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.
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.
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.
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.
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!)
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.
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.
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.
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.
We have received a great number of blessings as a result of our daughter being born with a limb difference. The biggest and most significant, of course, being the sheer joy our daughter brings to us every single day. I do worry sometimes, if I’m this proud of her simply for picking up a sippy cup, or eating a yoghurt, what on earth will I be like when she starts making more significant achievements? But oh what a wonderful worry to have!
A third thing that came out of our limb difference experience has been in getting to know a little more about my great-granddad. John died two years before I was born and I never got to meet him. I should have asked more questions growing up, but at least I’m asking them now. It wasn’t until we told our family the news about Hero’s difference that I found out that my great-granddad had also been missing a hand.
I’ve no doubt that having been raised by a man who was also missing a hand, yet never let it get in his way, really helped my own granny to worry less about Hero. Being part of the limb different community is amazing and gives Hero friends and peers her own age with similar conditions to her’s. But imagine finding out that one of her ancestors lived life the same way she does. He held his cups the same way she does. I wonder what advice he would have given Hero?
In his absence, I decided to try and build up a little bit of a picture about the man who came before us (I can only imagine what kind of face he would have pulled if his ‘stump’ had been referred to as a lucky fin!). I’ve spent time chatting with my granny and my dad about him and have created a memory book that I hope Hero will look back on with a sense of affinity and belonging one day.
The making of a lucky fin
John Knight was born in 1902 with ten fingers and ten toes. At the age of 17 he applied to join the army and made it through all the medical checks. To pass the time between his medical assessment and his joining date, John worked as a labourer on a local farm.
He was bailing hay one day when things didn’t quite go to plan. He fell and instead of grabbing hold of a ladder rung to stop his descent, he accidentally seized the blade of his bailing knife instead. My favourite part of this horrific story, which still makes me cringe, is that in true style John didn’t wait around for help. He got on his bike, with his left hand hanging off, and cycled the few miles to the hospital himself!
The evolution of prosthetics
One of the most exciting things about having a child with a limb difference is in watching the phenomenal leaps and bounds being made in the field of prosthetics. From the 3D printing champions making hands on a budget, to the high end six figure bionic limbs that are gaining ground in the media. I look forward to the day I get to be a little be envious of Hero because of the awesome gadgets she has!
Back in the first half of the twentieth century things obviously weren’t quite as advanced, but that didn’t make new adaptations any less exciting for Great-Grandad. Usually he used a hook on the end of his arm but one year he was given an upgrade to a prosthetic hand where the fingers opened and closed to grip when you pulled a chord attached to the mechanism. According to Granny he was super proud of his new adaptation and maybe even a little cocky.
There was a memorable time when she got on the bus with him and his new arm. He put put the ticket money into the palm of his new hand and when the conductor came around to collect the fares John took great joy in popping the hand open using the chord. My granny said she thought the conductor nearly died of shock! That’s exactly the kind of humour that I hope Hero will channel. I hope she’s proud and takes joy from her difference, even if it’s maybe at someone else’s expense from time to time!
Three hands, two wheels and a hook
Most of the stories my granny had to tell me about Great-Grandad John were hilarious. They demonstrated his sense of humour and fun as well as his complete lack of self-pity despite experiencing a life changing accident at such a young age.
One of my favourite stories involved a tandem bike that my granny and gramps used to own. One day John and his son in-law, Barry, were cycling on the tandem. Barry was going a little too fast for John’s liking. Unfortunately, without a hand gripping onto the handle bars was impossible and John’s hook kept sliding along the handlebars and pinching Barry’s backside. Far from making him slow down, Barry shouted to John to watch what he was doing with that hook and to just keep bloody peddling!
Hanging on by a hook
Some of the stories I heard are easy to laugh at now, with the benefit of hindsight, but were probably pretty terrifying at the time (pinching your son-in-law on the backside while speeding downhill on a tandem bike is probably one of those from John’s point of view!). This next story, which also involves John’s hook, is one of those.
Since he was no longer able to join the army after losing his left hand, John carried on his work as a labourer – nothing as trifling as a missing hand was going to stop him! One of these jobs was in the quarry of a cement works. On one memorable day John was standing on the back of a lorry, levelling the sand out ready to be delivered to the cement mixers.
The driver of the lorry was a bit over enthusiastic that day and set off driving, without realising that my great-granddad was on the back. Unsteady on the mound of sand, John fell but his hook caught on the railing of the lorry and he was dragged across the quarry, unable to let go. The other workers around the site ran along side and started waving and shouting at the driver to stop. Not realising the emergency he waved happily back at them and went on his merry way, taking John with him!
