A grandparents’ guide to difference: Part 1

A grandparents’ guide to difference: Part 1

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.

FullSizeRender-9
After a slightly bumpy arrival, Hero was bright, healthy and most certainly compatible with life!

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.

IMG_2043
Hero and Gramps ❤️

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?

ring-theory-graphic1

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 

27604653_2119150311435162_1590788020_o (1)
Baby Ryan, the inspiration behind the Lucky Fin Project, hangs out with Grandad John ❤️

“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.”

(Keep an eye out for ‘A grandparent’s guide to limb difference: Part 2’ for some superb tips from parents and professionals on how to open the conversation and much more. Coming soon to Though She Be But Little!)

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

BlakeleeBaby
 Baby Blakelee meets Granddad David, for the first time ❤️

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

IMG_5653
Hero and Granny exploring the world 💖

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.

27537564_370849130045644_940717935_o
Isabelle with her adoring grandparents ❤️

“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

Blakelee3
No shortage of giggles between Blakelee and Granddad! 😛

“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!

Finally, a game that makes me madder than Monopoly

Finally, a game that makes me madder than Monopoly

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.

IMG_0707

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.

IMG_0708

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!

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

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

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

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

IMG_2545
I haven’t done art since year 9….

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

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

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

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

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

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

IMG_2543
My favourite piece of artwork Hero made at a baby group last year 💖

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

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

24068149_2034906229859571_8068708896958306645_n
This is my favourite quote. It’s from the wonderful creator of the awesome Lucky Fin Project and it couldn’t be more true than in this situation.

 

 

 

 

The hypervigilance trap: a cautionary tale

The hypervigilance trap: a cautionary tale

I almost threw a man overboard last weekend and, alas, I’m not talking figuratively. I almost grabbed the poor guy and hurled him from the top deck of a 19th century war ship.

HMS-Victory_-_panoramio
HMS Victory: aka HMS Hypervigilant

We were visiting the HMS Victory, a stunning ship with a spectacular past, currently parked up in a dry dock in Portsmouth, England. The ship has been restored to as close to its original set up as it can get (only considerably cleaner, quieter and less smelly I should imagine). We had chosen the top deck of the Victory for our lucky fin’s inaugural outing with her walking reigns and we weren’t disappointed. She cruised from bow to stern and back again and only stopped here or there to poke a stationary cannonball or to stroke the shiny plaque where Admiral Nelson fell.

A little history, to help me set the scene: In 1797, on the island of Tenerife, Horatio Nelson received a musket ball to his right arm, just above the elbow. Medical necessity at the time meant that his arm was amputated right then and there. A few years later, during the infamous Battle of Trafalgar, the Lord Admiral wore the right sleeve of his naval jacket pinned up against his chest, as if he was simply resting a hand there in thought. (Incidentally, and largely unrelated, I find it really difficult and a little hilarious to imagine Horatio Nelson referring to his missing arm as his ‘lucky fin’ or his ‘little arm’!)

NPG D21490; Horatio Nelson by George Baxter, after  Lemuel Francis Abbott
Horatio “Nemo” Nelson

Back in the modern day, as we trod in the footsteps of a famous lucky-finned forefather, we hadn’t actually given Horatio’s limb difference a moment’s thought. If I’m being honest, I hadn’t really given the ship a huge amount of thought either (anyone who knows me will know that it takes a lot to distract me from such a significant historical artefact), because I was enjoying watching Hero too much. It’s an odd thing, now that she’s walking, I seem to have returned to that completely besotted newborn stage, where I just can’t get enough of watching her in action. She’s simply awesome!

IMG_0659
Lucky Fin Love!

Anyway, as we made our way towards the bow of the ship in search of the stairs to take us back below deck, I heard a fellow visitor cry out:

“Oh my goodness! What happened to your arm? Did you lose it like Nelson?”

