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.

 

Please don’t feel ashamed of my daughter’s difference

Please don’t feel ashamed of my daughter’s difference

Christmas time is synonymous with crafting when you have a young child or a toddler. Making paper chains, baking festive cookies or making the obligatory hand and foot print Christmas cards for the family.

I had a lot of fun this year working out how to incorporate both Hero’s left hand and her lucky fin in her handprint Christmas cards. Looking at the shape of her gorgeous little nubbins (I still don’t like that word, but neither have I found a better alternative!) I decided that her little handprint would make an excellent crown. Embellished with my appallingly childish artwork (I can’t wait for her to be old enough to draw for herself) we put three lucky fin prints, side by side, and lo! The Three Kings were crowned. Her left hand then took the place of the star. It looked really quite cute, until I tried to add the rest of the detail, that is!

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I haven’t done art since year 9….

We also attended a festive craft session for the under fives in the weeks before Christmas. Of course, no Christmas craft session would be complete without turning your handprints into Reindeer antlers! When I came to collect her I couldn’t help but notice that everybody else’s reindeer had a left and a right hand print atop their heads. Hero’s had two lefts. That made perfect sense to me. I’d obviously have preferred a lucky fin reindeer, but I felt that the minor ruffling of my feathers probably had more to do with my own sensitivity than with the choice they’d made to only use one of her hands.

However, as I was chatting with the leader afterwards, I admired the artwork they’d done with the toddlers and he said to me:

“We decided to do Hero’s with just her left hand as we weren’t sure if you’d want her other one printed.”

He said it with genuine concern. I smiled and laughed, as is my go-to reaction in these situations and I reassured him that we loved both her handprints. I told him all about our own Christmas card adventures. Despite leaving the group a happy bunny,  the comment turned out to be one of those insidious thoughts that return to you again and again long after the conversation has ended. I’m always a bit of delayed processor of emotions, but by the time I’d gotten home I was feeling the hurt. I was just crushed by the idea that her little hand could somehow be something shameful and that her own parents might not want to see artwork with it on.

Now please be assured, I know with all my heart that that certainly wasn’t the intent of the leader’s decision. But I wasn’t preoccupied with the intent; I was preoccupied with the message that a decision like that might send to my increasingly aware daughter. A message that said: “You’re different, and we should probably hide that.”

If I’ve learned anything over the past two years, from our twenty-week scan to the running toddler I have before me now, it’s that being different really is awesome. I’m fiercely proud of Hero’s uniqueness, her abilities that blow us away every day, and I can only hope and pray that one day she will feel the same way too.

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My favourite piece of artwork Hero made at a baby group last year 💖

Parenting is all about learning on the job. Add a difference or a disability into the mix and that sense of flying by the seat of your pants is increased. We’re not only getting to grips with our ever-changing child, but we’re also learning all about a world of different abilities that we knew nothing about before. I’ve learned from my chat with the craft leader that maybe I shouldn’t assume that everyone else has the same levels of confidence and comfort around her difference.

I now know that the message I need to spread to her future teachers and caregivers is: please don’t be ashamed of my daughter’s difference. Instead, celebrate it. Celebrate it in artwork that is as one-of-a-kind as she is. If that means her reindeer has wonky antlers, then rest assured that that’s the only reindeer her parents really want to pin on their wall. The reindeer that is as special as she is! And if you still have any doubt at all: ask! Don’t ever be afraid to ask. The differences of our children aren’t as new to us as they might be to you, and we’re highly unlikely to be offended by any kind of polite curiosity. And, while I’m not speaking for every parent of a child with a difference out there, I’m speaking for myself and maybe even for a few more: Celebrate, ask and then celebrate them some more!

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This is my favourite quote. It’s from the wonderful creator of the awesome Lucky Fin Project and it couldn’t be more true than in this situation.

 

 

 

 

Finding the perfect response to an imperfect situation

Finding the perfect response to an imperfect situation

A few weeks ago we had a pretty unpleasant experience when a group of people laughed at Hero’s little hand. It was a group of adults, and they actually laughed. What made it worse was that they had a child with them who, following their example, strained across to stare as well.

