Kids vs Parents: Same window, different view

Kids vs Parents: Same window, different view

“My big hand isn’t working!”

Hero had pulled her arms out of her seatbelt straps while we were parked up outside a shop. She manages to tuck her little hand beneath the straps of her 5-point harness and uses her little hand to push the second strap off the shoulder of her other arm. When I told her to put her arms back in the straps she slipped her baby hand back under easily. Big Hand, however, couldn’t get back in. It was too big to fit underneath the tight strap as easily as baby hand had done.

In her opinion her big hand, or her “normal” hand, simply wasn’t up to the job. It wasn’t able to perform the way her baby hand does.

And that there is the difference in our journeys – mine as a two-handed parent and her as a toddler with a limb difference. I might worry and see something as a problem to be solved; she sees only opportunities. I might be afraid – she has no inkling of fear. Where I see a mighty challenge to be overcome, she’s just getting on with her day. I might struggle to see how something could be done; she’s about to find a way. I worry I haven’t got a map; she’s just happily following her feet.

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This difference in perspective is far from being a bad thing. For me as a mum it’s incredibly liberating. Knowing that, just because I can be scared and sad for her, doesn’t mean that she is. She’s feeling none of the negative and instead has a blank canvas of possibilities ahead of her, with no sense of apprehension. The realisation has filled me with a confidence that I had to earn and develop over my daughter’s first years of life.

 

Avoiding the negativity

A fellow Reach parent said to me a few months ago that her now older Reach child didn’t like coming to the AGM and family weekend anymore because he didn’t like the negativity of the parents who gathered there.

I’ve also had a limb-different adult message me in relation to one of my posts to say, quite kindly but assertively, that my worry was entirely misplaced. There was also recently a post from diversity speaker and campaigner, Nicole Kelly, explaining how she felt about sitting in on a parent’s panel at a limb-difference conference in the USA.

I remember walking out of that first meeting SO HURT and SO MAD at all of the parents. How dare they cry about their beautiful child! – Nicole Kelly

I feel, and I can’t speak for everybody but I’m sure I’m not alone, that my daughter is one of the best things on the planet. Her five fingers are perfect. I wouldn’t change her for the world. I would never have even considered doing so – even in my darkest moments years ago. I am, without a doubt, her biggest champion and I have to work very hard at curbing my bragging rights, at which I don’t always succeed!

So it was awful to think that a child (or adult) might feel that somehow, parents were disappointed in their child. That the parents’ feelings were a reflection upon them as an individual with a difference of any kind.

 

Having a difference makes no difference

Perspective is essential and of course a parent’s perspective is going to be totally different to the child’s. Isn’t it always, without or without a difference or disability involved? You might both be looking at the same window, but the child is looking at it from one side and the parent from the other.

Please understand, we’re not meaning to be negative, we’re just worrying. It’s a parent’s lot to worry. Having a child with a difference actually makes no difference. We might worry about whether our child could achieve something they themselves never had a moment’s doubt over. We might worry about other children being rude or about our child being left out, when all they want to do is play.

But doesn’t every other parent also feel the same, to different degrees?

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We worry about whether or not our child is wearing a coat when they simply can’t feel the cold. We worry about whether they’ve tied up their shoe laces when they’ve not got a moment to spare.

It’s a parent’s job to see the threat where the child sees only fun. That is not to say that we think they can’t do it – it’s just that we’re frightened for them in case they don’t. We don’t want to see them disappointed or dispirited about their own abilities. We want them to see themselves the way we do – and yes, that might translate into a worry that perhaps they won’t. It’s a parent’s job to keep their children as fit and as happy as possible – so when your child has a difference of any kind sometimes we might worry a little bit more.

So if you’ve got a disability or a difference please know…

 

Your parents might cry from time to time

…but not because of you. Many cry because they know that the world can be a cruel place, as well as wonderful, beautiful and exciting. We might cry because we know that, at some point, you will likely experience discrimination. We cry because we don’t want you to face extra challenges and attacks on your self esteem. We don’t wish you were different from the perfect one you are; we just wish the world was.

We wish you wouldn’t have to face any more hurdles in life than the next child. We wish that disability wasn’t still feared or pitied in some corners of society. We wish that every difference was accepted without judgement. We cry because we love you more than anything else and we don’t want the world to ever shake or shatter the sense of self acceptance and love that you’ve hopefully built up under our gaze. We wish for you to grow up to be self confident and and to love yourself as much as we do – without having to earn or fight for that right.

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A parent’s worry is not disappointment…

…it is simply a fear of the unknown.

It’s struggling to conceive how you might achieve something with fewer tools than they might have themselves. They simply can’t fathom how you might be able to tie your laces with less than ten fingers and it’s their privilege that one day you will show them. They worry about not being able to protect you from all the things they thought they would or could. It’s the worry that they might not be modelling the best reactions and responses to situations they’ve never had to deal with before.

