?’ Were we meant to just… go home?

Last time we’d been in this position we’d been whisked away to another department within moments of leaving the room. We’d started getting appointment letter after appointment letter through the post and we were poked and prodded and scanned to within an inch of our lives. The rest of the pregnancy went by in a whirlwind, with time passing in little dollops of waiting between each new appointment.

At home, this time around, I turned to Google and it looks like I don’t ‘have’ to see anyone at all for another two months.  It was mind blowing. We were just to be left to our own devices! No scans. No check ups. No specialists. All was well.

We do have one consultant appointment lined up for the interim; following on from the last pregnancy and Hero’s dramatic arrival I totally understand why they want to see us. But I don’t think we’ll be returning to the olden days of our first pregnancy. I think/hope the consultant will see us, confirm everything is ok and send us on our way.

It took a few days of getting used to the idea that this was it and that all was well. It took a while for all the intense stress of the past twenty weeks to work its way out of my system. But here we are. And we are so darn excited it’s unbelievable. I never had a moment last time to just enjoy being pregnant. I never truly relaxed until Hero was in my arms and perhaps not even then right away – thanks to on-going very low weight gain, she was well over a year old before I really felt confident.

But I’m here now, getting steadily fatter, being kicked enthusiastically from within, experiencing the pregnancy I’d assumed we’d have last time and feeling incredibly grateful and blessed for every moment. Without all the hospital visits and appointments of last time we have months ahead of us now to enjoy every moment of ‘Hero and Us’ time before this wonderful new interloper arrives!

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Before 3 become 4!

The joy of being told how it is: “She doesn’t know any different!”

The joy of being told how it is: “She doesn’t know any different!”

Emotions come in phases, they ebb and flow. Right now my emotional phase, in regard to Hero’s limb difference, is undoubtedly ‘over-sensitive’. As someone who will traditionally avoid conflict at all costs, even if seriously offended, I’ve actually found myself snapping once or twice recently.

My biggest bug bear at the moment? Phrases along the lines of: “But she doesn’t know any different!” or “But she doesn’t know she’s missing anything!”

The latest occasion came as I was telling someone, in response to a query as to how she was getting on “with her hand“, about how Hero had just scaled a 6ft ladder that was far too big for her. Luckily for me I didn’t witness the assent, I’m not sure I could have resisted running over to hover if I had! But I saw the end result. I saw her pride. I was amazed that she’d managed to get up that ladder at her age. The fact that she only had one hand was a secondary consideration.

In response to this, the person I was talking to interrupted me to explain that, for Hero, it wasn’t actually a huge achievement. “She doesn’t know any different!” they added.  Luckily, I do so love being told by people with no experience of limb difference exactly how things are with my child. As, I’m sure, every parent does.

Essentially, the statements are true, right? Hero wasn’t born with a hand and then went on to lose it.  She has no physical memory of having two hands.  Consciously, she doesn’t appear to know there’s anything different. And she sure wasn’t half as impressed with her assent as I was. I don’t think that, consciously, she even knows that she’s adapting – which I’m sure is what people are trying to say when they assert that, “she doesn’t know”.  But let me assure you that, subconsciously, she knows all too well.

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Mummy is meant to be holding my hand… not taking photos!

We’ve been struggling with this particular platitude of late following more than a few incidents where Hero has demonstrated that she’s actually incredibly aware that there is something different about her right hand.

We’ve watched her reach out to take something with her little hand, only to find that she can’t. These moments are always followed by a hesitation and a curious look at her hand to find out why it isn’t working the way her brain was expecting it to. We’ve often seen her try to manipulate an object as if she has fingers there, only to pause in puzzlement again.

She never had fingers. Yet clearly her brain, in its most primal form, thinks there should be two hands there. How else would awesome bionics such as the Hero Arm from Open Bionics work? How can you use nerve endings and muscles to control an arm that was never ever there? Unless the brain was hard wired to control something on the end of that arm, unless the brain still thinks there’s something there to be controlled.

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‘Now where did I leave the dog?’

When you watch your child adapting in real time and problem solving obstacles she isn’t even aware of, almost every day, it’s a tad galling to be told by someone that she isn’t actually achieving any of the things you think she is. Her brain somehow just knew there wasn’t something there and it has managed to reprogram itself accordingly. That she doesn’t need to adapt because she’s never known any different. When she’s older, I don’t doubt that she won’t remember ever having had to make these changes or work through these problems. I’ve no doubt that she’ll say herself that she’s never known any different.

I’m also not for a second trying to imply that she’s finding life hard. She’s absolutely thriving! You wouldn’t know most of the time that she even had a difference. There are hurdles, of course, but she crosses those hurdles so fast you’d barely notice the change. But she is crossing hurdles and I’m a bit sensitive about someone with no direct knowledge telling me categorically that she isn’t.

