UK Blog Awards 2017

UK Blog Awards 2017

We are super excited to say that Thoughshebebutlittle2016 has been entered into the UK Blog Awards 2017 and the public vote is now open!

Whether you’ve read, enjoyed, or simply spared a cursory glance at Hero’s journey on Thoughshebebutlittle2016, please consider taking the time to vote for us and share the link. 

To vote follow the link below and scroll down to add your name and email before hitting submit. Simples!

 

Vote here for Thoughshebebutlittle2016!

Thank you so much for all of your support so far on this bloomin’ wonderful journey!

Little kisses for a little hand

Little kisses for a little hand

Before Hero was born I was often told that she wouldn’t even know her right hand was missing. That she wouldn’t know any different. I’m not entirely sure that I ever fully believed that. Yet there was a part of me that felt that she couldn’t miss what she’d never had, right?

But as she storms past the three-month mark (time, slow yourself, please!) it’s abundantly clear that she does know something is missing, on a subconscious level at least.

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Feeling old!

Last week, seemingly over night, she learnt to reach out and grab at toys dangling in front of her. One day she was batting aimlessly, and often missing, the next she was reaching out with calculated aim and grabbing hold. All the while this little miracle was unfolding before my eyes her lucky fin remained resolutely tucked against her side, as if she’d just buried her hand in her pocket. It was as if she knew that her right hand couldn’t grab. As if there was no point to using it at all.

As is the wont of new mums, I panicked. Surely, as so many people had told me, she shouldn’t be using it any differently. She shouldn’t know, right? The wonderful Reach community came to my aid, as they always have, and other parents reassured me that their children too went through a time of not using their lucky fins as infants. They reassured me that a time suddenly came when their little one figured out that, while they couldn’t use their lucky fin in quite the same way, they still could use it and to great effect.

So I guess I need to wait and see, to relax back and let her do things in her own way and in her own sweet time. She’ll find her lucky fin sooner or later and there’ll be no stopping her when she does I’m sure!

In other news, Hero had her first experience of the cinema this week. Thank you so much to Odeon who put on a baby-friendly screening of the latest films each week. As dumb as it might sound, the cinema is one of the only things I miss from my pre-baby life, so learning that I could simply take Hero along too was the icing on the cake!

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Movie time.

Hero was a trooper all the way through! She watched the first fifteen minutes of A Street Cat Named Bob with her wide bush-baby eyes, then had a nap on my shoulder through most of the emotional turmoil. We spent the last ten minutes standing up by the door to watch the ending, as she’d had enough of sitting still by that point, but all in all it was a resounding success and I can’t wait to see the all-important Fantastic Beasts and Where to Find Them in a couple of weeks!

As the other cinema goers were leaving, an elderly lady who didn’t speak much English passed us. She stopped to chat to Hero in Japanese for a bit, telling me in broken English that Hero had been really good throughout the film and how sweet she was. The lady reached out to take Hero’s hand and then hesitated a moment when she saw it was missing. The lady’s face then broke into the biggest smile and she bent down to give the lucky fin two tiny kisses. Then she looked Hero in the eye and told her she was beautiful.

I’m not sure if it was the uplifting ending to the film or if it was simply being privy to such a special moment between my daughter and a complete stranger, but I left the cinema with tears in my eyes and a heart like a helium balloon.

The lucky fin, the stitch and the wardrobe

The lucky fin, the stitch and the wardrobe

Our lucky fin baby is 11 weeks today. Where on earth has that time gone? I can’t actually remember what I filled it with. She’s already babbling away incessantly and putting those building blocks in place ready to roll over, if only she could get her lucky fin out of the way. Despite all these amazing changes she’s undergone in such a short (yet infinite) amount of time, I can’t quite remember when the snuggly newborn ceased to be and the bright-eyed and energetic infant took her place.

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She’s already displaying her mother’s tendency towards chronic indecisiveness, however. She cannot work out which is better, to suck on her lucky fin, or to suck on her left thumb. I have to confess, as a recovering thumb-sucker myself, I was hoping that she’d never notice that tempting little digit. Not only because I often had blisters on the top of my thumb where I would rest it permanently on my lower teeth, but also because I fear she’d not be able to do much else while sucking it with her right hand missing. It looks as though I’ll simultaneously win and lose in that department as, throughout the day, she switches from one to the other and back again depending on which is the most accessible.

