Levelling up our limb-difference comfort zone

Levelling up our limb-difference comfort zone

Without even realising it, we’ve been quite happily ticking along in a comfortable little bubble where Hero’s limb difference is concerned. Actually, that’s not entirely true, I’ve written before about how I felt we were in the golden years of her childhood where her difference is concerned; about how she’s too young to even know she’s different. And yet it’s amazing how quickly you can start taking that comfort for granted and accept it as the norm.

Yet it’s often the moment that your happy boundaries are pushed and tested just a little that you become aware of your comfort zone at all. It’s the breaking, the growing and the adapting of those edges that make you appreciate their existence most.

I feel like we had a bit of a limb-difference level up a few weeks ago. If I’d written about the experience back then, all of a month ago, it would have been a very different post indeed. It would have been a lot more emotionally fraught, it would possibly have been a bit tearful. But times have already changed, and what once took me weeks, months or maybe even years to acclimatise to, now takes mere hours or days.

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The golden years

For the last year or so we’ve been blissfully unaffected by Hero’s difference. Aside from a few minor stares or comments we’ve had no negativity. She took to RugbyTots like a nerd takes to Comic Con. She might drop the ball a little more often than the others, but aside from that you would have absolutely no idea that she was at any kind of disadvantage, and it’s been that way since the very start. So there we were, Hero thriving at nursery, excelling at RugbyTots and just all-round smashing it at life.

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Then gymnastics happened.

I skipped along to toddler gymnastics way more excited than Hero, as always with these new enterprises of mine. I had added a note onto the paper work mentioning her hand, with the vague feeling that it might be useful for insurance purposes. I mentioned it briefly to the receptionist too, I always like to make new class leaders aware so we can avoid that awkward “oh!” moment when someone tries to help her with a task and realises. But when we arrived for our first session, it didn’t occur to me to say anything else.

We took our seats in the circle and took the two little wooden sticks we were offered as part of the warm up. To start off the toddlers had to tap the sticks together. No problem; Hero just clamped one of the sticks against her body with her little hand and tapped the other one against it. Check!

Then they had to roll one of the sticks along their outstretched legs. A little trickier, but still, after a bit of readjustment; no problem. No warning bells.

But then they were asked to stretch up high and tap the sticks together above their heads. The kids all leapt to their feet and duly obliged. Hero also leapt up, attentive as usual, and then just frowned a bit as she watched everyone around her doing a task that she just couldn’t adapt for this time. She brushed it off but next they were asked to tap the sticks together behind their backs and my heart dropped a peg or two. There was a little warning bell ringing in my head now.

Seeing her just stand there and watch her peers, wanting to join in and not really registering why she couldn’t was tough. I even had a moment of anger, one I’ve not had since the early days. “Really? Above their head? You get that she only has one hand right?!” I don’t expect the world to adapt to her difference, as rare as it is, but there are moments every now and again where I feel a little more inclusivity wouldn’t go a miss. After you noticed the kid that couldn’t tap them above her head, could you not have skipped the behind your back bit? But it was our first time and I suspect there was a little bit of sensitivity coming out in me, I’m not used to seeing her struggle after all.

 

Your hands don’t fit here

The warm up ended. I beamed and smiled and, as she returned the sticks back to the box, we brushed ourselves off as we skipped off to our activity. When we got there the first thing we were confronted with was two hand prints, set in contrast against the bench, showing the kids where to place their hands whilst practicing this particular move. Now I’m absolutely not complaining, but it did come a little hot on the heels of the Stick-gate Scandal and my heart lost another rung on the ladder.  Look Hero, your hands don’t fit here. I buried the feelings again, as I’m pretty expert at doing (and I know I’m not alone in that) we were really enjoying ourselves despite these little stings along the way.

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Next up was the parallel bars, at toddler height, where the kids were asked to hold onto each bar and lift their feet from the ground. I wasn’t sure how Hero was going to go about it, but I didn’t doubt that she would. As we approached, however, the helper waved a hand dismissively and told us that Hero could “just walk across instead”.

There wasn’t time to reply as we were swept along in the line but inside I felt a bit tumultuous. I was angry at her dismissal, I was frustrated at the immediate suggestion that an activity should just be avoided rather than tackled and of course, the edges of my comfort zone were wobbling dangerously in the breeze. This could have been one of those hypervigilance moments from me; she could have simply meant it because she knew it was Hero’s first session. Maybe. Perhaps. But either way, the result was the same and I have to confess to feeling a little disappointed that Hero didn’t even want to try that activity. I’d wanted so bad to prove that lady’s doubts null and void! Maybe next time!

