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.”
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
There is no better example of the emotional journey we’ve been on over the last two years, since our daughter was born without her right hand, than looking at our progress through our baby signing classes.
I started attending Sing and Sign classes with Hero when she was around 8 months old. It’s a superb baby and toddler class, which develops the use of hand signs and gestures as a means to supporting the development of a child’s speech and vocabulary. Hero is a bit of a late talker and so we’ve found the signs an invaluable and fun means of communicating with her and her with us.
Sitting in the spotlight
And yet, when we first started I really struggled with the classes. As you can imagine, the class is all about hands and how we use them. The opening song at every class called for the children to hold up their hands and wiggle their fingers. Back then, when Hero was younger and my feelings were all a little more raw, I used to get a twinge of heartache every single time.
Back then I felt like the song lyrics shone a little spot light on Hero and I, I felt like it drew attention to her difference and I’d find myself looking down at the floor and trying to ignore those feelings of being in a goldfish bowl. All feelings I strongly suspect many parents of a child with a difference can understand and empathise with. Also feelings that, I’m sure, weren’t entirely true (see my post about feeling hypervigilant). I don’t really think anyone was looking at us, maybe they were at first, maybe they weren’t. But the reality doesn’t shake that sense of insecurity you might feel inside from time to time as you come to terms with a child’s difference.
However, as time wore on and we kept going to classes I started to adjust. Many of my blog posts have highlighted our journey from worried and hyper-sensitive to accepting and confident; it doesn’t occur to me now that Hero is anything other than one of the Sing and Sign crew. I don’t even notice the words and the lyrics anymore, the ones that at first felt so painfully obvious.
Two-handed signs for a two-handed world
Another little hurdle I felt that we faced was in making and expressing the signs accurately when Hero was missing half the tools to do so. Like many things in life British Sign Language, and other signing variants, are designed for a two-handed world.
At first adapting the hand signs, while simple, still sent these feelings of sensitivity bubbling up in me. Sure, we can adapt the signs, but it felt a bit rotten that we had to. Those feelings say a lot more about my own emotional journey as a parent of a child with a limb difference than they do about any real challenges we may have faced using the signs in class!
When I finally plucked up the courage to speak to our class leader, Beccy, about how I felt using and adapting the signs she was nothing but reassuring that any changes we made would not remotely be a problem.
“At Sing and Sign, we don’t teach sign language as such, we teach communication. Communicating through sign with your pre-verbal little one is an amazing window into their worlds. It doesn’t actually matter what signs or gestures you use and this makes signing possible for everyone!” – Beccy, Sing and Sign Chepstow Newport Lydney Monmouth
Unconscious little changes
Up until our second term the signs had been pretty easy to adapt and Hero started doing it naturally and unconsciously – not realising she had any difference at all of course. However, when we started learning the British Sign Language alphabet I began to foresee some possible issues. A number of the letter signs require the use of fingers from both hands, something that’s simply impossible when you have only five.
Exactly as I’d done after being told of her difference at our twenty-week scan, I took to the Internet and researched how to use BSL with one hand. I couldn’t find a lot to help me guide Hero. While limb difference is the norm for us, it turns out that it’s not so common that there is an official one-handed signing system! However, I was eventually directed to a young lady’s Instagram account and YouTube videos. Just like Hero, Elizabeth had been born without one of her hands and despite this has taken up and excelled at British Sign Language.
She had been kind enough to share videos of her one-hand-adapted signing online. She bravely put herself out there and was keen to test how well she was being understood. She’s been reassured by her viewers and followers that, despite using her limbs slightly differently to make the signs, she was easily and completely understood. I loved trawling through Elizabeth’s videos and I started to use some of her adaptations with Hero in class.
“I’m always reassuring parents that they don’t need to know the official sign for something. Make it up! That’s part of the fun! Babies and toddlers quite often adapt the signs that you show them anyway and may even progress to making up their own. If signs need to be changed slightly to accommodate differences, then that’s no problem. Consistency is the key!”- Beccy, Sing and Sign Chepstow Newport Lydney Monmouth
Offering reassurance and finding some of my own
When I set out to write this post I was hoping to reassure other parents who might be nervous about attending baby groups or similar style classes with their limb-different little one, having received numerous messages expressing that fear. Yet, as I began writing, I realised that as well as (hopefully) reassuring others, an exploration of our baby signing journey has shown me just how much change there has been in my own mindset, from the worrisome early days when Hero was just months old to now as I wrangle our energetic, tenacious and entirely unstoppable two year old!
From our very first term when I felt self-conscious and acutely different in our two-handed world, Hero now totally rocks these differentiated signs. They were designed for communication and have given Hero and I a fantastic means to understand one another. We’ve been able to have entire conversations using only our hands before she’d even developed the vocabulary to express the same things out loud.
I’ve gone from self-consciousness and a little fearful to confident and certain and, as I’ve said time and time again, it’s been Hero who’s enabled that change in me. It didn’t matter how many times someone told me she would be just fine, I could never quite let the worries go until she started showing me for herself. She didn’t wonder if she should do the signs or not, she didn’t question whether they were different to the other kids’ signs or whether they even made sense. She just went ahead and did it – exactly as she approaches everything in life.
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”.
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
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?
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.
I’m not too sure how it happened or where the time has gone. I’m not sure how a pregnancy that felt utterly endless has left me now with a bouncing and all too energetic toddler. I’m not sure how, despite how much I’ve savoured and clung on to every moment, time has still passed.
And now you are two!