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At such a young age, accessibility isn’t something I’d given much thought to, particularly in regards to her clothing. I know in the future that things such as shoelaces, buttons and zips may prove to be tricky customers for her, but surely baby grows don’t need any adaptations, she isn’t going to be dressing herself in them after all. Plus, wouldn’t I want to use them again for baby Number 2? Yet as the weather starts to get a bit cooler and her sleeves are getting a bit thicker, just rolling them back has become more of an issue. With a big wad of material around her wrist she couldn’t manoeuvre her little hand in order to get it into her mouth, resulting in tears and frustration.

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The dreaded roll-back

And so I dug out my sewing kit and resigned myself to adapting just the essentials of her wardrobe. It took a fair few failed attempts, a few 1970s-style flared sleeves, before I worked out how to taper them in at the wrist and not make it look as though a child had done it. Without a hand to stop the material falling over her digits, she needed the sleeve to fit snuggly around her little arm to stop it swamping her or providing a nice little trap to get her arm caught in.

Yet it was only after I’d dressed her in her first adapted baby grow that I realised how right it felt. How I should have done this weeks ago. Each stitch felt like another tiny piece of the acceptance puzzle falling into place. Each stitch meant that she finally had clothes that were entirely her own. Her clothes no longer belonged to some imaginary sibling that didn’t even exist yet. I have been telling her since birth that she is perfect the way she is. Therefore, if she is so perfect, why should she wear clothes that don’t even fit, clothes that swamp her little arm and hide it from view, or prevent her from using it in every way she can?

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Following on from this epiphany there’s no stopping me now. After initially planning to just adapt a select few of her generic babygrows, every single item has now fallen prey to my sewing kit. From the designer dresses bought for her by family, to the dinosaur jumpers and baby grows I force her into each day. Everything she owns is going to be hers entirely and fully. Unexpectedly, a result of finally making these changes is that her little hand feels all the less obvious for it. Every time I dressed her, the ritual of rolling back the sleeve drew attention to her difference. So now, with no daily wardrobe adaptations to make, I don’t see that my baby girl is different in any way. When I look at her now, rocking her very own wardrobe, I see no difference. I see a whole and a beautiful young lady wearing clothes that are entirely her own.

This is my Lucky Fin baby. She is a perfect fit for this world. Now her clothes are as perfect a fit for her as she is for the world. Maybe, some day down the line, instead of handing her clothes down to a sibling, she’ll be handing them on to the next newest member of the Lucky Fin community who shares a diffability similar to her own.

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Out of the Mouths of Babes

Out of the Mouths of Babes

Kids can be so cruel.

As a primary teacher at an all-girls school it’s a phrase I hear often. Sure, kids can be cruel sometimes. But in my experience more often they are honest and open and full of wide-eyed care.

Despite this I was still a bit nervous when I took Hero into school to meet my students last week. I’d started my maternity leave early, half way through the summer term, so my girls knew that things hadn’t been entirely straightforward with the pregnancy. I was really keen for them to see that everything was all ok.

I’d decided not to prepare the girls before I took Hero in to meet them. Their gasps of delight and joy at seeing her were spectacular. Their excitement was punctuated after a few moments by the startled question: “What’s happened to her hand?”

And there it was, the elephant in the room evaporated instantly in a poof of smoke. The elephant that lingers so often when adults are taken by surprise. After the first girls asked, the others started to notice her lucky fin too and repeated the question.

I explained that we’d found out about her paw while she was still in my tummy and that sometimes things just don’t develop the way we’d expect them to. That’s life, that’s just nature.

“Will it grow?”

“Are those fingers?”

“Does it move?”

It was so wonderfully refreshing to be asked questions and to answer without any awkwardness. As soon as they realised that it was all ok; that I was OK and that Hero was OK, their attitude to her lucky fin changed from curiosity and concern to wonder and joy.

“Can I touch it?”

“It’s so cute!”

“I love it; it looks like a teddy bear’s paw!”

“She has teeny tiny nails! She’ll be able to paint them when she’s older!”

One of my girls, who is just nine years old, looked up at me as she held onto Hero’s lucky fin and said with such honesty and integrity: “She is such a special little girl! A real one of a kind.”

Often the difference between children and adults is that children aren’t afraid to ask. And if you’re not afraid to ask then I’m not afraid to answer. Of course I can’t speak for any other parents with a limb-different child, or for the children themselves, but for me I welcome the questions. There’s no such thing as a silly question. Once they’re asked, once we’ve said farewell to that elephant, we can get on to talking about other things.

Being different is nothing to be ashamed of and in approaching differences with curiosity we can open our mind to a whole new world. My girls showed me that last week as they sent Hero and I on our way, our hearts bursting with happiness.