Hero had been sucking her little hand like a dummy. It’s happened before, when someone reacted with innocent wonder at the idea that she could somehow fit her entire fist into her mouth. It’d certainly be some party trick if it were true! Only, on that occasion, the person in question had the decency to be deeply apologetic when they realised that she didn’t actually have a fist to fit in.

Unlike that previous time, this one was a whole different kettle of fish, causing a cascade of emotions that knocked me for six for a while and seemed to encompass a whole spectrum of bewildering feelings.

Disbelief

When I first noticed them laughing and pointing I just stared in horror. I couldn’t believe what I was seeing. Surely, surely, people don’t still do that kind of thing? The world’s moved on from the medieval times, when being different singled you out. Now we have disabled presenters on TV, we have a whole raft of paralympian role models. We have no room in our lives for ridicule and prejudice like that anymore.

And then of course you have to ask, what exactly was funny? What could possibly be funny about child who was born without a hand? It’s not tragic. It’s not terrible. It’s not even bad, despite what they might think, but it sure isn’t funny.

Rage

This one is obvious. I couldn’t just stand by and watch someone ridicule my daughter. I was obviously going to march right up to them and say… what exactly I would have said in the theatre of my mind, I don’t know, but it involved a lot of gesticulating and unrepeatable words.

Needless to say, I didn’t march across the restaurant and start swearing blue murder at these people (although a tiny piece of me wanted to). My intense hatred of conflict aside, I tried to picture Hero doing that. I pictured her marching up to someone, her face contorted with rage, reeling off a load of swear words and giving them what for.

What a horrible thing to imagine. That aggression and that anger is the last thing I’d want Hero to parrot. And we are, despite not having a clue what we’re doing, her biggest role models. She will look to us for how to react in these situations and I won’t teach her manners as poor as those who were laughing. We don’t want her to have to live in a world where feeling that level of rage is the norm. Right now, she’s so innocent and sweet and lovely. To see that level of anger and rage mirrored in her face would feel like the end of her wonderful childlike innocence.

Heartache

I’m not sure what word to use in this context. It’s not grief, but I’d be lying if I said my heart didn’t ache. It did. A lot.

It was heartache at learning that someone could be so utterly cruel to my beautiful, talented and just all-round awesome child, that they could be so cruel to anyone’s child. It was heartache at realising that, despite having been lulled into a false sense of security, she is going to have to deal with incidents like this throughout her life from time to time. I dread the day when our wonderfully happy child, who loves almost everyone she sees, realises that somebody is laughing at her or judging her unkindly. It was the understanding that she will have her own demons and insecurities to overcome and that, no matter how much we build her up, idiots like that might be able to knock her down in a careless second.

Understanding

After a ten-month honeymoon period, after ten months of hearing nothing even slightly unkind, to learn that this stuff will happen was frightening. And worse than the knowledge that this kind of thing might happen, is the fact that we will have to deal with it when it does. We can’t deal with it how we might want to, as over protective and instinct-driven parents. We have to deal with it in a manner that we’d like to equip her with. We need to model a response that shows her how to take the moral high ground.

Although we might want, even if just for a second, to leap hell-for-leather off of that moral high ground and drag any unkind and insensitive soul into the mud – we just can’t. Although we might want to just cry hysterically and let those people make us feel  less than we are – we just can’t. We have to be better than that, because she deserves better role models than that.

We want her to know that it’s ok to feel upset, that it’s ok to feel angry from time to time, but that you cannot let those emotions rule you and dictate your actions. You can wallow when you need to, but you shouldn’t make decisions that you might regret based on those flashes of red.

What happened next…

In the end we chose to walk away. I hung back, allowing the party to depart before us so that we didn’t have to bump into them on the way out. By the time we got to the car I was shaking and crying as all of the above started to rush about my head. I didn’t know how to react then and I still don’t now, because I’m not just responding for myself anymore, I’m responding for Hero as well. That complete immobilisation is something we as a family now need to find a solution to. Will we come up with some choice educational phrases or will we simply learn to ignore it? Is there a perfect response to an imperfect situation?

