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.

Finding the perfect response to an imperfect situation

Finding the perfect response to an imperfect situation

A few weeks ago we had a pretty unpleasant experience when a group of people laughed at Hero’s little hand. It was a group of adults, and they actually laughed. What made it worse was that they had a child with them who, following their example, strained across to stare as well.

Hero had been sucking her little hand like a dummy. It’s happened before, when someone reacted with innocent wonder at the idea that she could somehow fit her entire fist into her mouth. It’d certainly be some party trick if it were true! Only, on that occasion, the person in question had the decency to be deeply apologetic when they realised that she didn’t actually have a fist to fit in.

Unlike that previous time, this one was a whole different kettle of fish, causing a cascade of emotions that knocked me for six for a while and seemed to encompass a whole spectrum of bewildering feelings.

Disbelief

When I first noticed them laughing and pointing I just stared in horror. I couldn’t believe what I was seeing. Surely, surely, people don’t still do that kind of thing? The world’s moved on from the medieval times, when being different singled you out. Now we have disabled presenters on TV, we have a whole raft of paralympian role models. We have no room in our lives for ridicule and prejudice like that anymore.

And then of course you have to ask, what exactly was funny? What could possibly be funny about child who was born without a hand? It’s not tragic. It’s not terrible. It’s not even bad, despite what they might think, but it sure isn’t funny.

Rage

This one is obvious. I couldn’t just stand by and watch someone ridicule my daughter. I was obviously going to march right up to them and say… what exactly I would have said in the theatre of my mind, I don’t know, but it involved a lot of gesticulating and unrepeatable words.

Needless to say, I didn’t march across the restaurant and start swearing blue murder at these people (although a tiny piece of me wanted to). My intense hatred of conflict aside, I tried to picture Hero doing that. I pictured her marching up to someone, her face contorted with rage, reeling off a load of swear words and giving them what for.

What a horrible thing to imagine. That aggression and that anger is the last thing I’d want Hero to parrot. And we are, despite not having a clue what we’re doing, her biggest role models. She will look to us for how to react in these situations and I won’t teach her manners as poor as those who were laughing. We don’t want her to have to live in a world where feeling that level of rage is the norm. Right now, she’s so innocent and sweet and lovely. To see that level of anger and rage mirrored in her face would feel like the end of her wonderful childlike innocence.

Heartache

I’m not sure what word to use in this context. It’s not grief, but I’d be lying if I said my heart didn’t ache. It did. A lot.

It was heartache at learning that someone could be so utterly cruel to my beautiful, talented and just all-round awesome child, that they could be so cruel to anyone’s child. It was heartache at realising that, despite having been lulled into a false sense of security, she is going to have to deal with incidents like this throughout her life from time to time. I dread the day when our wonderfully happy child, who loves almost everyone she sees, realises that somebody is laughing at her or judging her unkindly. It was the understanding that she will have her own demons and insecurities to overcome and that, no matter how much we build her up, idiots like that might be able to knock her down in a careless second.

Understanding

After a ten-month honeymoon period, after ten months of hearing nothing even slightly unkind, to learn that this stuff will happen was frightening. And worse than the knowledge that this kind of thing might happen, is the fact that we will have to deal with it when it does. We can’t deal with it how we might want to, as over protective and instinct-driven parents. We have to deal with it in a manner that we’d like to equip her with. We need to model a response that shows her how to take the moral high ground.

Although we might want, even if just for a second, to leap hell-for-leather off of that moral high ground and drag any unkind and insensitive soul into the mud – we just can’t. Although we might want to just cry hysterically and let those people make us feel  less than we are – we just can’t. We have to be better than that, because she deserves better role models than that.

We want her to know that it’s ok to feel upset, that it’s ok to feel angry from time to time, but that you cannot let those emotions rule you and dictate your actions. You can wallow when you need to, but you shouldn’t make decisions that you might regret based on those flashes of red.