I wouldn’t ever dream of changing my daughter’s hand. Sure, I don’t want her to face the extra challenges she might have to, but to me she is utterly perfect. She is beautiful and she is incredibly capable. I am her biggest champion and both revel in and encourage her growing independence. But still, I worry.

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A parent’s worry is not an expectation of failure…

Our dreams for our kids are just as big as every other parents’, if not bigger, and we – better than anyone – know just how tenacious, talented and able you are. We see first-hand what you are capable of, what you overcome and how you throw yourself headlong into challenges that you didn’t even realise should have been hard. We’ve not lowered our aspirations for your achievements simply because you have a difference or a disability.

When I was pregnant I wrote about the sadness that my daughter wouldn’t be able to automatically share in her Dad’s hobbies of violin and hockey playing. Yet now I can’t help but grimace at that very idea. Why on earth can’t she play violin? Why can’t she play hockey? She might need an extra tool to help her, but that doesn’t mean that she won’t. Unless of course she’s inherited my sporting and musical ability – in which case there’s no hope!

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My daughter taught me

But she was the one who taught me that. Before my daughter was born all I had were my worries and I needed to see her – in action – to show me just how fine she was going to be. I needed to see her with her friends celebrating and loving differences.

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Best buddies ❤

I needed to see her climb that ladder without so much as a hesitation. I needed to see her grab that wheelbarrow and roll it along without a care in the world – without any idea that anyone should even notice or care what she’d done. Climbing that ladder, opening that bottle or pushing that wheelbarrow wasn’t an achievement for her; it was just another activity out of many in her busy day. It was not even note worthy. There was no: “Mummy, look what I can do!” because to her mind there was nothing to see.

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Nothing to see here!

So if you feel hurt, or angry or frustrated at a parent’s expression of concern, at their tears or their fears – please remember: We are not disappointed in you. We don’t think that you ‘can’t’, we don’t feel we’ve been hard done by in any way shape or form. But we do worry about whether you’re wearing your coat out, just like every other parent. And we love – more than anything in the world – to be proved wrong time and time again; to be shown that, actually, it’s just not that cold outside.

This hand and that hand: What is awareness in a young child with a difference?

This hand and that hand: What is awareness in a young child with a difference?

“She’s not even aware she’s different yet.”

It’s a phrase I both hear and have said quite often as the parent of a toddler with a limb difference. Recently though, I’ve started to question that statement and to wonder just how aware she is and what that awareness really means.

Last October was the first time she acknowledged openly that her hands might be different from one another when she referred to them as Baby Hand and Mummy Hand. Unsurprisingly, that first moment took place at the Reach Family Weekend, where it is totally normal to be a bit different.

She’s barely made reference to it again since then, slipping easily back into our normality at home where her limb difference isn’t anything outside of the norm. I’d returned to thinking that she doesn’t find her different hands overly noticeable or noteworthy, to the misconception that she wasn’t aware.

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This hand and that hand

Yet, recently I’ve noticed quite a change in how she likes to play with her toys, or more specifically, how she would like me to play with her toys alongside her.  Usually, she is satisfied for her and I to have one toy each, but lately she’s started to insist that I hold two toys to her one.

“This hand,” she will say, passing me a toy. I start the game, but before I can get anywhere she’s pushing something in to my other hand (which is usually occupied trying to prop up her little sister who is just learning to sit) and repeating, “This hand, Mummy. This hand!”

She knows. There’s no getting around it and no explaining to her that I’m using that hand for something else, no hiding it beneath a cushion and definitely no taking a cheeky sip of my drink while we play. She knows that I have the capacity to hold two toys and she would prefer it if I didn’t shirk my duties or otherwise waste the luxury of my second hand by drinking or holding up babies!

What she doesn’t show is any confusion, any sadness or any frustration. It is a simple fact that Mummy can hold two toys and she can hold one. There’s no apparent concern that we might be different or that she is in any way hard done by in light of this fact. It simply is what it is.

When she first openly acknowledged her different hands, back in October at that Reach weekend, I felt a bit emotional at the pronouncement. I didn’t feel choked up because she was showing any sadness, she was just stating a fact. I was choked up because I wasn’t sure that I was ready or prepared for her to know. But she knows already.

The statement “She’s not even aware she’s different yet.” is becoming more and more obviously redundant. She totally knows she’s different. She knows that she has a little hand and a big hand; Mummy Hand spends enough time rocking Baby Hand to sleep beneath a kitchen roll blanket!

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What she doesn’t know

What she doesn’t know, more to the point, is that the world might not be designed with her one hand in mind. What she doesn’t know is that some activities might be a little bit trickier for her. What she doesn’t know is that some people in the world might think her difference is something to be pitied, or feared, or mocked.

