Simply a matter of perception

Simply a matter of perception

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

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

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

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Having a blast in the waiting room!

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

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Admiring the artwork

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

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

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Showing off her skills for the consultants.

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

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Hero has left the building. Thank you very much.

Now I am one

Now I am one

Our little lucky fin is coming on in leaps and bounds. She turned one this month and has developed a love for books, dogs and standing up unaided.

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She’s been developing fine motor skills with her left hand, turning pages on board books, picking up little bits of food etc. Despite this, she is a little behind her peers on hand-related milestones. She doesn’t point, wave or clap yet, but it’ll come when she’s good and ready and in the mean time you should see her holding multiple toys like a pro!

Perhaps one of the biggest surprises for us, is that she’s started using her right foot in lieu of her hand sometimes. This was picked up by the paediatrician a few months ago, but at the time I wasn’t completely convinced. I didn’t think she’d need to use her foot because she has a full arm, but it’s very difficult to ignore now. She’s got a baby laptop and uses the mouse, which is on the right hand side, with her foot rather than her lucky fin. She was banging and spinning her drum with her foot today. Although I’m yet to successfully catch her on camera!

We’ve been thinking a lot about representation too. Confidence in the face of unwanted attention is something I’m keen to build in her from the start. I never wanted to stand out as a kid and, as she’s not really got the option of blending in, it’s important that she feels equipped to deal with any questions or comments. After a few difficult incidents (you can read about those here and here), it became clear that I too need to find a way of dealing with these experiences. In the soft play a few weeks ago a girl grabbed her little hand and pulled it towards her to look. I’d love for our lucky fin to be able to handle situations like that with grace and assertiveness. Seeing people like her on TV, in magazines and in regular play dates with our wonderful local Reach family are all a huge part of that.

Toys too are a key part of a child’s life, and youngsters should be able to see themselves represented in their play things. I have to admit I’ve wondered if melting the hand off a toy doll would be an effective way of making it like her. Although this is a rather gruesome contemplation at the moment and I can’t help but think of Sid from Toy Story! However, she received a gift for her birthday last week, which needed no modifications.

Please meet out first lucky fin dinosaur, who was made bespoke with a limb difference just like our girl’s!

Even though she’s probably not aware even of her own difference yet, let alone the dinosaur’s, she was still fascinated by its arms.

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I really look forward to using her lucky fin dinosaur, as well as some of the awesome picture books we have, when her questions start coming.

Nothing to see here

Nothing to see here

I was asked recently why I hadn’t done a blog post in a while and I had to think about my answer for a moment. It took me a while to realise that the reason I haven’t blogged is because Hero’s difference has barely been noticeable over the past month or so.

There was that memorable incident when our little problem solver learnt to get her lucky fin out of her car seat harness on the M4 motorway last month. That was fun. But it was the Reach community to the rescue and, after some trial and error, we managed to stop the problem becoming a regular occurrence with the judicious use of some Velcro.

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I will not be restrained!

There was also the moment I felt a bit over sensitive in a baby group when we were singing about having ten fingers… yet again. That felt a bit rubbish, but mostly because I wasn’t sure how I should model a response for Hero. Reach community to the rescue again!

But despite these little things going on and some major changes happening over the past month, including me going back to work part time and Hero starting nursery, we’ve barely noticed her difference.

That says a lot I think. It says a lot about how far I’ve come on this journey, and it says a lot about how determined and smart our little girl is.

She learnt to climb the stairs on her first attempt. She spends countless minutes trying to figure out how to clip the two pieces of her highchair harness together. She’s learnt how to pull toys on string closer to her, by looping the string around her little arm and creating a pulley.

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Top of the stairs: I can climb mountains

It was only after I walked away, having dropped Hero off for her first trial session at nursery (and after I’d stopped crying), that I realised we hadn’t discussed her little hand at all with the staff. It simply didn’t come up. It didn’t need to be mentioned. We talked about nap routines (ha!), we talked about foods she liked to eat and things she liked to play, but we didn’t talk about her hand. She doesn’t need help feeding herself finger food. She doesn’t need help with her sippy cup. She doesn’t need help manipulating toys and moving about the place at high speed. She simply doesn’t need help.

She might not always do things the traditional way, but she’s wasting no time in finding her own way. And, as I’m learning to appreciate when it comes to annoying baby songs, ten fingers really are overrated!

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#tenfingersareoverrated

 

Milestones: Cruising for a bruising

Milestones: Cruising for a bruising

The world just got a whole lot bigger for Hero and things just got a whole lot more interesting for us: Our lucky fin baby mastered crawling last week.

