Now you are two: Lessons learned from my lucky fin daughter

Now you are two: Lessons learned from my lucky fin daughter

And now you are two.

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.

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The first time I saw you ❤️

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!

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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.

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They’re actually staring at your smile

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.

“It’s that moment when you stop and realise that you and your husband won’t be able to hold your daughter’s hand at the same time.” – Trying to find a little peace of mind, 2016

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.

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The sky’s the limit!

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.

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Happy birthday my little lucky fin!

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!

Temporarily one-handed

Temporarily one-handed

I fell over on Wednesday, clambering down a shallow bank in pursuit of my daughter who was hovering close to the river’s edge. Unfortunately for me the bank was wet where my river-bound dog had been dripping everywhere and the next thing I knew I was on the ground and my wrist and hand were in a shape and position I hope sincerely I never see again (although I do have a lovely x-ray photo for posterity, I probably won’t be pinning that one to the fridge!).

Fast forward through a pretty traumatic wait in the mud, bumpy ambulance ride and horribly conscious realignment at hospital and I’m home, plaster casted to the elbow and in a sling. Over night I’ve completely lost the use of my right arm. As someone who blogs regularly about raising a daughter without a right hand the irony hasn’t been entirely lost on me.

I can’t so much as lift Hero up or change a nappy, which I’m finding an incredibly difficult transition to make, despite knowing it’s temporary. Cue a huge amount of people offering and willingly giving a vast amount of time, support and help. That’s the weird thing about an injury like this, you’re the one in pain and grumpy, but it’s everyone else around who is really impacted. And thank goodness for those people and that help – I can’t thank them enough.

Luckily for me I’ve spent the last two years of my life watching videos on how people get stuff done with one hand. So when my sling unravelled itself this morning (ouch!) I initially had a panic. I was home alone, should I wander down to my neighbour’s house in my PJs and with half a dressing gown on? A pathetic sight to start anyone’s day! Then I spotted one of Hero’s hair elastics on the windowsill and I thought back to the number of awesome “how I do my hair with one hand videos” I’ve seen recently. Some fumbling, one flying elastic and a little teamwork between left hand and teeth later and we’re back in business and feeling rather smug.

Hero and I are going to have some adjustments to make over the next six weeks. Like how do two left –handers hold hands comfortably? I think there’ll be a bit of may pole dancing going on! At least she can rest easily that she won’t have to undergo the daily torture of having her hair put into a ponytail for a few weeks and those snazzy plate dividers might find themselves coming in useful for more then just one of us!

 

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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Five fingers, feathers and a faux pas: A sad day for limb difference awareness

Five fingers, feathers and a faux pas: A sad day for limb difference awareness

I made a little faux pas today. Unfortunately, while it seemed small at first, it was the kind of faux pas that might have far reaching consequences into a young girl’s future. It may even have scarred her for life. I feel terrible, of course, no more so because I failed to rectify my mistake at the time; no one wants to be the source of a child’s life-long fear.

Obviously, (at least I hope) I’m joking to some extent. It was hilarious as soon as I realised what had happened. Although, in reality, there might be some follow-up conversation required by the family involved!

It all started with the sun. It was the first time we’d seen it in months and to celebrate Hero and I headed out to visit a near by farm park for the first time. We did all the usual things, and we bought a bag of food to feed the animals. Well, I fed the animals at any rate. Hero tried twice to feed the sheep her five remaining fingers, so we’ll have to wait a bit longer until she’s mastered the flat-palm approach before she can safely do the same!

We spent a lot of time at a large cage with a few birds in it. The birds were fairly unimpressive in my opinion, the kind of birds we get hundreds of in our garden. But that wasn’t the point. Where Hero is concerned there is no such thing as a boring bird. Hero’s reaction to spotting a bird is something like I imagine a life-long Nessie hunter would feel after finally discovering that the prehistoric beast was real. It’s wonderfully, outrageously over the top with excitement.

She was poking her fingers through the bars of the cage (it was a very big cage, and there were very few birds in it, so I wasn’t too worried) in order to point very specifically at each bird, you know, in case I hadn’t spotted it yet. And it was during this moment that a brightly coloured parrot, one we didn’t even know was there until that point, dive-bombed her from on high and pecked at her index finger, drawing blood. (Life lesson: Don’t let your child put their fingers through the bars, even if you think the cage is empty!)