The guy was laughing his head off and talking loudly enough for the entire crew to hear. Now, I tend to avoid conflict like the plague, as followers of my blog will probably have guessed. However, for some reason, this time I swelled up like the Hulk. How dare he bring up her limb difference in such an appallingly callous way. How dare he point it out to us, completely out of the blue, when it was the very last thing on our minds right then.

My shoulders hunched, my fists clenched, I spun around with the full intention of seizing the guy by the shoulders and lunching him bodily over the gunwales. There was going to be no comical splashing into the waters below for this guy, oh no; it was the litter-strewn concrete of the dry dock floor for him!

10450111_10154315178360387_7901010175178477522_o
That was me, second from the right…

As I turned, catching a look of surprise, horror and amusement on my husband’s face as I did so, I noticed another kid on the deck. This boy was about eight or nine and had pulled his arm into his shirt and tucked up the sleeve like Horatio Nelson. As rapidly as my rage had erupted, I seemed to turn back into a human again, my clothing maybe a little torn and my husband a little terrified after an otherwise uneventful transformation. This awful human being, the one who had no idea how close to imminent death he had just come, was actually talking to his son about something entirely unrelated and separate from our daughter (who was still toddling, totally unawares, about the deck).

It took me a few minutes to calm down from this entirely non event. My heart was going like a sail in a storm and I had so much adrenalin in my body that my hands were almost shaking. As we descended below deck, and away from the innocent and unawares father-and-son duo, the word ‘hypervigilant’ came to mind. It’s a term I’d not really thought of before, but had come across at our recent Reach family weekend during a talk from Orla Duncan, a psychosocial nurse who specialises in supporting children with a physical difference and their families.

Orla had talked about how people with a difference of any kind, and parents of children with a difference of any kind, can sometimes become hypervigilant when they are out and about in public. She explained how they can feel so insecure or vulnerable that their subconscious is almost looking for that stare or listening for that comment.

She talked of an experiment involving actors with large fake scars drawn across their faces. The actors looked in the mirror at their difference before heading out into the busy streets. However, just before they stepped out, a make up artist came forward under the pretence of touching up their makeup, instead they actually removed it completely. Upon their return, despite looking entirely “normal”, every single actor reported feeling like they were being stared at and that they were being judged and victimised by other people.

The end result being, of course, that because they were aware of their difference they were expecting some kind of reaction from those around them. They felt that their difference made them stand out from the crowd and it gave them a ‘me against them’ mentality. In short, they created their own reality by looking around at people, catching others’ eyes and acting on edge. People probably were staring at them, but not at all for the reason they were expecting.

I’m not for a minute suggesting that we go out all day every day and glare at unsuspecting bystanders, daring them to make a comment or even to notice Hero’s hand. We certainly don’t. There’s been plenty of occasions of late where, because her difference is so normal to us, people have looked and I’ve genuinely wondered whether she had food on her top and that’s why they were curious. I even had to lean round to check at one point.

Yet Orla certainly has a point. If she didn’t that man would have passed me by without a second glance, let alone an impulse to kill. When you get to the point where you are a second away from committing a very messy and a very public murder in full view, not only of your own child but of the victim’s as well, you’ve got to wonder whether your subconscious is perhaps a tad more wired than you give it credit for. Interestingly, it’s not something I think I had really experienced before the “Macdonald’s Incident”. Being as how we’ve encountered nothing of the sort since then, I’d like to hope that my subconscious will be able to chill and enjoy this time of genuine peace, happiness and excitement that the rest of me is feeling as our little lucky fin lets loose her sails and finds her own heading with flying colours.

IMG_0666

 

The importance of belonging

The importance of belonging

Last week we attended our first Reach Family Weekend. I’ve at last finished raving to my friends and family about what an amazing time we had, so I can now try and articulate some of my enthusiasm into a coherent blog post.