 

Learning a Limb-Different Language

Learning a Limb-Different Language

Hero is officially one month old today. Where on earth has that time gone? It feels like she arrived with us only this morning and yet somehow she’s been a part of our lives forever.

The first four weeks were bliss; a picturesque honeymoon. I could think of nothing better than looking at her, holding her, showing her off to all and sundry. We watched her slip seamlessly into our busy and chaotic lives, bringing an element of calm and stillness, and yet flinging everything on its head at the same time.

Such confident honeymooners were we that we’ve taken the poor girl camping at medieval events twice. Despite initially bringing on some acute anxiety episodes, both trips did wonders for my parenting confidence. Perhaps a little over confident, my Health Visitor seemed to suggest, after I told her I’d been on a bouncy castle three-weeks after giving birth.

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In these blissfully never-ending early days, that paradoxically pass all too quickly, Hero is all sleepy eyes, beautiful stretches, arm-waving reflexes and a tumble of strange noises designed specifically to keep Mum awake at night.

What Hero isn’t, is disabled. She has barely any control over her left hand yet, so the idea that she might notice she is missing her right is laughable. But that doesn’t mean that, as time goes on and that reality steals in, that I’m not aware of it. I find myself gazing at her little hand, wondering what the future will hold for her, watching the post-box for the referral letter to the plastic surgery department.

Parenting vs Possessing

We don’t fully understand why we’re being referred to plastics (as wonderful as the care she received was, the communication in the neonatal unit was patchy). Are they thinking that those little fingers might need to be removed? The tiny thumb certainly catches on the sleeve of her grows as we dress her, its delicate attachment so fragile. But if removing them is the route they are planning to tread, then they would have to give me a very solid reason for doing so. Before I gave birth I naively thought that being a parent would be like ‘owning’ a child. Surely I had a right to make decisions for her in her inability to do so. Yet now she’s here, utterly dependent on me in a way nothing has ever been or perhaps ever will be again, I can’t escape that sense that I am just the caretaker of her little body. I’m caring for it on borrowed time, a foster carer if you will, until such a time as it becomes hers entirely, to do with as she will – be that tattoos, piercings or plastic surgery on her little hand. There’s no way I could consent to removing those beautiful, characterful little fingers for anything less than a sound medical reason. If it’s suggested to us that the little pad of muscle would be more ‘useful’ without them, if there was a risk of infection or injury, we’d have to consider the options carefully. I couldn’t bare the thought of one day, years from now, Hero turning to me and asking why she had tiny fingers when she was born and why she doesn’t have them now. When and if that question comes I’d have to have a damn strong answer, anything less than that would be an utter betrayal of her inherent trust in us as her parents. And how, after all, could you condone the removal of things so sweetly beautiful in the name of aesthetics?

 Where’s Our Baby Babel Fish?

Living with a child who’s limb-different is a bit like learning a new language. Hell, it’s like coining a new language all your own. Words that used to be utterly innocuous to you now raise your blood and spark your emotions in the most inflammatory way.

Stump. Stump is a word that used to represent the base of a felled tree. Now it’s a red rag to a bull. Approaching Hero’s little hand from opposite ends of the spectrum, as we have all the way through, my husband often referred to her hand as a ‘stump’ in the early days. It was a way of distancing himself from the emotion of it, a way of desensitising. Yet to me, each time I heard it was a slap in the face. The word screams at me of incompleteness, of imperfection, of lacking. In the tumultuous hours and days after giving birth the word would instil in me a primal rage the like of which I don’t think I’ve ever felt before. How dare anyone refer to my child as anything less that completely and utterly perfect in her own way?

Unfortunately, the medical lingo for a new born baby’s cut cord also seems to be ‘stump’. There were numerous occasions, as I hovered protectively over her incubator while the consultants surrounded her clipboards in hand, where they callously threw around the word ‘stump’ as if I wasn’t even there. They might as well have been calling my baby a ‘cripple’ for all the ferocity of my reaction. It was only after one of the poor consultants gave me a slightly disconcerted look and told me they were discussing baby’s cord, that I realised they were not actually the politically incorrect vultures I took them for. Yet even now the word, in any context gives me a little twitch, my metaphorical hackles rising ready to defend my child to the hilt.