It’s the difference, as my good friend put it when I tried to verbalise these thoughts, between her being Aware, with a capital A, and her being simply aware. The awareness is that one hand is not the same as the other, or that Mummy has two hands while she has one. It is that and nothing more. There is no sense that things should or could be anything other than what they are.

Molly Stapleman, founder of the Lucky Fin Project and tireless champion and supporter of the limb different community, said it best when she said:

A child born with a limb difference is whole. They have not lost anything for this is the way they were born… They are equipped with the instinct to do and learn to do what they want to do; find comfort; hold a bottle, play, crawl, climb, walk. There is no self-concern with how they look. People often say our children “adapt so well”, but as a baby it is not about adapting because it is all they have ever known. There is no altering of what they would have done- it is simply a matter of what they WILL DO with what they have. Our children were born physically different but also with the innate ability to meet and conquer each task and challenge that comes their way long before they can even recognize what is viewed/assumed as a challenge by others…

– Molly Stapleman, Luck Fin Project founder

Any sense of negativity my daughter might have about her hand surely won’t come from her, it shouldn’t come from us as her parents, or from her friends and family. It will come, if it does, from a sense that others might project on her, that sense that she is someone who stands apart from the rest, that raises curiosity or concern, someone who simply looks a bit different.

 

Capable and wonderfully made

The sense of confidence she currently holds is something I dearly, dearly hope she glows with throughout her entire life. Or, if she ever loses that shine, I hope it will always come back to her, like a bear emerging from hibernation and coming out into the light. I hope that she always harbours, no matter how buried or deep, that sense that all is right with the world and her place in it. That she is entirely who she is meant to be. That she is talented and able and beautiful.

I hope her sense of awareness always has a little ‘a’ at the start. That she heads unwaveringly out into the world to do whatever she sets her mind to, that she does so from that foundation of normality and acceptance that she feels when she is at home or surrounded by her friends and family.

A child being born with a limb difference is not tragic. It’s extremely important to show our children how capable and wonderfully made they are. If we treat them as flawed or limited that is who they will believe themselves to be – and that would be the tragedy.

– Molly Stapleman, Luck Fin Project founder

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The way she is meant to be

We feel that she’s always been aware that she has, as she likes to put it, a Mummy Hand and a Baby Hand, on some subconscious level. We’ve witnessed many occasions during her babyhood where she would look at one hand and then the other, clearly wondering – however instinctively – why one hand could do what the other could not.

In short, she’s aware that she has a little hand and a big hand. She’s aware that she can hold one toy, while Mummy, Daddy or her little sister can hold two toys with their two big hands. What she doesn’t realise is that her normality isn’t actually the norm for the majority of people on the planet. She’s not aware why children sometimes exclaim or stare at her in the play park. She’s not aware that there are some people out there who might find disability “disturbing”, coming from their ignorant and narrow worlds.

As her awareness grows, so too does mine. She is more able and talented than I could ever have dreamed and she is blossoming into the most kind, adventurous and fearless young lady who makes me proud every single day. There might be some more emotional days, and there are certainly times when I have to be careful not to project my parental worries on to her blank canvass of confidence, but at the moment there is no sadness in her growing understanding.  There is only her potential and her sense that she has always been this way and that is the way she is meant to be.

 

 

 

Fit for purpose: An amateur’s step-by-step guide to making an adapted lucky fin glove

Fit for purpose: An amateur’s step-by-step guide to making an adapted lucky fin glove

I should start this guide with a little disclaimer: I am not a seamstress of any sort. I’m an enthusiastic amateur who loves a bit of crafting with a purpose.

I love seeing my daughter get stuck in with anything and everything. She loves helping out in the garden and has been struggling to help us carry cuttings and rough objects around the garden with a pair of gardening gloves on. It’s one of the few times we see her get frustrated as the right glove repeatedly falls off of her little hand. She eventually throws the gloves on the ground and declares sadly that she “can’t do it”. The thing is, she absolutely can do it! Give her the right tools and equipment and she can do whatever she sets her mind to.

I’ve always believed that she should have clothes that fit her arm, and not have to feel like she’s trying to fit into a mould that she simply wasn’t made in. When she was small I used to adapt all of her baby grows and she’s incredibly lucky to have jumpers, gloves and cardigans knitted bespoke for her by Grandma and Great Granny!

I couldn’t find a suitable ‘how to’ online and, let’s face it, needing to chop all the fingers off a glove and make it half the size is not something that most people will have need of doing in the course of their lives! So I decided to take some pictures as a went along, with the view that it might be helpful for someone else if it worked and that no one need ever know if it went horribly wrong! 🤫

Happily, it was a success! It only took around 20-30 minutes (which was a shame as I was enjoying myself) and I only needed very basic tools (and skills!).

 

1. Find your tools

All I needed was a pair of gloves, tape measure, scissors, a stitch-picker, pins, a needle and some thread. Simples!