She belongs

‘Fitting in’ is one of those things that has always eluded me, and I don’t even have any outwardly obvious differences (terrible dress sense and an obsession with Disney and dinosaurs aside, of course). Consequently Hero’s sense of belonging and of fitting in has always been incredibly important to me. Being a part of the Reach community is a huge element in my grand ‘Give Hero Self Confidence’ scheme and so far so good, it would seem.

I’m always pretty confident that wherever Hero is going, be that to nursery or to a class, she’ll stand out somewhat and be easily identifiable. Partly due to the inevitably outrageous outfits I put her in and the slightly left-field name we’ve given her, but also because of her hand. Dropping her off at the Reach crèche (run by the wonderful folk from Freedom Childcare) I realised that she wasn’t necessarily going to stand out today. She was instead joining a group of children just like her, in their own unique ways. She was going to fit right in. That realisation brought mixed feelings, and I started to recognise that a part of me actually loves the fact that she’s noticeably unique. Yet there’s the other part of me too, that just wants her to fit in.

Throughout the gala dinner she managed to chat up a fair few people, and not just the middle-aged males she usually likes to charm. She’s often drawn attention when we’re out in public and I have always assumed that people were interested because of her hand. I’ve wondered if people wanted to talk to her out of a well-intentioned pity. Yet this weekend people weren’t talking to her because she was different, because this weekend she wasn’t. They were talking to her because she has a beautiful personality (slightly biased parent here, naturally) and is engaged with those around her. It has absolutely nothing to do with her little hand and it’s been unjust of me to assume so. She’s so much more than her missing hand, as I’ve always known, but this weekend has taught me that actually everyone else sees beyond that too and that I need a little more faith in how the world views my daughter.

IMG_1341
Trying to distract our hosts, Reach Chairman, Lee and actress Melissa Johns!

IMG_1307

We belong

We’ve only been part of what many call their ‘Reach family’ for a year. I’m often a bit of a slow-burner when it comes to feeling accepted and like I’m really part of a group or a team. I’ve been known to be attending a club or activity for years and to still not feel like I’m really one of them. Yet, at the Reach gala dinner, surrounded by hundreds of people, many of whom I don’t even know, I’d never felt more like I belonged. I was chatting with amazingly talented professionals, paralympians and actresses, only to find that they were just as curious about my daughter and me as I was about them. I was sitting alongside families from my regional branch who I already call my friends and am happily able to meet up with throughout the year. I also made new friends from completely opposite sides of the country, although in fairness, most of these happy meetings were engineered by Hero accidentally wandering under people’s tables and needing to be retreived!

I recall vividly the days before we sent off our application to become Reach members. We were still pregnant and not really in a good place emotionally at all. I remember thinking how unlucky I was that the rest of my life was going to be tied to this charity, it felt unfair. Isn’t life funny; when some of your biggest misgivings can turn out to be your biggest blessings. I only wish that everyone had a community like this to be a part of. Somewhere they can feel confident, somewhere they can ask questions and somewhere they can just be welcomed with open arms and fit right in, regardless of background, outlook or feelings.

Inspiration

The first half of the day was spent in a conference hall, enjoying a number of different speakers. We heard from a hugely experienced plastic surgeon, Dr Ruth Lester, who’s helped us to understand the thought processes behind the appointments Hero’s had. I’ve mentioned before how disappointing we found Hero’s first meeting with the surgeon. While she couldn’t make up for his rudeness, Dr Lester did make sense of the outcome for us. We also met Sue Kent, a incredible lady who overcame intense prejudice to train as one of the first people in the world to be a qualified sports masseuse, using only her feet and who, despite everything, had the best sense of humour!