By this I mean, crawling forward, not the backwards shuffle she’s been perfecting for the past few weeks. It’s been an amazing process to watch her figure things out and she found it a lot quicker to master coordinating her arms than her legs. So much so that for almost a month she’s been pushing herself backwards, without understanding quite how she was doing it or why. The look on her face as she got further away from her intended destination was a picture!

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The past week she’s been building up to going forward, inch by calculated inch. It started off with her learning to get her knees up underneath her and from there she moved on to dive bombing onto her tummy in order to reach her goal. She’d been teetering on the edge of the forward movement for so many days I banned anyone from putting her on her tummy when I wasn’t in the room. I’ve been with that girl almost 24/7 since her birth and damned if I was going to miss this huge milestone!

I’d like to take a closer look at the impact Hero’s lucky fin has had on the process of her learning to crawl, but as she’s our first, we’re new to the whole thing and really can’t comment. We are so proud of her for smashing this milestone after being advised during pregnancy not to worry if she missed or was late in achieving certain milestones. Nothing, nothing at all, could have been further from the truth.

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That’s not to say that it’s been easy for her and, while she’s mastered this milestone like a pro, she’s got a few bumps and bruises to show for her efforts. Her lucky fin might not be holding her back, but not having a hand does have its disadvantages when trying to lean forward on that side. All too often she’s tumbled over the top of her lucky fin and face planted on the ground. She never falls over her left hand; it’s only ever over her lucky fin. As a result, we try to contain most of her crawling on a soft mat at the moment and the poor kid has been sporting an almost permanent bruise on the right side of her forehead for the past week, which she seems to update as soon as it’s faded. It only ever happens when she loses concentration or gets distracted from what she’s doing for a moment, so I don’t think it’s a phase that will last long!

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Mr Bump!

Watching her figure things out in her own sweet way and watching her trial and error what she can do, is so humbling and exciting. She’ll learn, she’ll work out how to use her little hand differently, and she’ll keep on smashing through those milestones still to come.

Proud

In leaps and bounds, life finds a way

In leaps and bounds, life finds a way

It’s difficult now to think back to those days of worry and fear we went through during my pregnancy. It’s getting pretty difficult to worry overly about Hero at all. While she’s had some weight gain struggles and has slid down on that dreaded chart, about which we’ve fretted endlessly, in every other way she’s absolutely thriving. Over the past month or so she’s transforming before our eyes into a bright, bubbly and engaged baby who is clearly  a very capable little girl. Almost every day she takes yet another of my worries and knocks it out of the park.

At the beginning of the month she completed her first term of swimming lessons. She’s never more relaxed than when she’s in the pool and as the term progressed she’s developed the use of her lucky fin more and more each lesson. When she first began the Aquatots Duckling course, at four months old, she refused to use her little arm in the pool, clamping it to her side instead. With some gentle coaxing from myself and her wonderful teacher, she has learned to use it just as much as the other. Now when we splash up and down the pool she’s stretching out with her right hand just as much as her left. She doesn’t use it to splash the water yet, choosing to make waves with her left, but it’s only a matter of time.

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A Duckling Graduate

Then there are the toys. Watching her play it’s been painfully obvious all along that, contrary to what many people said, she does know that something is missing. We’ve watched her reach out with it, only to fall short. We’ve watched her try to clasp things in her little hand only to hit thin air. But we’ve also watched her learn what she can do. She’s started hooking toys over her little hand, she’s grasping things in her left and exploring it with her right.

The introduction of the sippy cup into our daily routine was yet another cause for concern. I spent goodness knows how long in the shop picking up and examining the many (many!) sippy cups they have on offer. Which ones would be easiest for her to hold? Which could be grasped one handed? Which was light enough for her to lift?

And you know what? Surprise, surprise, I needn’t have bothered at all. By her third attempt at the sippy cup she was picking it up in her left hand and hooking the other handle over her right, holding it and lifting it as if nothing was amiss.

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The Sippy Cup Master

I realise now that when people said to me “she won’t even know it’s missing”, what they really meant was: she’ll find a way. Each and every day she finds yet another way.

My favourite quote from my favourite film is, “life finds a way”, courtesy of Ian Malcolm in Jurassic Park. I love it so much that the line became part of the artwork on our wedding day: Love finds a way. Now here’s my daughter, showing me every single day that in every single way life really does find a way. Despite all my anxiety and all my fears, she couldn’t be more perfect, more bright and in possession of a prouder mother.

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.

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.