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.

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

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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.

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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!

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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.

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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.

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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.

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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.

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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.

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Hero has left the building. Thank you very much.

Making Some Noise about the big things the little charities do

Making Some Noise about the big things the little charities do

This week Hero, and her team of spokesparents, was invited to the Cardiff headquarters and studio of Capital FM to talk about one of our favourite charities, Reach. Breakfast show presenter Polly and producer Andy welcomed our little Nemo as well as our friends and fellow Reach family into the studio as part of Global’s Make Some Noise charity day on Friday 6th October, of which Reach is a very grateful beneficiary.

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In the Capital FM studio with breakfast show presenter, Polly

Make Some Noise aims to raise awareness and much needed funds for smaller and less represented charities and, let’s face it, Reach isn’t exactly a household name. Why would it be, when only one in 32,000 babies are born with Hero’s condition? I certainly had never heard of it, or even knew that it was needed, before Hero burst into our lives. Yet need it we have, and it took an unexpected radio interview to make me stop and appreciate exactly what charities and non profits, like Reach and the USA’s Lucky Fin Project, have done for us over the past two years.

During the interview we were asked where we would be now if we didn’t have Reach and I had to pause and think for a moment. The impact Reach has had on our lives is subtle, almost like a soundtrack playing in the background, but it’s no less profound for that. Reach doesn’t jump and shout and make itself known, its just there and its presence is almost taken for granted, like a beloved family member.

Reassurance:

We discovered Reach, through the power of Google, on the very day we found out about Hero’s limb difference. In our welcome pack we received a book full of personal accounts of every stage of parenting a limb-different baby, from birth through to adulthood. This booklet, before I’d even met any other members or communicated above and beyond a simple application form, was my first little bit of validation. It was a written reassurance that it was ok to feel worried about our baby’s future but that, despite these worries, she would be absolutely fine. More than that; she would thrive!

Normality

Before our 20-week scan I had never come across anybody with a limb difference. My great grandfather lost his hand in a nasty farming accident, but sadly I never got to hear the tale in person. I’m a teacher and have met hundreds of different children over the five years I’ve been in education, and yet I’d never seen a child with a limb difference. Even now I’m aware of it, I’ve still not come across anyone outside of Reach or the Lucky Fin Project with a similar difference. I don’t want Hero growing up with a sense of isolation or of not fitting in, with the sense of being the only one. Thanks to these charities she can be totally and utterly normal, she’s one of a select club. Don’t get me wrong; to me she’ll always be unique and all the more amazing for it. But for her, when she wants to fit in and when she doesn’t want to stand out anymore, she doesn’t have to. Which, if Reach offered us nothing else, would still be enough.

A map book for the future

Reach, its website and its community, offers new parents of limb-different kids something of a road map. A heads up on what to expect and what really isn’t worth worrying about. One of the highlights in September was seeing parents sharing photos of Reach kids on their first day at school. To see those beaming faces, heading off to school with nothing but excitement (and maybe a few nerves) was wonderful for us who have all that to come and for whom school still seems like a big and a terrifying milestone. If we have any questions about hobbies, activities or even about driving (as far away as it is, the idea of Hero as a grown up is currently a banned subject in our household), Reach offers a wealth of experience and information on almost anything that might affect our children’s lives.

Adaptations

When we found out about Hero’s hand my husband was particularly upset, for many of the reasons I’ve blogged about before, but also because he’d always dreamed of sharing his hobbies of hockey and violin playing with his children. Now I know that kids don’t always do what we might like them to and even with two hands, Hero might have scoffed at the idea of trying either of those things. But to feel like he didn’t even have the opportunity to try was pretty hard. Enter Reach and all the Reach kids who have come before us and who have played their way to success both in the music room and on the sports field. Reach has shown us that anything Hero wants to do is possible. It might not look the same as when a two handed person does it, but it’s still a possibility. Assuming that’s what she’d like to do of course. If she’s anything like her mother she’ll prefer digging about in the dirt and wading in rivers to actually improving any skills she might have!