We also met with Orla Duncan,  a psychosocial nurse who specialises in supporting children with a physical difference and their families. Orla gave parents tips on building  children’s self esteem, which played right into the hands of ‘Operation Give Hero Self Confidence’. We heard from two different prosthetic makers, including the Team Umlimbited (of Shed of the Year fame) as well as Joel Gibbard from Open Bionics, who’re making the most astounding prosthetic hands at the opposite end of the spectrum. According to Joel from Open Bionics, there’s a very real possibility that by the time she’s twenty years’ old, Hero could have a bionic hand that functions entirely as a human hand would. If there was ever a time to be born with a limb difference, now would be it. Early enough to be able to watch this astounding technology develop, but young enough to still benefit from it in the future. I look forward to the day when Hero can show off her phenomenal prosthetic hand to the envy of her peers!

Hearing from Paralympains and all-round lovely people, Hollie Arnold and Claire Cashmore, was wonderful. They were honest about the bad times, something I believe is essential to help people to understand and to accept their own emotional ups and downs in parenting a child with a difference or in living with a difference themselves. They didn’t shy away from mentioning the bullies, something I was incredibly grateful to them for. The idea of their children being bullied is a fear most parents share, even more so if your child has any kind of difference. We all know it happens, so why pretend that it doesn’t? But what came out of both women’s stories was the sheer, beautiful confidence they now have. They were rightfully proud of their achievements and they certainly aren’t stopping there. Being honest about the bad times they’d been through simply  made their achievements all the more striking.

IMG_1292
Hollie Arnold – gold medalist, three-times world champion and all-round lovely person!

Having the opportunity to chat with them both afterwards, mostly on the dance floor in the evening, was brilliant; it made them real. Yes their achievements are extraordinary, but they are human none the less. I know that not everyone can be a Paralympian, and that might not be a path Hero even wants to contemplate (certainly not if she inherits her mother’s woeful sporting ability anyway!) but they proved that it is a goal that can be attained if she puts her mind to it. Hollie mentioned how she played almost every and any sport available to her at school, including hockey. I’ve mentioned before my husband’s love for hockey and so it was great to have the opportunity to ask Hollie how she got on and to ask how she adapted her arm to enable her to play. She laughed and told us that she’d never used an adaptation for hockey, she’d just grabbed the stick and smacked the ball. She didn’t care at all and if I take one thing away from the talks it’ll be that we probably shouldn’t care either!

IMG_3036
Dancing with the stars: Claire Cashmore and Hollie Arnold

We were also lucky enough to meet a stunning young lady called Melissa Johns, who was most recently seen acting in Coronation Street. Melissa’s confidence was phenomenal and she looked amazing up on the stage, so I was astounded to find out how hard-earned that confidence was and how she’d only very recently achieved it. People like Melissa, putting themselves out there and braving the gauntlet of rejection and prejudice, means that Hero will enjoy seeing role models and people just like her on the TV. I often go on about representation at Though She Be But Little, it’s something I’d never given much thought to before I’d had Hero. But my daughter and any child with a difference, be that a disability, their gender or their skin colour, should be able to see themselves out there in books and in the media. They shouldn’t have to feel like they don’t fit the mould. People like Hollie, Claire, Melissa, Sue and those like them, are all striving to achieve their own goals and in so doing are paving the way for the generations who’ll come after them and have their blazing trails to look up to and follow if they wish.

IMG_3031
Meeting the talented Melissa Johns on the dance floor

I should probably start wrapping things up here, but trust me, I could go on. This weekend we found solutions to problems we didn’t even know we might have, we found
out that Hero is blissfully normal within our Reach family and that we, and everything we feel, is normal too. We were star struck to meet such talented individuals and people from all walks of life, all blooming with so much hard-earned confidence. These young people, including a beautiful and articulate one-handed trainee teacher, the professionals, the sports stars and the actresses, are all Hero’s role models. They’re her peers and they’re people I’d be thrilled for her to look up to and to emulate. I can’t think of a better community to inspire, motivate and support our own little superhero as she grows.

 

 

 

 

 

Simply a matter of perception

Simply a matter of perception

There’s a huge difference between “there’s nothing we can do” and “there’s nothing she needs”. As I touched upon in my last post, the difference between the two phrases might not be all that profound, the end result is the same after all. Yet I’ve come to discover that while there might be only a word or two different, there’s a massive disparity in their meaning.