What happened next…

In the end we chose to walk away. I hung back, allowing the party to depart before us so that we didn’t have to bump into them on the way out. By the time we got to the car I was shaking and crying as all of the above started to rush about my head. I didn’t know how to react then and I still don’t now, because I’m not just responding for myself anymore, I’m responding for Hero as well. That complete immobilisation is something we as a family now need to find a solution to. Will we come up with some choice educational phrases or will we simply learn to ignore it? Is there a perfect response to an imperfect situation?

Finding an answer to this is made a little more complicated by us both approaching the situation from entirely opposite directions. My husband wasn’t as upset as I was and, from his foundation of self confidence, he won’t ever be as upset about that kind of experience as I will. He’s much more able to separate himself from the unwanted opinions of unknown people, whereas I will always take them deeply to heart. His upset will come on the day Hero understands what’s happening, the day she is upset is the day he’ll be upset, where as I will feel it all in advance as well.

It’s taken me a few weeks to process what was a few short minutes of experience, to distil it into something I could put into words. I too wanted to follow my own advice; I didn’t want to commit my flash of rage and deep upset to the pages of time. I wanted to slow down, to take a step back and to understand what had really happened. Initially people told me to feel sorry for the people in question, but a few weeks ago I simply couldn’t do that. Time is a miraculous soother, however, and I now see the point people were making. How much poorer their lives must be, as well as the life of their child, living in the world of intolerance they’ve created. At the end of the day, it’s their loss and not ours. At least, that’s what I’m telling myself.

Perhaps more helpful to remember, both for Hero and for myself, is that for every one person who is mean or insensitive, there are hundreds of thousands, if not more, who are are accepting, curious and kind. May the odds be ever in our favour!

 

 

 

Sticks and stones

Sticks and stones

Some times you’re cruising along, as happy as Larry, when something someone says hits you right out of the left field. Some times you don’t even realise until much later, that the words have sunk deeper than you could have imagined and caused a rush of emotions you never expected.

Until recently we’d been incredibly lucky to have never been on the receiving end of any negative or hurtful comments about Hero’s hand. We have had a few flippant comments (“At least it’s just a hand!”), but generally her lucky fin has been met with curiosity, wonder and affection. The outside world, as well our circle of friends and family, has always been a reflection of my own outlook and the outlook we hope to foster within Hero.

This weekend, for the first time, I’ve been really shaken by something someone said. The comments came from a child, and I think were both innocent and well meaning. She was just making an observation and a judgement, as children do and probably adults as well. At the time they were spoken I didn’t really react, I brushed the comments aside with a joke and thought nothing more of it for the rest of the day.

Then I got into bed that night and those sentences kept coming back again and again. I just cried. My heart ached because I realised that I can’t protect her from comments like that. As she grows in independence and confidence, as she spends more and more time away from us, I can’t just hold her to me and shield her from things the world might say. Nor should or would I try to do so, as much as my emotions might protest.

I can’t walk up to every single man, woman or child that might come across her path, grab them by the collar and say, “please don’t hurt my child.”

I hope that we, her parents, her family and her friends, can instil within her such a sense of stability and self worth that these comments will just roll off her like water from a duck’s back. Because they certainly don’t roll off mine. The experience has taught me that I need to come up with a response. I’m a writer, not a speaker, and have always needed time to process my thoughts and reactions. Only now I may need to create a stockpile of responses which are both affirming and educating so that I can turn these comments around into something positive. Isn’t that what I’d like Hero to be able to do after all?

I hope that she never feels the same heart ache those comments have given me. I hope she can laugh right back at them knowing that she might look different but that’s ok. That’s more than ok. To the people who matter she’s perfect.

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

 

A letter to when I was a limb-difference learner

A letter to when I was a limb-difference learner

As Limb Difference Awareness Month has ended, so too has another chapter of my life. But endings are not necessarily sad things. To quote a popular cliché, ‘when one door closes, another door opens’, and this particular opening door is one most welcome.