Luckily for me, had my experiment in crafting gone wrong I wouldn’t have been out of pocket too much as I found these kids gloves in the bargain bin at my local hardware store for 75p. With hindsight I should have gotten a few pairs!

I’ve had no luck finding decent baby/toddler gardening gloves, so these ones are still pretty huge on her, but at least she’ll grow into them. In the meantime, glove companies are missing a trick not making gloves small enough for the littlest people! I don’t know many toddlers that don’t love hanging out and helping out in the garden!

 

2.  Remove the fingers from the glove

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3. Unpick the seams

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Turn the glove inside out.  Cut through the cuff, unpick the seams around the hand of the glove and lay it flat.

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4. Cut to the right shape and size

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This is where your approach and mine might differ somewhat! I am not a perfectionist. I am a ‘that-looks-about-rightist’! I did measure my daughter’s little hand to start with, but I have to admit I didn’t do a lot with that information other than use it as a guideline.

I cut about 3cm off the cuff and then cut the hand of the glove into a tapered shape, removing the thumb of the glove at the same time. With hindsight, I should have made the angle on either side a little more even at this stage as the finished article is a little wonky. But it works, and hey, they’re for nothing more glamorous than digging in the mud and mess after all!

 

5. Pin in place and sew

I used a basic running stitch to sew the restyled glove back up. I kept the hem narrow to avoid it rubbing on her little hand and then doubled back along the stitching to make sure it was extra secure, as it’s going to be put through some fairly heavy use.

 

6. Turn the right way out and voila!

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Somebody was incredibly happy to try on her new gloves and to discover that they actually fit! Now all we need is a bit of warmer weather so we can get outside and test them out!

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One-handed signing in a two-handed world

One-handed signing in a two-handed world

There is no better example of the emotional journey we’ve been on over the last two years, since our daughter was born without her right hand, than looking at our progress through our baby signing classes.

I started attending Sing and Sign classes with Hero when she was around 8 months old. It’s a superb baby and toddler class, which develops the use of hand signs and gestures as a means to supporting the development of a child’s speech and vocabulary. Hero is a bit of a late talker and so we’ve found the signs an invaluable and fun means of communicating with her and her with us.

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“What’s that?”

 

Sitting in the spotlight

And yet, when we first started I really struggled with the classes. As you can imagine, the class is all about hands and how we use them. The opening song at every class called for the children to hold up their hands and wiggle their fingers. Back then, when Hero was younger and my feelings were all a little more raw, I used to get a twinge of heartache every single time.

Back then I felt like the song lyrics shone a little spot light on Hero and I, I felt like it drew attention to her difference and I’d find myself looking down at the floor and trying to ignore those feelings of being in a goldfish bowl. All feelings I strongly suspect many parents of a child with a difference can understand and empathise with. Also feelings that, I’m sure, weren’t entirely true (see my post about feeling hypervigilant). I don’t really think anyone was looking at us, maybe they were at first, maybe they weren’t. But the reality doesn’t shake that sense of insecurity you might feel inside from time to time as you come to terms with a child’s difference.

However, as time wore on and we kept going to classes I started to adjust. Many of my blog posts have highlighted our journey from worried and hyper-sensitive to accepting and confident; it doesn’t occur to me now that Hero is anything other than one of the Sing and Sign crew. I don’t even notice the words and the lyrics anymore, the ones that at first felt so painfully obvious.

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“Where is it?”

 

Two-handed signs for a two-handed world

Another little hurdle I felt that we faced was in making and expressing the signs accurately when Hero was missing half the tools to do so. Like many things in life British Sign Language, and other signing variants, are designed for a two-handed world.

At first adapting the hand signs, while simple, still sent these feelings of sensitivity bubbling up in me. Sure, we can adapt the signs, but it felt a bit rotten that we had to. Those feelings say a lot more about my own emotional journey as a parent of a child with a limb difference than they do about any real challenges we may have faced using the signs in class!

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“Ouch!”

When I finally plucked up the courage to speak to our class leader, Beccy, about how I felt using and adapting the signs she was nothing but reassuring that any changes we made would not remotely be a problem.

“At Sing and Sign, we don’t teach sign language as such, we teach communication. Communicating through sign with your pre-verbal little one is an amazing window into their worlds. It doesn’t actually matter what signs or gestures you use and this makes signing possible for everyone!” – Beccy, Sing and Sign Chepstow Newport Lydney Monmouth

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“Baby” 

Unconscious little changes

Up until our second term the signs had been pretty easy to adapt and Hero started doing it naturally and unconsciously – not realising she had any difference at all of course. However, when we started learning the British Sign Language alphabet I began to foresee some possible issues. A number of the letter signs require the use of fingers from both hands, something that’s simply impossible when you have only five.