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This was taken before we learnt our life lesson…

There were of course a lot of tears and upset and, even after we’d washed her hands and carried on our journey around the park, Hero was a lot more hesitant to approach the animals too closely. She was just as fascinated and excited, only from a safer distance this time! I hoped that, by the time we reached the giant duck enclosure (the ducks were giant, as opposed to the enclosure – although, that was also a goodly size) that she would have recovered her earlier abandon. But unfortunately, she was instead a bit clingy and was bordering on tearful.

Enter stage right: A sweet little girl, out for the day with her family. She couldn’t have been more than four years old and she was a little concerned about Hero’s welfare. So I explained to the girl that Hero had been bitten by a parrot earlier on and that she was a bit nervous about the ducks. Job done. Situation explained – or so I thought. The little girl was quick to reassure Hero (erroneously, I believe) that the ducks were completely harmless and I was really touched by her genuine care. But despite her reassurances, the girl still had a little frown on her face. I had a moment of doubt that perhaps I shouldn’t have mentioned the parrot, maybe this little girl would be nervous around the parrot too now, but I didn’t think more of it than that. Whoops.

The family moved on and that, I thought, was that. At least until I heard the parents of the girl angrily calling her name. I looked around to see that the little girl had broken away from her family and, ignoring their shouts, was running back towards us with a look of great agitation on her face. When she arrived (parents still frantically shouting) she came straight up to Hero, pointed down at her missing hand and with a horrified expression on her face, said: “Did a parrot really eat her hand?!”

This was a bit of a crucial conjuncture in my life. I SHOULD have used this opportunity to, not only raise awareness about limb differences, but also to reassure the girl that parrots didn’t routinely tear off toddler’s hands (as far as I’m aware). Only the next few seconds happened so fast… I succeeded simply in blinking and then laughing in realisation before her family finally caught up with her and whisked her off.

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The tractor was much less frightening!

That poor kid. That girl might be about to go through life thinking that a parrot, a small, cute, innocuous little parrot, swooped down from on high and pecked the hand off a traumatised toddler. And that’s my fault! I’ve been on a campaign to raise awareness and understanding about limb difference for the past two years and I somehow left a girl possibly traumatised for life. I console myself that at least she’s incredibly unlikely to stick her fingers or hands into a birdcage from now on though, so perhaps I’ve at least saved her a nasty peck on the finger!

When we were pregnant with Hero we would joke around a lot as we were processing the emotions. We had a lot of fun coming up with fictional disastrous reasons as to why Hero might have lost her hand; they were stories we secretly hoped she would keep in reserve in case anyone was ever rude. It seems that, inadvertently, I’ve started the tradition a little earlier than I’d planned!

I’ve only got one hand… because a blood thirsty parrot ate the other one.

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Beware the terror from above!

So, to that little girl (and her family), I’m really sorry! I hope that you don’t have nightmares and I very much hope that you don’t develop an irrational (to some extent!) fear of parrots. I’m sorry that I didn’t succeed in raising any awareness this time around. But, thank you for making me smile all the same.

 

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All’s well that ends well

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.

 

A grandparents’ guide to difference: Part 2

A grandparents’ guide to difference: Part 2

When we set out on this venture to celebrate grandparents and their impact on the lives of grandchildren born with a difference, I had a vague idea in my mind that some kind of guide would be useful.

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Hero hangs onto Nanna and Gramps at her busy birthday celebrations ❤️ 

When we received the news at our 20-week scan that Hero would be born without her right hand I trawled the internet for information on what I should do. While I discovered a wealth of information aimed at parents, nothing seemed able to fully answer my question: What the hell should I do?

I realise now that there was no answer to be found; because there is no right thing to do. There is no right way to react. You might feel elation that there isn’t something more serious wrong. You might feel utter grief at the loss of your ‘perfect’ ideal. You might feel terror at the idea of what the future may hold. You might feel excited about the possibilities and opportunities that lay before your child. You might decide to tell the world, or you might hold the cards close to your chest. You might want to consider surgery, or prosthetics for your child; you might shun all adaptations. All of the above, and much more beside, is OK. Everything you’re feeling, or felt, or will feel, is perfectly ok! There is no road map and, as Lewis Carroll once said, ‘If you don’t know where you are going, any road will get you there‘.

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Baby Ryan, the inspiration behind the Lucky Fin Project, with Grandad John ❤️

That’s one of my favourite things about the wonderful Reach community, and the online circle of the Lucky Fin Project: no one judges. If someone said that they wanted to pursue the option of surgery for their child, then those that had decided strongly against it wouldn’t even think of casting aspersions. I wonder if that’s because we ‘get it’? We get that there’s no such thing as ‘the right thing to do’, there is only the right thing for you. Any road will get you there, after all.