April has been a big month in the Though She Be But Little household. Our lucky fin baby has gone from crawling, to standing to thinking about trying to walk (albeit with a lot of wobbling and support) and, perhaps the biggest of all, she’s also learnt how to hold objects with her little hand. These massive milestones have closed the door on a chapter that, for me, started just over a year ago. It was a chapter I never saw coming and it was a chapter of worry.

All these wonderful changes have got me thinking back to the old me; large, pregnant and beside herself with fears and emotions she didn’t even understand. Now that I’m here, I wish I could reach back over the past year, back to the Spring of 2016, and tell my old self some things. Some things I know that she wouldn’t be ready to hear just then, but that she would be ready one day, in the not too distant future.

  1. You won’t regret your choices.

For the rest of your pregnancy, you won’t shake the notion that there could be something else wrong with your baby, something they haven’t picked up on the endless scans. All these scans (you’ll lose count of how many by the end, but it’ll be somewhere near 20) tell you that the doctors think there might be something else to find. Each time you go for another scan the news will be different, one day she’ll be too small, one day she’ll be fine, one day her arm will be tiny, the next day it won’t. Worst of all, these scans are happening because you rejected one invasive but conclusive test. When you’ve been told your baby is 1 in 32,000, the 1 in 100 odds of a miscarriage caused by an amnio test seem frighteningly high. Despite all the subsequent investigations, scans and consultant visits, you won’t regret not having that test. You know it could have taken away much of your stress just like that, but right from the moment you first saw her jumping about on the screen, your baby’s safety was and always will be worth far more than your own fear and worry. You are right to follow your instincts, they are the best and most comprehensive parenting resource you’ll ever have.

  1. The emotions you’re feeling now are ok. 

You’re new to this whole limb difference thing, you’ve never even seen anyone with a limb difference before. You’re about as limb different unaware as it’s possible to be. You don’t know what’s in store. Your mind is full of all the other ‘what ifs’ and near misses. You’re terrified that your daughter will struggle through life. You’re devastated to think of the challenges she might face, both socially and physically. And yet you spend so much time feeling guilty for how you feel. Compounded over and over by well-meaning comments. They’re trying to make light of the situation for you, but you’ll feel sometimes that your emotions are being undermined. You will come to understand all of the things they’re saying to you, but you’re not quite ready yet. You’ll learn that the only people who can really relate to you are other parents in the limb different community. Find them, join them and talk to them; they will understand what you are going through better than you do yourself right now (you can check out our links page for some fantastic resources and blogs). You’ll keep comparing your own worries to those of others. You certainly know how much worse it could have been. You’ll worry that because your problems aren’t as severe as others that they’re not worth a damn. Let me tell you now, even though you’ll carry on doing it, that you should not compare. Some people have things far worse, challenges far greater and higher mountains to scale. Likewise, some have things a little easier. Neither side of the equation invalidates how you’re feeling right now. Right now it’s ok for you to fear the unknown and for you to be a little heart broken for your baby. You’ll trawl the Internet for information and you won’t be ready just now to hear the positive news from parents all around the world, but you will be soon.

  1. Telling people is absolutely the right thing to do.

You’ve agonised whether to ‘announce’ to your friends and family that your baby will be born with a difference. Right now it feels like the biggest thing in the world to you. Maybe to others it’s not so huge, even to you, just a year from now, her difference will hardly matter. But right now, at this very moment, it’s pretty huge. Telling people will end up giving you the chance to celebrate her birth without worrying about their reactions. It’ll ease your anxiety once people know. When she’s born, all you’ll see on their faces will be joy and love and happiness. Telling people now will allow you to make the most of those precious months of knowledge that you were given. So many are shocked to discover their baby’s difference at birth. You’ve been given the gift of knowledge; use it in whichever way is right for you.