Exactly as I’d done after being told of her difference at our twenty-week scan, I took to the Internet and researched how to use BSL with one hand. I couldn’t find a lot to help me guide Hero. While limb difference is the norm for us, it turns out that it’s not so common that there is an official one-handed signing system! However, I was eventually directed to a young lady’s Instagram account and YouTube videos. Just like Hero,  Elizabeth had been born without one of her hands and despite this has taken up and excelled at British Sign Language.

She had been kind enough to share videos of her one-hand-adapted signing online. She bravely put herself out there and was keen to test how well she was being understood.  She’s been reassured by her viewers and followers that, despite using her limbs slightly differently to make the signs, she was easily and completely understood. I loved trawling through Elizabeth’s videos and I started to use some of her adaptations with Hero in class.

 

 

“I’m always reassuring parents that they don’t need to know the official sign for something. Make it up! That’s part of the fun! Babies and toddlers quite often adapt the signs that you show them anyway and may even progress to making up their own. If signs need to be changed slightly to accommodate differences, then that’s no problem. Consistency is the key!”- Beccy, Sing and Sign Chepstow Newport Lydney Monmouth

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“Rabbit”

Offering reassurance and finding some of my own

When I set out to write this post I was hoping to reassure other parents who might be nervous about attending baby groups or similar style classes with their limb-different little one, having received numerous messages expressing that fear. Yet, as I began writing, I realised that as well as (hopefully) reassuring others, an exploration of our baby signing journey has shown me just how much change there has been in my own mindset, from the worrisome early days when Hero was just months old to now as I wrangle our energetic, tenacious and entirely unstoppable two year old!

From our very first term when I felt self-conscious and acutely different in our two-handed world, Hero now totally rocks these differentiated signs. They were designed for communication and have given Hero and I a fantastic means to understand one another. We’ve been able to have entire conversations using only our hands before she’d even developed the vocabulary to express the same things out loud.

I’ve gone from self-consciousness and a little fearful to confident and certain and, as I’ve said time and time again, it’s been Hero who’s enabled that change in me. It didn’t matter how many times someone told me she would be just fine, I could never quite let the worries go until she started showing me for herself. She didn’t wonder if she should do the signs or not, she didn’t question whether they were different to the other kids’ signs or whether they even made sense. She just went ahead and did it – exactly as she approaches everything in life.

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“More!”

Now you are two: Lessons learned from my lucky fin daughter

Now you are two: Lessons learned from my lucky fin daughter

And now you are two.

I’m not too sure how it happened or where the time has gone. I’m not sure how a pregnancy that felt utterly endless has left me now with a bouncing and all too energetic toddler. I’m not sure how, despite how much I’ve savoured and clung on to every moment, time has still passed.

And now you are two!

I can’t help but think back to when you were born. It had been a scary pregnancy, wondering if you’d be ok. Then a very bumpy arrival meant you were whisked off to intensive care before I’d had a chance to touch you. The first time I properly saw your face it was surrounded by tubes and wires. But your cheeks were restored to a rosy glow, your eyes were bright and your little hand was utterly gorgeous.

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The first time I saw you ❤️

I can’t help but marvel at how far you have come and, moreover, how drastically my thoughts and feelings have changed in that time.

Back then I was worried. I was worried about everything. I was worried about how people would react, I was worried about how you would cope. Every little task I foresaw felt like a mountain that must be climbed. I fretted about how you would hold a toy. I fretted about what cups you’d be able to use. I fretted about how you’d be able to feed yourself with ease.

What a waste of my time!

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Then and now

Now I find I don’t often give a second thought to how you’ll get things done. You just will and, to be honest, it’s none of my business how you want to go about it. It’s not my place to step in with my two-handed mind and show you ways I would do it. Because I am not you and most likely, you can do it better. (That doesn’t mean I don’t reserve the right to buy crazy gadgets off the internet to help in your exploration – those random Amazon plate dividers have saved having to sweep up countless peas from the floor!)

I remember worrying about how people would react to you. When you were tiny I was anxious for people to know about your hand before they met you. I just couldn’t bear the thought of seeing expressions of surprise, pity or perhaps worse on their faces.

Now your hand isn’t a thing anymore.

Yes, sometimes people look at you. They even stare sometimes. But what I’ve learned in the last two years is that they’re actually staring at your smile. At your personality. At your vitality and zest for life. If they even notice your hand it’s usually with wonder at the fact they never noticed before. Some still stare at your hand and I do my best to ease their minds, but some people simply won’t be helped and, provided they’re not being too rude, that’s their problem and not ours.

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They’re actually staring at your smile

Way back in 2016 I wrote:

“It’s that moment when you watch a friend’s small child grappling their two perfect hands around a toy and you realise that your daughter, however normal, however confident, just won’t be able to do it that way.” – Trying to find a little peace of mind, 2016

No, she won’t do it that way. And, you know what, I don’t mind that much any more. I watch her grappling in her own way and I am filled with such a fierce pride I don’t think I could even begin to express it. It’s a feeling I try not to convey too openly as I can’t help but feel the pride is tinged with a little bit of a brag; it’s a sense of “look what my kid can do and with ONLY one hand!” Then I have to try and resist doing a socially-unacceptable air punch of celebration.