As I spoke to the families of children with a difference, it became very clear to me that the same thing goes for grandparents. What is the point in putting together a ‘go to’ guide for grandparents, when what works for one person, might be the worst idea for the next? And so I decided to dig a little deeper. I spoke to an NHS expert, who spends every day helping families to come to terms with differences. I spoke to grandparents, including Hero’s, to find out what the experience of finding out about their grandchild’s difference had been like for them. I spoke to parents from within the Reach community to find out what parents had done to help them through the harder times.

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David getting to know his new granddaughter, Blakelee ❤️

In the last post we touched upon the emotional reactions and turmoil faced by grandparents when they find out that their new grandchild or grandchild-to-be has a difference. Like an iceberg, which carries so much more hidden beneath the surface, I feel like I barely scraped the tip of people’s experiences.

We explored the double layer of grief, where the worry for their grandchild is overlaid with and exacerbated by worry for their own child. One thing we didn’t mention, which I regretted the moment I hit ‘publish’, was how, for some grandparents, there can be an extra twist of pain as their child’s experiences can bring back memories of difficult events surrounding their own pregnancies and birth traumas.

“It was particularly difficult for my parents as they relived their own experience of when my brother was born with Down Syndrome. Their treatment back then was appalling and I had no idea how hard those days had been for them,” a Reach parent told Though She Be But Little. “They didn’t want us to go through the same thing they did. In many ways the whole experience brought us even closer together.”

In part two of this two-part series celebrating and guiding grandparents, I wanted to put together all of the amazing advice I received. As a result we’ve compiled an ‘almost’ top ten tips (9 to be exact!), based on professional advice, and a wealth of personal experiences that stretch far beyond my own. I wanted to take a moment to celebrate how grandparents have made an astonishing and heartwarming impact, and perhaps share some of the things that were less welcomed by struggling parents. I wanted to create a little space on the internet for grandparents to find a pocket of acknowledgement and maybe even a little encouragement and hope tailored just for them.

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Hero and Granny Carmen rocking the floral theme! ❤️

1. Open the conversation. It’s too easy to shy away from people in a difficult situation when you don’t know what to say. If you’re not even sure where to begin, our specialist advises grandparents who visit her to simply acknowledge their shock. This can be a great place to start, as shock is usually something everyone in the situation can relate to. If you’re not sure what to say from there then ask questions. Ask how the parents are feeling and what they are thinking.

“My main bit of advice to grandparents is; please don’t ignore it!” a Reach mum told Though She Be But Little. “ My mum didn’t know what to say to people at the beginning and she wouldn’t bring it up if she wasn’t directly asked about it. On the other hand my mother-in-law is so happy to show people her [granddaughter’s] little hand and just says: ‘nothing’s wrong with it, it’s her hand.’ That’s an attitude I love!”

“My in-laws took the stance of not saying anything to us at all. We had very few phone calls and very few visits. I know some people deal with things this way, but at the time I found it really hard,” another parent told us.

2. Be present. Sometimes simply being there, even if it’s just cooking a meal or making a drink, is enough. Alternatively, if they need space to process and grieve, let them know that you’re there for them and be ready to pick up the phone when they call.

“Useful things that other people did was just bringing food or soup, offering to shop, putting the washing out,” one Reach parent told us. “Just listening without judgment is quite a skill, but a welcome one!”

“My mum was so supportive with the emotional side of things. She also got hold of a midwife to support me,” another parent said.

3. Listen and take an interest. Sometimes there is nothing else to be done but just to listen. Listen to your child’s worries, their fears, their hopes and celebrations. Listen to the feedback following the few or the many medical appointments. Sometimes just showing an interest in limb difference in general can be a huge support for a new parent and it helps to normalise this whole new world.

“Our parents were all really supportive – they merely sat and listened to us and let us talk our way through how we were feeling and what the future will hold,” one parent reflected.

4. Acknowledge that your feelings might differ from your child’s, and accept that that is ok. Our specialist encourages grandparents to try to accept the feelings they are having as their own. She advises grandparents to avoid any attempts to force your child to feel better, or perhaps even to worry more, if their current feelings aren’t in line with your own. Just allow the emotion to be – that includes theirs and yours.

“My mother in law found it very difficult and would get upset about it quite a lot even when I was being positive and optimistic,” one mum told us about the days and weeks following their scan.

5. Research if you want to, but beware of what you do with the results. Turn to the internet (as you most likely have already, if you’re reading this!). There is a wealth of information out there about limb differences, of which Reach and the Lucky Fin Project are just starting points.

“My parents were amazing! They did lots of research but filtered it initially while we were dealing with the emotions,” another added.