Nowhere was this more obvious to me that at our first appointment at the limb centre this week. The whole experience was entirely different from previous appointments we’d had elsewhere, from the moment we stepped into the building to the moment we left. And it was different for the better.

At previous appointments in numerous different hospitals, Hero has always been different. We’ve sat in waiting rooms full of two handed people, more often than not she’s been an object of curiosity. I don’t mind that so much, nobody has been rude to us there. Yet when we grabbed a seat in the limb centre waiting room, we found ourselves opposite a little boy with a hand just like Hero’s. Perhaps she’s too young to notice the similarities just yet, but I was very aware of it, and so was he. The little boy immediately engaged with her, he started making faces (using his hand and his little arm to pull a wide smile) and she started following him around the room, enraptured. It was such a beautiful but simple moment, I hope it was the same for the little boy’s mum too, to see our kids playing and comparing with no need for questions or staring.

22689952_10159566178950387_669907317_o
Having a blast in the waiting room!

In the appointment room it was pretty toy-tastic. Hero was very clearly comfortable in there and wasted no time in cruising up and down the walking bars and even admiring the brightly coloured artwork on the walls. She absolutely loved meeting her two doctors, Hero is a big fan of adults and children (babies, not so much). They were so incredibly positive about Hero and particularly about her ability with her little hand. She chose a good moment to demonstrate her Duplo skills; how she carefully positions one block between her little hand and her chest before clipping on a second block with her free hand.

22689919_10159566176865387_953611682_o
Admiring the artwork

The appointment was only ever a meet and greet and I was neither surprised or dissapointed to be told that we don’t need to see them again for another year. Because this time, exactly as I’d hoped, there was no “well, there’s nothing we can do”. They’d not come into this appointment with a “how can we fix this” attitude. Instead they agreed wholeheartedly with me that trying Hero out with any kind of prosthetic would really hamper her development at this stage. And why bother when she’s already finding her own ways of using her hand so effectively?

Previous consultants have talked about how her little fingers wouldn’t ever have any functionality. About how she wasn’t a good candidate for toe-to-hand surgery and about how there was very little to be done to improve her hand’s function. At the limb centre, however,  it was simply a wonderful appraisal of all of the ability she does have in her little hand, with n’er a mention of what she doesn’t.

22662396_10159566179915387_678578097_o
Showing off her skills for the consultants.

As the Reach tagline says; it’s ability not disability that matters and I couldn’t help but feel that the folks at the limb centre, be they staff or visitors, really and truly understood that and wanted to ensure that everyone else did too.

22689886_10159566177520387_644777269_o
Hero has left the building. Thank you very much.

Myth busting: Last year’s fears

Myth busting: Last year’s fears

I thought that Hero’s first birthday would mark some kind of huge emotional landmark for us, at least where her little hand was concerned, but I never had that lightning bolt moment. However, now that she’s fourteen months old something feels like it’s finally falling into place.

There have been many points over the past year or so where I’ve thought that I was totally at peace with her limb difference. There were times when I thought it didn’t bother me any more, only to find the odd little spanner being flung into the works, be that unsavoury characters at a road side restaurant or an insensitive comment thrown our way. Now I’ve realised that emotions aren’t a one-way street, where all you can possibly do is go forward. Mostly, you’re headed in the right direction, but every so often you might hit a bit of a pothole. Happily for us right now, we’re cruising in the right direction on a currently smooth and empty road.

IMG_3619
The king of the swingers, oh, the jungle VIP!