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‘Too tall for me? I don’t think so!’

For us, as her parents, through watching these early developments we’ve seen each stage of her trial and error. We’re witnessing her brain rewriting the programme to suit the tools that it has, rather than the ones it thinks it should. It’s a fascinating process. It’s wonderful and humbling to see. But being told by some random stranger that, actually, nothing you’ve witnessed in your child’s development is true is a tad… irritating.

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Please don’t say you’re sorry for my daughter’s difference

Please don’t say you’re sorry for my daughter’s difference

 

In honour of Limb Difference Awareness Month I wanted to address something somebody said to me last week, with the best of intentions. I wanted to address why parents like me don’t like to hear it.

“I’m so sorry.”

When the stranger noticed Hero’s limb difference, he put a sympathetic hand on my arm and told me that he was sorry.  

I just blinked. You’re…. what?

As always with me, it takes me a while to process emotions and to understand how I’m feeling. I’m simply awesome at coming up with witty comebacks hours after the event. But, as usual, I was struck dumb at the time.

I’ve had time to think about it now. I’ve had a little more time to work out why I’d rather that stranger had been more sorry for what he said than for my daughter’s difference!

 

Please don’t be sorry, be amazed instead.

Hang around for a minute and you’ll see what this kid can do. If you saw her the way I do, you wouldn’t think she was disabled at all. She can upend a completely full box of toys in a fraction of a second. She can stack a tower taller than her.  She can climb three flights of stairs in the blink of an eye. She can crawl. She can clap. She can sign. She can paint. And, of course, she’s got a beastly right hook!  

So, please don’t be sorry. Be amazed instead.

Please don’t be sorry, be curious instead.

I don’t need condolences, and neither does she. What we’d love is simply awareness from people around us. We’d love it if people weren’t shocked. If people didn’t feel uncomfortable, if the elephant wasn’t always in the room. Why not ask us questions? (To be fair, we might not even know the answers ourselves as so many physical differences are consigned to the “just one of those things” box.) But do find out a bit more about us; you might find something you like!

So, please don’t be sorry. Be curious instead.

 

Please don’t be sorry, be understanding instead.

We don’t need your apologies or your expressions of sorrow. That doesn’t mean that it’s not hard for us sometimes, hard for her parents and hard for her. We can go days, weeks and months without giving her difference a second thought, but then we might crash headlong into an unexpected challenge. She’ll find something she can’t do, when all her friends can. Someone will say something that might break my heart a little. But despite every hurdle, we wouldn’t change her for the world and I can only hope and pray that when she’s older, she doesn’t want to change either.

So, please don’t be sorry. Be understanding instead.

 

Please don’t be sorry, be casual instead.

It’s jarring when someone says they’re sorry; it tells us that they think there’s something less than perfect about our kids, something to be commiserated. Sure, our kids are different. They have mountains to climb that others don’t. But to us they’re utterly perfect. We’re putting more effort, time and energy into building their confidence and self esteem than you could ever see. Yet, one comment is all it takes to unpick those seams and unravel it all. At a pottery painting shop the leader bent over my daughter suggesting that she do some hand painting instead. The lady reached out for her missing hand with the paintbrush. There was a micro nanosecond of hesitation, but then she carried on regardless. She painted my daughter’s little hand and pressed it to the page. I stopped to thank her afterwards and she couldn’t understand why I was so grateful. “There’s nothing wrong with her!” she said. There’s nothing to be sorry for.

So, please don’t be sorry. Be casual instead.

 

Please don’t be sorry, be envious instead.

I say this tongue in cheek, of course, as we’re all about spreading the love! But seriously, there are some occasions when we’re to be envied. We’ve been given a ready-made family that stretches right around the world. We’ve made the most wonderful friends. We’ve got the most spectacular role models for our kids – medal winners, surgeons, fire fighters, athletes and writers, to name but a few. We live in an age where being different is something to be celebrated, not shamed. We live in an age where the most astounding developments in prosthetic technology are being made, right before our eyes. We live in a world where we can be closer than ever to one another. No longer do we need to feel isolated. My daughter will never have to feel that she’s the only one, but likewise she’ll always know that she’s one in a million.

So, please don’t be sorry, be a little envious instead.

 

Please don’t be sorry, be complimentary instead.

It’s ok to be a little worried for us, it’s ok to wonder how on earth you’d cope if it were you, but please don’t say this aloud. Say hello instead! Say how awesomely our little one is getting along, tell us how impressive it is that they can pull down the entire contents of a store shelf with one hand. Tell us how cute they are; I doubt there’s a parent in the world that doesn’t love to hear that. But to a parent of a child with a physical difference, it means that little bit more, it might just make their day.

So, please don’t be sorry, be complimentary instead.