Finding an answer to this is made a little more complicated by us both approaching the situation from entirely opposite directions. My husband wasn’t as upset as I was and, from his foundation of self confidence, he won’t ever be as upset about that kind of experience as I will. He’s much more able to separate himself from the unwanted opinions of unknown people, whereas I will always take them deeply to heart. His upset will come on the day Hero understands what’s happening, the day she is upset is the day he’ll be upset, where as I will feel it all in advance as well.

It’s taken me a few weeks to process what was a few short minutes of experience, to distil it into something I could put into words. I too wanted to follow my own advice; I didn’t want to commit my flash of rage and deep upset to the pages of time. I wanted to slow down, to take a step back and to understand what had really happened. Initially people told me to feel sorry for the people in question, but a few weeks ago I simply couldn’t do that. Time is a miraculous soother, however, and I now see the point people were making. How much poorer their lives must be, as well as the life of their child, living in the world of intolerance they’ve created. At the end of the day, it’s their loss and not ours. At least, that’s what I’m telling myself.

Perhaps more helpful to remember, both for Hero and for myself, is that for every one person who is mean or insensitive, there are hundreds of thousands, if not more, who are are accepting, curious and kind. May the odds be ever in our favour!

 

 

 

Sticks and stones

Sticks and stones

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

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

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

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

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

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

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

A letter to when I was a limb-difference learner

A letter to when I was a limb-difference learner

As Limb Difference Awareness Month has ended, so too has another chapter of my life. But endings are not necessarily sad things. To quote a popular cliché, ‘when one door closes, another door opens’, and this particular opening door is one most welcome.

April has been a big month in the Though She Be But Little household. Our lucky fin baby has gone from crawling, to standing to thinking about trying to walk (albeit with a lot of wobbling and support) and, perhaps the biggest of all, she’s also learnt how to hold objects with her little hand. These massive milestones have closed the door on a chapter that, for me, started just over a year ago. It was a chapter I never saw coming and it was a chapter of worry.

All these wonderful changes have got me thinking back to the old me; large, pregnant and beside herself with fears and emotions she didn’t even understand. Now that I’m here, I wish I could reach back over the past year, back to the Spring of 2016, and tell my old self some things. Some things I know that she wouldn’t be ready to hear just then, but that she would be ready one day, in the not too distant future.

  1. You won’t regret your choices.

For the rest of your pregnancy, you won’t shake the notion that there could be something else wrong with your baby, something they haven’t picked up on the endless scans. All these scans (you’ll lose count of how many by the end, but it’ll be somewhere near 20) tell you that the doctors think there might be something else to find. Each time you go for another scan the news will be different, one day she’ll be too small, one day she’ll be fine, one day her arm will be tiny, the next day it won’t. Worst of all, these scans are happening because you rejected one invasive but conclusive test. When you’ve been told your baby is 1 in 32,000, the 1 in 100 odds of a miscarriage caused by an amnio test seem frighteningly high. Despite all the subsequent investigations, scans and consultant visits, you won’t regret not having that test. You know it could have taken away much of your stress just like that, but right from the moment you first saw her jumping about on the screen, your baby’s safety was and always will be worth far more than your own fear and worry. You are right to follow your instincts, they are the best and most comprehensive parenting resource you’ll ever have.