Then we come to the conundrum of what we call her missing hand. It’s not a hand after all, no matter which way we look at it. Looking at those painfully fragile little digits I could never quite bring myself to call them ‘nubbins’, yet again with no bones or muscle to speak of, how can we call them fingers? Last week Hero’s great granny called them ‘buttons’, a word I find myself much preferring to ‘nubbins’. Time will tell if the word sticks.

So, as we trundle through our fifth week of parenthood, grappling with our own personal philosophies and approaches to every day parenting joys, like feeding and sleeping, we also find ourselves trying to navigate a world of new words, stepping carefully so that we don’t squash each other’s toes.

At the moment we’re a long way from fluent and I expect we’ll remain so until the little one comes into her own and gives us a helping hand with this strange new language.

 

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Welcome to the World Little One

Welcome to the World Little One

After of months of acute anxiety, pre-natal depression and insomnia, Hero Gwenhwyfar was born on 5th August, and all of my worries literally melted away.

After emerging from my initial Darth Vader-impression-laden, drug-induced, haze I couldn’t help but smile. It was all over, everything I’d been worried about; all of it happened. It was the total and utter opposite of my impeccably detailed birth plan, yet none of it mattered. Not even slightly; it was all ok.

After inhaling and swallowing her own poop on the way out, Hero was whipped away from us within moments and taken up to intensive care on the neonatal unit, where she would spend the next six days receiving the best care possible while I recovered and pined for her on the ward above.

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I’d been secretly worried during pregnancy that the first thing I would want to look at when she was born was her hand. Parents at Reach assured me that that wouldn’t be the case, but secretly I doubted them. However, when she was placed in my arms, hooked up to a myriad of drips and monitors, all I could see was her absolutely perfect face. Her perfectly squished nose. Her perfectly fluttering eyelids. Her perfectly imperfect hand was the last thing I turned to.

Her hand was perfect. She has the ‘nubbins’ I was so worried she would. And despite all my fretting, all my stewing, I love each and every one of them. Since escaping the hospital, and the absolutely faultless NHS care we all received, there’s been the odd hesitation or double-take when people have met her. Each time it’s taken me a couple of moments to realise what they’re double-taking at – all I see when I look at her is perfection and I forget that others might see something else.

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There have been tears. I’m a hormonal first-time mum with a newborn, of course there have been tears. But in the 9-days since she arrived in our world I’ve only cried once for her missing hand. As I’d put my fingers against her she had tried to curl her little paw around one of them. She was trying to hold onto my finger, but there was nothing to hold on with. So yeah, there have been some tears, but not nearly as many as I was expecting. Now she’s arrived I see clearly; my girl isn’t disabled at all. She’s differently-abled and that’s something for her to be fiercely proud of.

And unexpected positive of her dramatic arrival was that the Paediatrician needed to X-ray her lungs. While she did so she X-rayed Hero’s little arm and her spine. They ruled out, once and for all, the chance of her diffability being a result of genetic issues. They ruled out, in short, anything more serious being wrong, the very worst-case they’d warned us about as they floated the idea of a termination after our 20-week scan. After that it was difficult to worry much about her at all. She was in the best of hands, and her rosy cheeks told us she was in the best of health, despite a little meconium on the lungs! Far from worrying about her, every time I saw her I was more confident of her health. After months of being told she’d be tiny, she’d be weak, she might even be seriously ill, I found it was almost impossible to worry overly about her when she had proved all of those fears wrong even in the first moments of her life.

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What’s in a name?

Another pre-birth worry, which has so far amounted to nothing, was about her name. Hero Gwenhwyfar.

We picked out the name Hero when I was just 16 weeks pregnant. We’d bandied about so many possibilities for her name, but after seeing Shakespeare’s Much Ado About Nothing for the first time, the name Hero just stuck. It seemed to cover everything we wanted it to, it was feminine, yet strong. It was Shakespearean, yet classical. In short, it was perfect.

Then we’d found out about her hand. I panicked. Obviously we couldn’t name her Hero any more; people would think we’d named her that because she was disabled, because she was our “Hero”. When I voiced this concern to Ben he dismissed my worries out of hand.

“Are you going to treat her any different just because she’s missing a hand?” he asked me. Obviously my answer was a resolute no. So why then would I start by changing her name because of it? Let people think what they will. She was ‘Hero’ before she was missing her hand, and she’s ‘Hero’ now.

So with the anxiety fading away, with the depression evaporated, we are absolutely loving life with our tiny, beautiful, perfectly imperfect daughter and we can’t wait to see all the ways in which she’ll amaze us as she grows and develops over the coming months and years.

Welcome to the world little one, you could not be more welcome.

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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