“It’s that moment when you stop and realise that you and your husband won’t be able to hold your daughter’s hand at the same time.” – Trying to find a little peace of mind, 2016

I remember when this thought hit me during pregnancy. It was a bit emotionally crushing at the time, complicated as it was by a fear of the unknown and a good dose of anxiety and depression. You could have told me then that I was being ridiculous but I’d have internally shouted you down, all the while I nodded and agreed to your face.  But now, the idea – while painfully real at the time – seems utterly ludicrous to me.

When I reach out to take her little hand (she prefers you to hold her left – but that’s been a bit tricky since I broke my right!) I can feel her little paw – that tiny pad of muscle just past the wrist – bend and curl into mine. Holding her little hand and having her hold mine, feeling the gentle press of her tiny digits against my palm, is without a shadow of the doubt the most beautiful feeling in the world.

 

The golden years

There’s also no doubt in my mind that these years will be golden ones. She’s young enough to not be aware of her difference in a social sense yet old enough to explore and adventure with the best of them. She reacts with surprise and a little confusion if kids grab at her hand and marvel at it (my reaction tends to be a little more visceral). She’s yet to understand why they’re curious or to question why she doesn’t have two hands as well.

Yet I’m certain her brain knows that she’s adapting. Even now, at two years old she’ll try to reach out with her little hand if you offer her a second toy or snack to hold. Even now she’ll reach for it and touch the object with her lucky fin and there will be a moment of processing and realisation that this set up simply isn’t going to work. Then she swiftly switches hands, she clamps the first object against her chest with her lucky fin and she’ll reach out to take the second with her left hand.

These are the years where we can marvel in her achievements and bask in her sense of unshakable normality. I know a time will come when she’ll start to notice the difference. The time will come when a kid will ask one question too many and perhaps that sense of insecurity and doubt will start to creep in. I dread the day when I have to see that bright, worry-free face crumple a little bit. I dread the frown of confusion and injustice.

And yet now I feel stronger, I feel better equipped and armed for when that time comes. When we first found out about her hand the fears felt insurmountable. And now they’re simply a bridge to be crossed and we’ll follow her example to get across them.

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The sky’s the limit!

Despite the future worries about confidence and fitting in, I no longer worry about her ability. Not at all. I don’t waste a second of my time wondering how she’ll get something done. When I was pregnant, when I was in a darker space and I found it difficult to accept positivity about a scary situation, I hated hearing it. The positivity made me feel my feelings were somehow invalid and unjustified.

But as two years have passed by, I’m now one of the ones shouting the loudest: these kids can do anything! These kids aren’t going to be held back by their differences. These kids might have to work a bit harder at some challenges, they might have to puzzle it out, and they might have to face a bit more prejudice than others. But their ability is never, ever to be doubted. Not by the public, not by their friends and certainly not by their parents.

It’s surprised me to look back and see that nothing anybody ever said would or could have made me feel better at the time. Nothing anybody could have told me would have taken away those fears and reassured me, no matter how experienced or expert they were. The only thing in the world that’s been able to do that is Hero. She’s shown me, moment after moment and day after day that she is more than just fine. She’s proved to me that I don’t need to worry about her or what she’ll do. She’s demonstrated repeatedly that there is another way and that she’ll find it.

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Happy birthday my little lucky fin!

Expecting The Unexpected: Pregnancy after a limb difference

Expecting The Unexpected: Pregnancy after a limb difference

I always hoped my second pregnancy would be radically different to the first. The first started out in blissful ignorance and with us referring to the 20-week anomaly scan as the “gender scan” – ho ho ho! However, we were rapidly disabused of that ignorance, as the sonographer hung up her scanning device and told us there was a problem. The problem they were sure of was that our first baby was missing her right hand. The problems they weren’t sure of were endless. She’d been unable to scan baby’s head or heart and was seriously concerned that there was something significantly life threatening or life limiting wrong with her.

We were ushered into a family counselling room, where I finally went to pieces. From there we were whisked up to the Fetal Medicine Unit (FMU) where they explained all the myriad of terrible things that could be wrong with Hero. They emphasised the abortion cut off limit of 24 weeks. We had precisely 4 weeks to find out what was wrong and to decide whether we should keep her or not (although there was never any doubt to our mind what we would do).

Four days later we were in a specialist hospital for more scans. I don’t think I’ve ever had four days last longer than those. To not know whether to hope or to mourn, to desperately seek hope and reassurance and yet to fear the very same was exhausting. The uncertainty lasted four weeks in all before we were told they were “fairly sure” that baby would be OK, aside from a missing hand. We never got anything more certain than a ‘fairly sure’ – which was our fault. We’d rejected any invasive tests not wanting to put any more risk on our one in 32,000 babe.