Luckily for everyone, the driver had to stop at a checkpoint before leaving the quarry and John was unhooked from the railings before he could he dragged further down the road. The story was really entertaining when Granny told it to me, but somehow it seems a little more alarming now I’m writing it myself! I’m sure it was one of those things that you could look back on and laugh about, but could have had an awfully different result. When you take into consideration his initial accident, coupled with this event in the cement yard and many others I’m sure, he certainly seemed to be a man of nine lives and lived every one of them to full.
It’s ability not disability that matters
One of the key things that came out from hearing all these wonderful stories about Hero’s great-great-granddad was how, day to day, his family and friends didn’t think anything of his limb difference. It just didn’t seem to be a big deal, because he didn’t make a big deal of it himself. As Granny put, in his later years he would simply put on his hook and head off for a busy day at the allotment with his trusty terrier sitting a ‘top the wheelbarrow.
One lady who John worked for in his retirement wrote to my granny after he’d passed away in 1984. She was incredibly forthcoming in her praise for his personality, determination and manners after she had gotten to know him well while he worked on landscaping her considerable garden.
“Needless to say, I was a bit uncertain when he only had a hook instead of a left hand but I was so taken with his wish to be useful and his clear determination not to be “retired”, that I decided to chance it. Of course, I found out in no time that I hadn’t taken a fumble, I had made a bet on an absolute cert.”
Throughout his life he was husband, father, labourer, almost soldier, darts player and gardener, among a myriad of other things. He’s been described as a bit of a monkey and a rascal, using his stump to create humour and to make people laugh. Such a stunningly happy man, who was often laughing and chuckling. These labels aren’t always associated with the stereotypically negative idea of a disabled person. There’s a reason that I don’t describe Hero as having a disability and that’s because she obviously and palpably doesn’t. She might have to go about things a bit differently, she might even struggle with some things, but she’ll do them.
My granny could think of one thing, and one thing only, that her dad struggled to do with one hand and that was taking heavy and hot dishes out of the oven (before the proliferation of oven mitts!). That doesn’t seem like a hugely limiting challenge to me, and with perseverance he found a way around that too.
I know that her great-great-granddad wasn’t born different, as Hero has been, but his attitude against having only one hand, in a decidedly two handed world, is something that I deeply hope has carried down through the generations. If she’s having moments of doubting her ability, I’ll be sharing the stories of John with her and letting her know that she’s not the first to be different like this and that through family memories, hilarious stories and through the communities of which we are blessed to be a part, she certainly isn’t alone.
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‘.
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.
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.
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.
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.
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.
As a parent, finding out that your unborn or newborn child has a disability or a difference can be incredibly frightening. Even without the myriad of other complications that can be suspected with any kind of in utero anomaly, it is quite alarming enough by itself.
When doctors first discovered Hero’s limb difference at our 20-week anomaly scan, we were catapulted from a blissfully uncomplicated midwife-led pregnancy to suddenly being referred to a multitude of different consultants, across two different hospitals. In the first weeks after that scan we were told that Hero might not be compatible with life, and if she was, there was a chance that she would be severely disabled and have a limited life. We were told that termination before the 24-week cut off point might well be preferable. Happily for us, that turned out to not be the case. And we count our many blessings for that every single day.
During that frightening time we, as hopeful and terrified parents to be, had absolutely no room to be worrying about anything or anyone else. Particularly for those early days, we couldn’t see much outside of our own little bubble of uncertainty. I don’t think I truly emerged from it until Hero was months old. It was only really when she started crawling and using her little hand for every thing, that I at last truly believed that she would be perfectly ok.
Since then, with my head finally out of the clouds, I have started thinking back to how that time must have been for other people. A family often extends well beyond simply the parents, after all. We have sisters and brothers, aunts and uncles and grandparents, all of who went through this experience with us.
Perhaps in many cases the closest extended family members to the metaphorical ‘front line’ are the new child’s grandparents. They not only have the infant’s best interests at heart, but they also have their own children to support. Nowadays it can often be the grandparents who are out there on the internet and doing the research when a diagnosis is received. It can often be grandparents who are reaching out to charities such as Reach in the UK and the USA-based Lucky Fin Project. As more and more grandparents turn to the internet for answers (answers that won’t always be found), we at Though She Be But Little believe that it could make all the difference if grandparents are able to find information for themselves as well as validation for their experiences and feelings.
I’ve had a number of grandparents of children with a difference like Hero’s reaching out to us here at Though She Be But Little. It got me thinking about what the whole experience must be like through the eyes of a parent of a parent. When we turned to the internet there was lots of information geared at parents; at the time there never seemed to be enough, but it was there. If you visit the Reach website there’s a wealth of information devoted to parents at every stage of their child’s journey. It’s an absolutely wonderful resource and if you haven’t checked it out already, I implore you to do so!