  1. When you get to meet her for the first time you’ll relax, but only a little bit. 

You will be so utterly relieved in the wake of her birth that her time in intensive care will not stress you out as much as you’d expect. You’ll know that she’s going to be ok. You’ll know she’s safe. You’ll know she’ll be well. However, all that relief and joy won’t quite mask that residual underlying fear. You’ll still worry. You’ll hold your breath every time you spot another consultant around her cot and you’ll chew on your nails whenever you receive a hospital appointment for her in those early months. You’ll feel fraught when she refuses to gain weight and the consultants are looming yet again. You’ll still bristle a bit when people make light of her difference. You’ll still be caught unawares by the little break in your heart when she tries to hold your finger with a hand that isn’t there, or when you see her try to reach out for a second toy only to give up in disappointment. You’ll feel that way for a little while yet, but not forever.

  1. She will blow you away. Every single day she will make you proud. 

Once she’s home, you’ll watch her every movement, you’ll agonise over how she is using her little hand. You’ll fret that she isn’t using it. You’ll stress. You’ll encourage. You’ll cheer. You’ll cry. Then one day, around about a year from now, all that will change. Around about a year from now she’ll climb up onto her knees and she’ll crawl. She might have a few bruises on her head where she’s toppled over her little hand. But you know what, she toppled over and then she got up. Again and again, she got up. This moment will close the chapter on your worry. It’ll close the chapter on your fears for her future and there you will be, sitting beside those other proud parents of limb different kids, and you’ll know in your heart of hearts that she’s going to be ok. You’ll at last understand what they’ve been telling you all along. That one simple act of moving herself forward across the floor, of getting bored almost instantly of the crawl and pulling her self up to stand instead, will change your world. Those two little milestones will shout and scream to you that there is simply nothing this kid won’t be able to do. She wants to play hockey, like her Dad? She’ll make that happen. She wants to turn cartwheels across the floor? No problem. She’ll find a way with your help if need be, but she’ll probably neither need nor want it. You’ll turn around one time and there she’ll be, sat on the floor, holding onto two toys. Two of them. One will be clamped in her fist the other tucked against her body with her little hand. And she’ll have no idea how intense and all consuming your pride is, how immense your relief and how great your joy, at seeing this one seemingly insignificant act. She’s showing and telling you, with every new thing she learns, that she is going to be A-Ok and that it’s time for you to stop worrying.

Listen to her: she’s right.

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One hand, two toys!

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Handy Hint: Handsocks rock!

Handy Hint: Handsocks rock!

People have been turning socks into hand puppets for decades, maybe even centuries, but there’s been something of a hand/sock revelation of late: Handsocks officially rock!

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Born from the combination of a superbly simple idea and cold little hands on a skiing holiday, Virginia-based inventor Casey Bunn, has answered the needs of a great many parents and all sorts of kids around the world!

Billed as the perfect mitten to stop little ones scratching and designed to help youngsters through skin conditions, illnesses and operations, Handsocks could also be a dream come true for parents of limb different littlies.

Last winter, I tried countless pairs of mittens on Hero’s little hand in the hopes of finding something – anything – that would stay on. With no palm, her little hand narrows past the wrist and therefore has nothing for a mitten or a glove to hang on to. We ended up just rolling sleeves over her lucky fin and tucking it under blankets to keep it warm, which is no good for babies who want to wave and explore rather than be swaddled!

Now, just in time for a change in the wonderfully indecisive British Spring weather and under the threat of impending snow (Winter is Coming…. Back), we have finally discovered Handsocks!

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They fold over the end of her big hand, keeping little fingers warm and snug and they stay, with ne’er a slip, on her lucky fin. Even better, you can roll back the soft and cosy mitten exterior so that she can have her hands free without having to strip off her Handsocks – perfect for outside explorations in the chilly weather.

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They come in a variety of sizes and styles and Hero is fitting comfortably in the 0-3 month size, giving her a whole lot of growing room into the larger sizes. I think she’ll be decked out in Handsocks for years to come!

 

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