 

Shaking the boundaries

It might not sound like it, but we actually had a wonderful time at gymnastics, despite the blips, and we’ve definitely been back since. We both had our comfort zones irrevocably shaken. Her’s physically, as she tried to master using her body in ways she’d never done before, and me emotionally as I watched her do just that. As I watched her come up against the very first thing in her life that she simply couldn’t do because of her hand. There was no working around it, no finding another way; she wasn’t about to tap those sticks above her head.

Having your comfort zone shaken, while painful at the time, is not really a bad thing. Instead your boundaries settle back into place, only this time they’re wider and you’re comfortable with just a little bit more than you were before. So when we went back the next week the handprints on the floor didn’t upset me. Mercifully, there weren’t any tapping sticks in the warm up either. Annoying really, as I had an EazyHold cuff in my pocket ready!

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When we started the warm up at the latest session she needed two hands again. Only this time they were using a rope. No problem, we simply folded the rope and hooked the loop over her little hand and held the other two ends in her left. She too could hold it high above her head this time, just like the others. Boom!

So here we are. Three sessions later and we’re pretty cool again. That didn’t take long, did it? I remember a time, when I was pregnant with Hero, when she was a little baby, when the mere sound of “if you’re happy and you know it clap your hands” would make my heart shrivel up for days on end. There was a time when I could feel sensitive about something someone said for weeks, maybe I’d even carry it around for months.

We found that first gym session tough. But we bounced back, we levelled up as a limb-difference family and we learnt that we could cope with a little more than we had before. We came marching back in and now we look for the next challenge. We puzzle out how we’ll overcome it before we get there. We watch how each activity should be done, and we have a rapid power think so that I can offer a strategy for Hero to try if, and only if, she needs it.

They had to hang onto the bar with both hands today and walk their feet up a wall. We gave our shoulders a shake, preparing for the fight, and in we dived. Hook an elbow over the bar and off we go.

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Three weeks ago we were knocked for six a little bit, for the first time in a long time. Three weeks ago is so last season! Three weeks ago we were sheltered in our wonderful world where Hero didn’t find anything particularly hard. Today we know that we can problem solve on the spot. We know that there are things out there that she will struggle with and some things that she simply won’t be able to do. But we also know that we – and she – will be ok. We know that we’ll work hard to brush those moments off and to throw ourselves into the next task without losing heart and without losing our confidence. We got this, she and I; roll on next term’s challenges.

 

 

 

 

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!

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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.

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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!

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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.

 

 

 

 

Perpetuating the myth

Perpetuating the myth

I had a bit of a parenting epiphany the other day. There I was, bobbing about in the pool for our second swimming lesson, trying to get Hero to hold onto the side. It was going well; I had lifted her good hand up and she was gripping onto the tiles like a pro. Meanwhile her little arm sat, where it often does, clamped to her side. I was just going with it, I wasn’t encouraging her to use it at all.

As she’s started to develop coordination skills, reaching out for toys (and my glasses, amongst other things!) I’ve been watching as she keeps her little arm by her side, as if it’s tucked away into an invisible pocket.

On the occasions she does use it, usually to capture something between her arms and bring it inevitably to her gaping maw, I’m sure to clap and give her plenty of praise. But do I ever really encourage her to use it?

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The Wookie reaches out…

Thinking back, still bobbing in the pool and hanging on to the side, I realised that I too seemed to favour her “good” hand. Whenever I offer her toys or something to flail about wildly, I always offer it to her left hand. All of a sudden this seems a little remiss, a little like I’m perpetuating her reluctance to use her right arm.

Her right arm is the furthest thing from useless. So why then, as I stood in the pool with her frilly swim-suited body balanced on my knee, had I not immediately lifted her right arm and held that to the side as well? Of course, she couldn’t grip on with it, but she could definitely rest her arm on the edge for extra support.

When I hand over her favourite circular rattle, why don’t I slip it over her right arm like a bracelet instead of always putting it in her left? Why don’t I dangle toys that side so that she can learn to reach out with her right arm too?

She knows somehow that there is something not quite the same about her little right hand. But if I continue to show the same preference as she does I fear I could end up mirroring and perpetuating her reluctance to use it. If I want to see her be the best that she can be, then I need to start off by showing her all that she can do.

Show her that she can reach.

Show her that she can bash and wallop.

Show her that she can flail it wildly and knock things over.

Next time we’re in the pool I’ll be sure to put the floating ball in front of her right arm and to help her reach with it onto the side. Her little hand might well be the perfect dummy (it’s never out of her mouth when she’s tired!) but it’s the perfect tool for plenty of other things as well and it’s high time we both realised that.

 


If you’ve enjoyed following our journey, please take a moment to vote for us in the UK Blog Awards 2017!

Follow the link below and select the “Health and Social Care + Parenting” category.

http://www.blogawardsuk.co.uk/ukba2017/entries/thoughshebebutlittle2016

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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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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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