The Circle of Grief Theory
According to the Circle of Grief Theory, in difficult times emotional support needs to be paid inwards towards the person most affected by the events. In this situation, the baby is everybody’s focus; however, it’s the parents who are at the centre of the circle. In most cases, the baby has no idea that anything is even amiss after all. The parents’ only priority during a challenging time like this should be to care for the baby and for themselves. But where then do grandparents turn, if they are on the next ring out? When their child is going through such a difficult time, who can they turn to?
As my curiosity grew about what our experience had been like for those in a wider circle than me, I turned to my own parents and to my husband’s. For the first time I asked them what it had been like looking on as we had received that news. Alongside them, I interviewed a number of grandparents from Reach and Lucky Fin families to find out how the experience had been for them.
“We were very upset, not necessarily about the hand but I didn’t want my daughter to go through that. It’s stressful enough having a baby without the added stress and upset of dealing with the unknown. Missing a hand is one thing but there was also no guarantee that everything else would be all right. It just wasn’t fair.” – Paul, UK
It was about us as parents, not grandparents
“My initial reaction was to comfort my daughter but I just couldn’t believe it. At first I was thinking it was all probably a mistake.” – M, UK
One of the most common things grandparents said to me was how they were worried and upset, not only for the baby, but for their children too. As parents all we have to worry about is our baby, and ourselves. For grandparents they’re not only concerned for the baby, they’re concerned for their own babies too, creating a real double layer of worry and grief.
“My first reaction was shock, I kept thinking about my daughter and how she was feeling. I was worried about telling my own mum and other family members, I was worried about their reactions.” – Muriel, UK
“It wasn’t really about us as grandparents, it was about us as parents.” – Paul, UK
Input from the experts
“I remember my sister saying she’d nearly bought a card with words saying; “10 little fingers and 10 little toes”. I felt sad thinking about that. It’s only a little thing, I know, but hits you hard.” – Muriel, UK
Being far from an expert in these things, I reached out to an NHS specialist who deals with families in these situations every day. The specialist told me that, for grandparents, the need to support their own children could cause a real fear of saying or doing the wrong thing when a difficult situation arises.
“Many grandparents tell me that they didn’t know what to say [to their child]. They were frightened of saying the wrong thing, or even of being too positive if their child wasn’t ready to hear that yet,” she told Though She Be But Little. “Sometimes they just don’t know how to approach the topic or to start the conversation. There’s a very real fear of just getting it wrong.”
On top of this apprehension about supporting someone you love through a completely uncharted situation, grandparents also need to process their own very real responses and emotions to the news that their grandchild is different. The aim of this project, in part, was to offer some much needed validation and acknowledgement that the experience can be emotionally demanding and frightening for grandparents too, although often these feelings can be lost amongst the need for immediate action and support of others around them.
“I was distressed when we heard the news of my daughter’s scan. Looking back the shock wasn’t just about the hand, it was the deep fear that there was worse to come.” – Carmen, UK
We didn’t know [about her difference] until she was born; my wife came back into the room where myself and the father were at, crying hysterically. She didn’t know how to react after finding out that [our granddaughter] was missing part of her right arm. I thought that she or my daughter hadn’t survived. – David, USA
Our darkest fears
“I was worried about how he would be able to cope and how other people would react to him,” – M, UK
The initial fears and responses of the grandparents I spoke to were so similar to my own painful worries as a parent. How would Hero cope? Would she be bullied? Am I able to give her what she needs?
One of the deepest and darkest fears during my pregnancy was that I would somehow be horrified by the look of her little hand when she was born. It was something I didn’t feel comfortable admitting back then. We went so far as to have a 3D scan to try and see her hand while she was still in the womb. Throughout the whole scan she kept that arm hidden behind her head and out of sight. With hindsight I’m able to look back and think that it was hidden for a reason. It was hidden from sight because absolutely nothing about my daughter’s appearance could ever upset me, only I didn’t know that back then. It’s not just parents who have these fears and concerns. For grandparents too that sense of facing something, that in many cases is completely unfamiliar and unknown, can be just as daunting as it is for the parents. We simply don’t know how we will react when confronted with something so new and unexpected.
“In these situations people can be grieving for the ‘perfect child’”, our specialist told us. “There’s a worry about attachment and questions of ‘will I bond with my grandchild?’”
“I was worried I would be ashamed of my reaction. But as soon as I saw her and I saw her hand I wasn’t the least bit shocked. It’s changed my whole view of perfect now; I’ve seen that things can be totally perfect even if they’re not,” – Carmen, UK
Every day: Amazing!
Fears about how the child will cope going through life with a difference that will not only affect their their sense of fitting in, but also their physical ability as well, are of course the prevailing concern. It’s very difficult, having grown up with two hands, to imagine how something could possibly be achieved with just five fingers, or sometimes even fewer.