Anyone who’s followed our blog knows how everything turned out. It couldn’t be brighter, it couldn’t be better and we couldn’t be happier with our little girl! Fears for her health out the window, fears for her ability melted away: We’re incredibly lucky and are thankful for it every day.

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Yet an experience like that does leave a mark and there’s nothing quite like a second pregnancy to trigger it off. Only my feelings going into things second time around haven’t always been exactly what I expected. Going along to pregnancy scans were a very different kettle of fish this time around. We approached them with a sense of apprehension we didn’t really have last time.

We weren’t helped at all by having a scare at 9 weeks and another one, far worse, at 14-weeks. We were told to rush to the hospital and were accidentally sent up the Fetal Medicine Unit. The moment I walked through the door I broke down. I know the FMU isn’t meant to be hell on earth, but for me it was a place of huge fear, upset and (mercifully temporary) heartbreak. I couldn’t believe I was back there again and under yet more horrible circumstances. Luckily for us we’d been misdirected, were sent elsewhere for the urgent checks and were free to breath another day after investigations proved baby was looking fine despite everything.

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Baby #2

But aside from all that, and the small incident of my badly broken arm, everything else so far has surprised me, pleasantly for the most part. I’ve been surprised by my reactions, I’ve been surprised by my expectations and my responses and I’ve been surprised how good I can feel now after what’s been a pretty stressful twenty weeks!

 

Surprise: Baby’s got two hands!

At our 12-week scan for Baby #2 the sonographer had read our notes, took my intense anxiety into account and kindly spent a lot of time thoroughly checking all of Baby #2’s limbs. Everything looked good. We even saw both the hands on the screen at which point the sonographer turned to us and beamed. Isn’t that wonderful?!

I wasn’t immediately sure why, but I walked out incredibly relieved that everything looked well but my over riding feeling about having seen both hands wasn’t actually relief – it was almost disappointment.

Why on earth would I be disappointed that my baby looked ‘perfect’? I didn’t voice my feelings right away; I didn’t want to sound ungrateful, crazy or churlish. But as I thought about things more, I realised that Hero is absolutely perfect. I wouldn’t change her for the world and every day I celebrate her difference, her personality, her skills and her talents.

Why on earth would I be relieved that Baby #2 had both hands, when my first child was getting on so spectacularly with just the one? Why would I be relieved when I was so fiercely proud? I know there will be harder times ahead for Hero, there will be insecurities, frustrations and upsets and I would never wish upon her, or anyone. But to me she’s utterly perfect and I’m doing everything in my power to bring her up to see that. It would be hypocritical of me to celebrate Baby #2 having both hands, while at the same time believing that Hero is perfect as she is.

Another little bit of the disappointment came from realising that, as much as I celebrate Hero, I don’t really want her to be the only one. We attend Reach family days throughout the year, I show her videos of awesome limb different celebrities, all in an effort to make sure she never has to feel isolated or alone. There’s no doubt that without Reach or the Internet, she’d be the only one in our circle; she would be alone with her difference. I think a little part of me actually wanted Baby #2 to miss a hand as well so that in being different they could both in some way be the same. A part of me was disappointed, not for me, not for the baby, but for Hero.

I know it doesn’t matter – I suspect Hero won’t even care or notice! And I know that I will love both my children with the same fervour, pride and intensity – for all of their differences and for all of their similarities and I can only hope they’ll feel the same about one another.

 

Anxiety: The dreaded anomaly scan

Despite knowing that Baby #2 had two hands, the awful, dreaded 20-week anomaly scan was staring at from me across the weeks. It kept waving at me and reminding me that we weren’t out of the woods yet. The successful 12-week scan (and the follow up reassurance scan after our 14-week scare) could never have fully reassured us because everything had looked awesome at Hero’s 12-week scan too. But if limbs were all good, and Hero was all healthy, what else could there be to fear?

It took a while to realise that I was just frightened of being afraid again. I was no longer under the illusion that the 20-week scan was meant to be a beautiful experience. I knew now that I could be utterly blindsided by something I’d never even imagined, let alone foreseen. I knew that we could be thrown into a whirlwind of medical appointments, tests and consultations and still not get any nearer to an answer. I knew we could be told we might have to make the heart breaking decision to end our child’s life before it had even begun.

I was terrified of the unknown happening again. It never had anything to do with hands or limbs. Ever since we’ve had Hero I get anxious about other people’s 20-week scans too; I have to hear if it all went well. I’m nervous for them, even if they’re feeling nothing but excitement and joy themselves, because I know now what the possibilities are.