Community

For me, and I think for Hero too in the future, the Reach community is worth its weight in gold. We meet up with other local families two or three times a year and regularly keep in touch online. For the parents it’s an opportunity to touch base with others, to field any questions or concerns to a group of people who totally and utterly get it. Even if they don’t feel the same way you do, they understand it. You won’t find anyone else who gets it quite like your Reach friends do. They’ll reassure you when you need a lift, they’ll commiserate when you’ve had a knock and they’ll tell you gently that you’re overreacting when the tiny little things make you snap. And for Hero, they’re a group of people around whom she’s no longer the odd one out. Around whom she won’t ever feel the need to hide. These will be kids who she’ll grow up alongside will be her allies, her friends and her role models. She’ll be able to rant with them and compare stories and, like their parents, they will just get it.

I distinctly remember a moment of despair, not long after we’d found out about Hero’s hand, at the idea that our lives would be intrinsically tied with this charity forever. What an idiot I was. We probably will be involved with Reach for the rest of our lives, but that is going to be no hardship at all. That worry, along with all the others about Hero’s ability and wellbeing, has been trashed over the last year. I am incredibly lucky and proud to be a part of the Reach family and only wish everyone had a community like this with whom they could completely and utterly fit in and belong.

So I wanted to say a big thank you to Capital FM, not only for showing us around a radio studio for the first time, but also for making some noise about the little charities like ours. For raising awareness, among the general public but also in myself, of the subtle but dramatic job that Reach (and charities like Reach) do and the huge but often-overlooked impact they have in families’ lives.

Make Some Noise

You can hear snippets of our interview and learn more about Reach and Make Some Noise by tuning it to Capital FM South Wales 97.4 – 103.2 fm or visiting www.capitalfm.com/southwales/radio/ for the breakfast show tomorrow (Friday, 6th October 2017) between 6am and 10am GMT.

Make Some Noise in the comments section below: How have little charities impacted on your lives?

NemoBaby
#Itsabilitynotdisabilitythatmatters #LuckyFinsRock #Tenfingersareoverrated

 

 

Kimberley Reaches the Finish Line!

What a day!

Kimberley ran @TheBritish10k in London today, non stop, coming in an bloomin’ brilliant 6177 out of 11257! All her hard work has raised a staggering £460 online already!

Amazing Job Kimberly and a huge well done to you and your support crew on the day!

‪#‎itsabilitynotdisabilitythatmatters

I can’t thank Kimberley enough for what she’s done this weekend and over the past months. What a HUGE amount of money to raise for such an invaluable charity to those affected by upper limb diffabilities!

@ReachCharity ‪#‎Runthecapital‬

Can we bump it up to the £500 milestone? Thank you so much to everyone who has generously donated, some multiple times, already!

https://www.justgiving.com/fundraising/reachforthefinishline

 

Reach For the Finish Line

A couple of weeks after our 20-week scan our welcome pack from Reach – The Association for Children with Upper Limb Deficiency arrived.

I leafed through a few pages before bursting into tears. At the time I hadn’t quite reached acceptance. The idea that I would likely be affiliated with this charity for the rest of my life was terrifying. I’ve been lucky enough throughout my life to have never needed a charity before and my first experience was shaping up to be a life-long one.

Since then, after countless members selflessly reached out to me in emails and in messages offering reassurance, a few words of support, an avenue of communication, I’ve realised how utterly wrong I was.

I couldn’t be prouder and happier to be part of the Reach community, albeit as a total newbie to the fold. I can only hope that in years to come I’ll be able to reach out to new members in the way others did for me. Such a simple gesture; such a massive impact.

Time to pay it all forward.

Our own Reach Baby isn’t with us yet and isn’t due to make her grand entrance for another 9 weeks, but I don’t think it’s ever too soon to say thank you. In my increasingly ungainly pregnant state, my similarity to the Rudstone Venus becoming ever more uncanny (thank you to my darling Ben for the comparison), I didn’t think I would be much cop at running the London Vitality 10k on the 10th July myself.

I put a post out on Facebook wondering if anyone else out there fancied the challenge of the 10k to raise funds for Reach. My hockey captain from Ross Ladies, Kim, jumped at the chance. We’ve not known each other for all that long (I only joined the club last Autumn) and her support, motivation and openness has already been amazing.

 

 

If you’d like to support Kim (and me in my armchair role!) in the name of our Reach Baby and the other amazing kids like her, please visit out Just Giving page:  www.justgiving.com/fundraising/reachforthefinishline.

You can also track Kim’s progress on our Facebook page: www.facebook.com/thoughshebebutlittle2016