  1. The emotions you’re feeling now are ok. 

You’re new to this whole limb difference thing, you’ve never even seen anyone with a limb difference before. You’re about as limb different unaware as it’s possible to be. You don’t know what’s in store. Your mind is full of all the other ‘what ifs’ and near misses. You’re terrified that your daughter will struggle through life. You’re devastated to think of the challenges she might face, both socially and physically. And yet you spend so much time feeling guilty for how you feel. Compounded over and over by well-meaning comments. They’re trying to make light of the situation for you, but you’ll feel sometimes that your emotions are being undermined. You will come to understand all of the things they’re saying to you, but you’re not quite ready yet. You’ll learn that the only people who can really relate to you are other parents in the limb different community. Find them, join them and talk to them; they will understand what you are going through better than you do yourself right now (you can check out our links page for some fantastic resources and blogs). You’ll keep comparing your own worries to those of others. You certainly know how much worse it could have been. You’ll worry that because your problems aren’t as severe as others that they’re not worth a damn. Let me tell you now, even though you’ll carry on doing it, that you should not compare. Some people have things far worse, challenges far greater and higher mountains to scale. Likewise, some have things a little easier. Neither side of the equation invalidates how you’re feeling right now. Right now it’s ok for you to fear the unknown and for you to be a little heart broken for your baby. You’ll trawl the Internet for information and you won’t be ready just now to hear the positive news from parents all around the world, but you will be soon.

  1. Telling people is absolutely the right thing to do.

You’ve agonised whether to ‘announce’ to your friends and family that your baby will be born with a difference. Right now it feels like the biggest thing in the world to you. Maybe to others it’s not so huge, even to you, just a year from now, her difference will hardly matter. But right now, at this very moment, it’s pretty huge. Telling people will end up giving you the chance to celebrate her birth without worrying about their reactions. It’ll ease your anxiety once people know. When she’s born, all you’ll see on their faces will be joy and love and happiness. Telling people now will allow you to make the most of those precious months of knowledge that you were given. So many are shocked to discover their baby’s difference at birth. You’ve been given the gift of knowledge; use it in whichever way is right for you.

  1. When you get to meet her for the first time you’ll relax, but only a little bit. 

You will be so utterly relieved in the wake of her birth that her time in intensive care will not stress you out as much as you’d expect. You’ll know that she’s going to be ok. You’ll know she’s safe. You’ll know she’ll be well. However, all that relief and joy won’t quite mask that residual underlying fear. You’ll still worry. You’ll hold your breath every time you spot another consultant around her cot and you’ll chew on your nails whenever you receive a hospital appointment for her in those early months. You’ll feel fraught when she refuses to gain weight and the consultants are looming yet again. You’ll still bristle a bit when people make light of her difference. You’ll still be caught unawares by the little break in your heart when she tries to hold your finger with a hand that isn’t there, or when you see her try to reach out for a second toy only to give up in disappointment. You’ll feel that way for a little while yet, but not forever.

  1. She will blow you away. Every single day she will make you proud. 

Once she’s home, you’ll watch her every movement, you’ll agonise over how she is using her little hand. You’ll fret that she isn’t using it. You’ll stress. You’ll encourage. You’ll cheer. You’ll cry. Then one day, around about a year from now, all that will change. Around about a year from now she’ll climb up onto her knees and she’ll crawl. She might have a few bruises on her head where she’s toppled over her little hand. But you know what, she toppled over and then she got up. Again and again, she got up. This moment will close the chapter on your worry. It’ll close the chapter on your fears for her future and there you will be, sitting beside those other proud parents of limb different kids, and you’ll know in your heart of hearts that she’s going to be ok. You’ll at last understand what they’ve been telling you all along. That one simple act of moving herself forward across the floor, of getting bored almost instantly of the crawl and pulling her self up to stand instead, will change your world. Those two little milestones will shout and scream to you that there is simply nothing this kid won’t be able to do. She wants to play hockey, like her Dad? She’ll make that happen. She wants to turn cartwheels across the floor? No problem. She’ll find a way with your help if need be, but she’ll probably neither need nor want it. You’ll turn around one time and there she’ll be, sat on the floor, holding onto two toys. Two of them. One will be clamped in her fist the other tucked against her body with her little hand. And she’ll have no idea how intense and all consuming your pride is, how immense your relief and how great your joy, at seeing this one seemingly insignificant act. She’s showing and telling you, with every new thing she learns, that she is going to be A-Ok and that it’s time for you to stop worrying.

Listen to her: she’s right.

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One hand, two toys!

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