The night before our second 20-week scan I barely slept. The weeks and days before I just wanted time to pass. I wanted to be there, I wanted to have it done and have it over with. Then, eventually, I was lying on the couch (the same one where we’d had Hero’s 20-week scan) and the cold jelly was on my stomach. I’d never cried during any other scan but I could hardly breath during this one and my eyes were watering from the moment we’d stepped into the waiting room.

The sonographer was wonderful. She’d seen our notes and she happily talked us through everything – again, taking extra time to check on those hands! We were silent this time, no excited gibbering. We wanted her to have total space to concentrate on what needed to be done. Every time she checked something off her list I felt I could breath a tiny bit more.

There was an awful moment – it felt like hours – where she frowned and concentrated on the heart for far longer than ideal. We could tell she was worried. We moved positions (not easy with an arm in plaster up to the elbow!) and rolled around trying to find a better shot of Baby. I just burst into tears, convinced it was happening all over again. Here we go! Until at last, after what felt like an age, she let out a massive sigh of relief and told us all looked well.

She showed us Baby #2 dancing about on the screen, clearly incredibly relieved not to have had to be the bearer of bad news, gave us a slip saying all was well and sent us merrily on our way.

 

Surreal: No more appointments!

We stopped outside the scan room looking at our photo. I cried again. I knew I’d been stressed, but I hadn’t realised how much until the axe had been removed from above our heads. We looked around a bit and had a moment of ‘what on earth do we do now?’ Were we meant to just… go home?

Last time we’d been in this position we’d been whisked away to another department within moments of leaving the room. We’d started getting appointment letter after appointment letter through the post and we were poked and prodded and scanned to within an inch of our lives. The rest of the pregnancy went by in a whirlwind, with time passing in little dollops of waiting between each new appointment.

At home, this time around, I turned to Google and it looks like I don’t ‘have’ to see anyone at all for another two months.  It was mind blowing. We were just to be left to our own devices! No scans. No check ups. No specialists. All was well.

We do have one consultant appointment lined up for the interim; following on from the last pregnancy and Hero’s dramatic arrival I totally understand why they want to see us. But I don’t think we’ll be returning to the olden days of our first pregnancy. I think/hope the consultant will see us, confirm everything is ok and send us on our way.

It took a few days of getting used to the idea that this was it and that all was well. It took a while for all the intense stress of the past twenty weeks to work its way out of my system. But here we are. And we are so darn excited it’s unbelievable. I never had a moment last time to just enjoy being pregnant. I never truly relaxed until Hero was in my arms and perhaps not even then right away – thanks to on-going very low weight gain, she was well over a year old before I really felt confident.

But I’m here now, getting steadily fatter, being kicked enthusiastically from within, experiencing the pregnancy I’d assumed we’d have last time and feeling incredibly grateful and blessed for every moment. Without all the hospital visits and appointments of last time we have months ahead of us now to enjoy every moment of ‘Hero and Us’ time before this wonderful new interloper arrives!

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Before 3 become 4!

Temporarily one-handed

Temporarily one-handed

I fell over on Wednesday, clambering down a shallow bank in pursuit of my daughter who was hovering close to the river’s edge. Unfortunately for me the bank was wet where my river-bound dog had been dripping everywhere and the next thing I knew I was on the ground and my wrist and hand were in a shape and position I hope sincerely I never see again (although I do have a lovely x-ray photo for posterity, I probably won’t be pinning that one to the fridge!).

Fast forward through a pretty traumatic wait in the mud, bumpy ambulance ride and horribly conscious realignment at hospital and I’m home, plaster casted to the elbow and in a sling. Over night I’ve completely lost the use of my right arm. As someone who blogs regularly about raising a daughter without a right hand the irony hasn’t been entirely lost on me.

I can’t so much as lift Hero up or change a nappy, which I’m finding an incredibly difficult transition to make, despite knowing it’s temporary. Cue a huge amount of people offering and willingly giving a vast amount of time, support and help. That’s the weird thing about an injury like this, you’re the one in pain and grumpy, but it’s everyone else around who is really impacted. And thank goodness for those people and that help – I can’t thank them enough.

Luckily for me I’ve spent the last two years of my life watching videos on how people get stuff done with one hand. So when my sling unravelled itself this morning (ouch!) I initially had a panic. I was home alone, should I wander down to my neighbour’s house in my PJs and with half a dressing gown on? A pathetic sight to start anyone’s day! Then I spotted one of Hero’s hair elastics on the windowsill and I thought back to the number of awesome “how I do my hair with one hand videos” I’ve seen recently. Some fumbling, one flying elastic and a little teamwork between left hand and teeth later and we’re back in business and feeling rather smug.

Hero and I are going to have some adjustments to make over the next six weeks. Like how do two left –handers hold hands comfortably? I think there’ll be a bit of may pole dancing going on! At least she can rest easily that she won’t have to undergo the daily torture of having her hair put into a ponytail for a few weeks and those snazzy plate dividers might find themselves coming in useful for more then just one of us!