“My dad looked at research and ways forward. He came up with suggestions about robotics and stem cells and even contacted professors at universities to ask for their suggestions about current medical research,” one mum told us.

It is essential to be aware that your grandchild’s parents might not be ready for the information yet and that too much information might not always be welcome.

“My mother-in-law Googled a lot and was telling me the bits that, initially, I didn’t want to hear. I now know that most of that scary information didn’t even relate to my daughter! I found that approach hard sometimes as I wanted to deal with my feelings and come to terms with it before going deeper with the information,” a Reach parent explained.

6. Be guided by the parents and be consistent. Once you’ve acknowledged your feelings it’s really important to be guided by the parents in the early days and months (See the ‘Circle of Grief’ in our previous post). Allow yourself to be guided by them and use the language and explanations that they do. Even if that means avoiding words you’d rather use (for example, I absolutely loathed the word ‘stump’, and couldn’t bear anyone using it around me!).

You can say what you like in private, but stick to the rules around your child and their baby. By having a conversation about language early on you can ensure that you are all responding to questions consistently and modelling the best responses to your grandchild, our expert suggested.

7. Avoid the blame game. When something difficult happens it is natural to look for blame, be that looking inwards to yourself or your family, or outwards to others, our expert explained. Unhelpful comments that I received in the early days included the suggestion that I had somehow caused Hero’s difference because I had had anxiety during pregnancy and had worried too much! Another parent told me that someone had queried whether her baby was missing his forearm because she’d gotten pregnant a little later than society suggests we should. Neither true, nor helpful! Neither of these suggestions have any basis whatsoever in science, neither to do they offer any support or positivity to the parent or to the child. In many situations when a child is born with a limb difference there is no genetic cause and the medical opinion is that it is simply ‘one of those things’. Even if it does turn out that there is a genetic link, where thoroughly exploring the medical causes could be vital, directing emotional frustration and blame upon any one individual or family could have catastrophic results for family relationships, our expert cautioned.

8. Don’t forget to celebrate! Once all the dust has settled and the feelings have calmed, you’ll be left with a beautiful, wonderful and a uniquely perfect little baby. Try not to forget that fact and celebrate accordingly when it feels right for you and your family to do so.

“With some visitors I didn’t feel like they celebrated that I had a brand new, gorgeous baby, but maybe I was just paranoid!” one mum explained.

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Every day is a celebration for David and Blakelee! ❤️

9. Reach out. Discovering that your grandchild has a difference of any kind can feel isolating. Following on from the ‘Circle of Grief’ theory that we mentioned in the previous post, it could be a real burden for your child if you turn to them for support. Try as much as you can to pass only support inwards to the centre of the circle, and to pass your own grief outwards to your own support network.

“I remember walking out of the hospital sobbing; all I could think was that my son would be bullied for being different. Thinking back now, my mum was actually really upset by that prospect too, but she never let her emotions show that day,” a grateful Reach mum said.

With the advent of the internet we no longer have to feel isolated, so if you’re feeling any kind of doubt, struggling with your feelings or just want to help others who’re going through what you have, why not reach out?

“My parents and my in-laws actually phoned each other for support, unbeknown to me at the time, so that they didn’t need to burden us with their worries,” one mum said.

If you’re in the UK, contact Reach and see if they could put you in touch with any other grandparents who’ve been through the same thing. If you’re not a lover of the internet, then I’m certain there will be Reach members who would love to meet up for a chat or to talk on the phone. If you’re based elsewhere in the world, why not try the Lucky Fin Project who already have a thriving following of international grandparents?

You could also join the brand new Though She Be But Little Grandparents group on Facebook. It’s a private place where grandparents going through the same thing can talk to one another, share their worries and celebrations and ask questions, without fear of being judged or overheard.

 

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Poppy having a blast with her proud grandparents! ❤️

The above post and tips have been based upon the collective advice from numerous Reach and Lucky Fin Project families, as well as UK-based medical professionals. This ‘guide’, which is in no way comprehensive, was written to support grandparents and wider family and friends of any child born with a difference. However, it is not intended to be definitive or to marginalise any differing viewpoints or opinions.

 

Are you a Lucky Fin grandparent: What advice would you give to someone going through a similar experience?

You can use the comments section to share your advice and experiences around the birth and the raising of your grandchild. We are stronger together!

 

I would like to extend a huge thank you to all of the families who took part in the interviews and shared their personal and heartwarming stories and photos. Thank you also to the Lucky Fin Project and to Reach. I would also like to thank our specialist contributor and the other medical experts who have contributed to this article.