I can’t help but think back to when you were born. It had been a scary pregnancy, wondering if you’d be ok. Then a very bumpy arrival meant you were whisked off to intensive care before I’d had a chance to touch you. The first time I properly saw your face it was surrounded by tubes and wires. But your cheeks were restored to a rosy glow, your eyes were bright and your little hand was utterly gorgeous.
I can’t help but marvel at how far you have come and, moreover, how drastically my thoughts and feelings have changed in that time.
Back then I was worried. I was worried about everything. I was worried about how people would react, I was worried about how you would cope. Every little task I foresaw felt like a mountain that must be climbed. I fretted about how you would hold a toy. I fretted about what cups you’d be able to use. I fretted about how you’d be able to feed yourself with ease.
What a waste of my time!
Then and now
Now I find I don’t often give a second thought to how you’ll get things done. You just will and, to be honest, it’s none of my business how you want to go about it. It’s not my place to step in with my two-handed mind and show you ways I would do it. Because I am not you and most likely, you can do it better. (That doesn’t mean I don’t reserve the right to buy crazy gadgets off the internet to help in your exploration – those random Amazon plate dividers have saved having to sweep up countless peas from the floor!)
I remember worrying about how people would react to you. When you were tiny I was anxious for people to know about your hand before they met you. I just couldn’t bear the thought of seeing expressions of surprise, pity or perhaps worse on their faces.
Now your hand isn’t a thing anymore.
Yes, sometimes people look at you. They even stare sometimes. But what I’ve learned in the last two years is that they’re actually staring at your smile. At your personality. At your vitality and zest for life. If they even notice your hand it’s usually with wonder at the fact they never noticed before. Some still stare at your hand and I do my best to ease their minds, but some people simply won’t be helped and, provided they’re not being too rude, that’s their problem and not ours.
Way back in 2016 I wrote:
“It’s that moment when you watch a friend’s small child grappling their two perfect hands around a toy and you realise that your daughter, however normal, however confident, just won’t be able to do it that way.” – Trying to find a little peace of mind, 2016
No, she won’t do it that way. And, you know what, I don’t mind that much any more. I watch her grappling in her own way and I am filled with such a fierce pride I don’t think I could even begin to express it. It’s a feeling I try not to convey too openly as I can’t help but feel the pride is tinged with a little bit of a brag; it’s a sense of “look what my kid can do and with ONLY one hand!” Then I have to try and resist doing a socially-unacceptable air punch of celebration.
I remember when this thought hit me during pregnancy. It was a bit emotionally crushing at the time, complicated as it was by a fear of the unknown and a good dose of anxiety and depression. You could have told me then that I was being ridiculous but I’d have internally shouted you down, all the while I nodded and agreed to your face. But now, the idea – while painfully real at the time – seems utterly ludicrous to me.
When I reach out to take her little hand (she prefers you to hold her left – but that’s been a bit tricky since I broke my right!) I can feel her little paw – that tiny pad of muscle just past the wrist – bend and curl into mine. Holding her little hand and having her hold mine, feeling the gentle press of her tiny digits against my palm, is without a shadow of the doubt the most beautiful feeling in the world.
The golden years
There’s also no doubt in my mind that these years will be golden ones. She’s young enough to not be aware of her difference in a social sense yet old enough to explore and adventure with the best of them. She reacts with surprise and a little confusion if kids grab at her hand and marvel at it (my reaction tends to be a little more visceral). She’s yet to understand why they’re curious or to question why she doesn’t have two hands as well.
Yet I’m certain her brain knows that she’s adapting. Even now, at two years old she’ll try to reach out with her little hand if you offer her a second toy or snack to hold. Even now she’ll reach for it and touch the object with her lucky fin and there will be a moment of processing and realisation that this set up simply isn’t going to work. Then she swiftly switches hands, she clamps the first object against her chest with her lucky fin and she’ll reach out to take the second with her left hand.
These are the years where we can marvel in her achievements and bask in her sense of unshakable normality. I know a time will come when she’ll start to notice the difference. The time will come when a kid will ask one question too many and perhaps that sense of insecurity and doubt will start to creep in. I dread the day when I have to see that bright, worry-free face crumple a little bit. I dread the frown of confusion and injustice.
And yet now I feel stronger, I feel better equipped and armed for when that time comes. When we first found out about her hand the fears felt insurmountable. And now they’re simply a bridge to be crossed and we’ll follow her example to get across them.
Despite the future worries about confidence and fitting in, I no longer worry about her ability. Not at all. I don’t waste a second of my time wondering how she’ll get something done. When I was pregnant, when I was in a darker space and I found it difficult to accept positivity about a scary situation, I hated hearing it. The positivity made me feel my feelings were somehow invalid and unjustified.
But as two years have passed by, I’m now one of the ones shouting the loudest: these kids can do anything! These kids aren’t going to be held back by their differences. These kids might have to work a bit harder at some challenges, they might have to puzzle it out, and they might have to face a bit more prejudice than others. But their ability is never, ever to be doubted. Not by the public, not by their friends and certainly not by their parents.
It’s surprised me to look back and see that nothing anybody ever said would or could have made me feel better at the time. Nothing anybody could have told me would have taken away those fears and reassured me, no matter how experienced or expert they were. The only thing in the world that’s been able to do that is Hero. She’s shown me, moment after moment and day after day that she is more than just fine. She’s proved to me that I don’t need to worry about her or what she’ll do. She’s demonstrated repeatedly that there is another way and that she’ll find it.
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.
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.
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!