“I am still worried about the operations she will have in the future. But I worry less about people and their reactions now; I just love her for who she is and the joy she gives me,” – Muriel, UK
And yet, despite these very real fears and concerns, almost every grandparent we spoke to said that, while they still worry from time to time, their grandchild has grown up to amaze them every day. Fears are being defied and expectations are being changed. These kids are wonderful, and talented and able. This genuine outpouring of pride and love, I hope, will go someway towards reassuring grandparents who are new to the limb different journey. The future might seem bleak at first, but it’s bright and wonderful and every day these kids are amazing!
“Yes, we do still worry about her, but we can see that she is coping very well. She has a lot of good people around her and has had a lot of support from Great Ormond Street and Reach,” – Kim, UK
“We were baffled like all new parents or grandparents when she was born as to what she would need, how we could help, where would we turn for help or guidance. It was a bit scary at first but then, to watch her grow, get older and develop, we knew she would be just fine with our assistance and the wonderful world around her!” – David, USA
“He’s coping so well because he’s never known any different!” – M, UK
Are you a Lucky Fin grandparent?
You can use the comments section to share your experiences around the birth 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. Thanks also to Molly from the Lucky Fin Project and the Reach community. I would also like to thank our specialist contributor, who works so hard every day to change lives for the better, yet who still found time to talk with me for hours about the wonderful grandparents she works with.
This article is Part 1 in a two part series.
Part 2 will explore the vital role that grandparents play in supporting their children and their grandchildren born with a limb difference. We will have expert advice from our professional and hear from parents about the things their parents did that made all the difference. You can check our Part 2 here!
📷Credit for the beautiful cover photo goes to Amy-Jane Evans and Poppy – thank you for sharing the love! ❤️
Here are our baby photo stars, Ryan, Hero, Blakelee and Isabelle as they are today: Utterly fintastic!
I suffered a complete sense of humour failure in a supermarket last month. I was knackered after a long day and I was probably a tad hormonal. I had stopped off for some groceries on my way home and, as I always do, I took a stroll down the toy aisle. I passed a standout-shelving unit with about thirty copies of the same board game on it.
The game was called ‘Get a Grip’ and it was a ‘hilarious’ family game that required you to wear restricting bands around your hands to remove the use of your thumb while you completed certain tasks, such as writing, drawing or sculpting. I know, I could have walked past and thought nothing of it. But I was not in the passive mood, so I took down the box.
“Watch how simple tasks become hilariously hard!”
Hilarious? Enter expletive of your choice, hilarious? I almost marched to the check out, stamped my foot and demanded an explanation from the poor late-night duty manager. With the luxury of hindsight I appreciate that many, in fact probably most people in the world would find no reason to take offence at a game like this. But on that day I was woefully lacking in a wider perspective. I was looking at that game from the point of view of a parent of a limb different child, a child who will one day struggle with these same simple tasks, and for whom it will be anything but funny. I was looking at it from the point of view of a mother who, despite loving every single thing about her little girl, feels fiercely protective of her and can only hope and pray that she’ll love herself as much as I love her.
Like picking at a niggling scab, I obviously had to Google the game as soon as I got home. As I scrolled through the advertising images my heart got a little more raw, a little more rageful. One of the photos was of two children trying desperately to button up a shirt with no thumbs and laughing at the sheer hilarity of it all.
I didn’t find the idea of struggling to do simple tasks that most of us take for granted very funny at all. I kept thinking back to the many videos I’ve seen of young kids with a limb difference learning to do up their own buttons, or to tie their own laces. I kept thinking of the utter pride and joy on their faces that spoke volumes of the perseverance and the effort that had gone into obtaining that goal.
Needless to say, I’ve calmed down a bit since then. I never did draft the furious letter I was thinking about sending, both to the store and to Hasbro Gaming. I spoke about the game with many people whose opinions mean the most to me and I realised that my frustration, while probably entirely justified on a personal level, just wasn’t worth acting upon.
I can’t expect the world, this decidedly two-handed world, to conform to my every concern. While I’m so embroiled in the limb different community that sometimes seeing two-handed babies looks a little odd to me, I need to remember that Hero, and those with a difference like hers, are but one in over 32,000. They are beautiful and a rare gifts. The world isn’t able to completely cater for every single difference out there and as one sage friend pointed out to me; should my rage about this game mean that ‘Pin The Tail on the Donkey’ and three-legged races should also be banned? They all take enjoyment from enacting a physical impairment after all.
On another level, this game could actually serve to raise awareness about what life with an upper limb difference might be like, all the while bringing a laugh and a smile. Of course, growing people’s understanding while they’re having fun can hardly be a bad thing. Even though it’s ok for me to be a bit mad, it’s also important to acknowledge that this game wasn’t invented with any kind of malicious intent in mind (or so I hope). Maybe I just need to see things from a different angle; maybe I just need to get a grip myself!