A change of perspective

This time last year I simultaneously craved and loathed medical appointments for Hero. I craved them because I still wanted something to be done for her. I don’t know what I hoped that ‘something’ would be, but with all the appointments we were having surely there was a specialist somewhere that could “fix” this. We were referred to both orthopaedic and to plastic surgeons within the first three months of her life, one of them must surely have the answer. When each appointment letter came through, none them requested by us, my expectations would start to rise, even if I didn’t realise it at the time. I would be snappy and waspish in the waiting rooms and I would march into the meetings like I was preparing to do battle. Yet, each time they said there was simply nothing to be done.

I knew there was nothing to be done. Short of reversing time and repairing whatever kink in the development stages resulted in her missing hand, there is simply nothing to be done. I knew that. Yet it still angered me each time we were told the same. I was frustrated at having numerous referrals, which built up a sense of tension and expectation, only to be let down each time and reminded again that there was nothing to be done.

A year later and we’ve been told there is another referral in the pipeline sending us back to the gloriously insensitive plastic surgeon who had been so frustrating in the early days. A year ago I would have clung to that appointment, unconsciously hoping still for that something unknown. Yet this time I just grimaced at the letter and wondered why on earth we are heading back down that path. Only this time my reaction wasn’t bourn from a sense of pointlessness, a sense of ‘there’s nothing they can do’. This time my disinterest is because there’s nothing they should do. This tenacious, problem-solving and downright clever kid, just doesn’t need anything. She doesn’t need help. She doesn’t need adaptations. She doesn’t need to be fixed because nothing is broken.

I’ve had a year now of watching her smash through her milestones, of finding out her own ways of getting things done. You can’t watch Hero in action and genuinely think there is a problem to be fixed.  She’ll spend over twenty minutes trying to clip a harness together, never giving up or getting angry. She’ll keep working those Duplo blocks until she can hold them in just the right position with her little arm to be able to clip them together before pulling them apart again. This kid is walking everywhere and carrying things as she goes, something in each arm.

IMG_3611
All hail the Duplo Master!

This girl doesn’t need to see a plastic surgeon and, at last, her mother doesn’t need her to either. Realising this was the landmark moment I’d been waiting for. Here is that moment: She’s ok and I think I’m ok too.

The new normal

Meanwhile, Hero also has her first appointment at our local limb centre this week. Unlike the trips to surgeons that she doesn’t need, I’m genuinely excited about this one. Not because I’m expecting anything more than a meet and greet, nor because I want anything more than that. I’m excited because this isn’t going to be like the other appointments. Annual visits to the limb centre will be our new normal. These are the people who will be making sure her little hand is growing as it should be. These are the people who will craft her first bike adaptation to stop her messing up her back by leaning on different length arms. These are the people who, a few years from now, might help her find a way of playing the violin with her dad and of joining us both on the archery field.  These are the people who will help her to do whatever she wants to do, on her terms and when she wants it, with no promises or expectations of changing her. In short, these are the appointments we want, the appointments we didn’t even know we needed a year ago. These appointments are all about acceptance and embracing things as the normal, the everyday and the downright amazing.

Monkeying around

There was another landmark moment this week that took me all the way back to one of my first blog posts: ‘Trying to find a little peace of mind’. In that post I was frightened as hell about this journey we were on. I listed a number of thoughts that, at the time, caused me a lot of heartache. I’d like to reach back through time and tell myself how it’s actually going to be. So far none of those fears have been realised. Not one. Not even a little bit. Of course, we’ve had a few difficult bumps in the road, and I’m sure we’ll have more to come, but that is all they are: bumps. They’re no longer insurmountable mountains, they’re no longer blocking our way.

One of the things I worried about back then was that we wouldn’t be able to both hold  her hands at the same time, that we’d not be able to stand side by side and swing her up into the air between us. I just couldn’t see it then, as ridiculous and laughable as it sounds to me now. And as if to prove a point (long may she continue to do so!) Hero was having an absolute blast this weekend being swung high into the air between her dad and her gramps, loving every single moment and not even knowing that she was defying all of our fears.

22429170_10159548363955387_1693907016_o
#LuckyFinsRock #ItsAbilityNotDisabilityThatMatters