Levelling up our limb-difference comfort zone

Levelling up our limb-difference comfort zone

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

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

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

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The golden years

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

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Then gymnastics happened.

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

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

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

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

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

 

Your hands don’t fit here

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

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

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

 

Shaking the boundaries

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

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

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

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

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

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

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

 

 

 

 

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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Please don’t feel ashamed of my daughter’s difference

Please don’t feel ashamed of my daughter’s difference

Christmas time is synonymous with crafting when you have a young child or a toddler. Making paper chains, baking festive cookies or making the obligatory hand and foot print Christmas cards for the family.

I had a lot of fun this year working out how to incorporate both Hero’s left hand and her lucky fin in her handprint Christmas cards. Looking at the shape of her gorgeous little nubbins (I still don’t like that word, but neither have I found a better alternative!) I decided that her little handprint would make an excellent crown. Embellished with my appallingly childish artwork (I can’t wait for her to be old enough to draw for herself) we put three lucky fin prints, side by side, and lo! The Three Kings were crowned. Her left hand then took the place of the star. It looked really quite cute, until I tried to add the rest of the detail, that is!

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I haven’t done art since year 9….

We also attended a festive craft session for the under fives in the weeks before Christmas. Of course, no Christmas craft session would be complete without turning your handprints into Reindeer antlers! When I came to collect her I couldn’t help but notice that everybody else’s reindeer had a left and a right hand print atop their heads. Hero’s had two lefts. That made perfect sense to me. I’d obviously have preferred a lucky fin reindeer, but I felt that the minor ruffling of my feathers probably had more to do with my own sensitivity than with the choice they’d made to only use one of her hands.

However, as I was chatting with the leader afterwards, I admired the artwork they’d done with the toddlers and he said to me:

“We decided to do Hero’s with just her left hand as we weren’t sure if you’d want her other one printed.”

He said it with genuine concern. I smiled and laughed, as is my go-to reaction in these situations and I reassured him that we loved both her handprints. I told him all about our own Christmas card adventures. Despite leaving the group a happy bunny,  the comment turned out to be one of those insidious thoughts that return to you again and again long after the conversation has ended. I’m always a bit of delayed processor of emotions, but by the time I’d gotten home I was feeling the hurt. I was just crushed by the idea that her little hand could somehow be something shameful and that her own parents might not want to see artwork with it on.

Now please be assured, I know with all my heart that that certainly wasn’t the intent of the leader’s decision. But I wasn’t preoccupied with the intent; I was preoccupied with the message that a decision like that might send to my increasingly aware daughter. A message that said: “You’re different, and we should probably hide that.”

If I’ve learned anything over the past two years, from our twenty-week scan to the running toddler I have before me now, it’s that being different really is awesome. I’m fiercely proud of Hero’s uniqueness, her abilities that blow us away every day, and I can only hope and pray that one day she will feel the same way too.

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My favourite piece of artwork Hero made at a baby group last year 💖

Parenting is all about learning on the job. Add a difference or a disability into the mix and that sense of flying by the seat of your pants is increased. We’re not only getting to grips with our ever-changing child, but we’re also learning all about a world of different abilities that we knew nothing about before. I’ve learned from my chat with the craft leader that maybe I shouldn’t assume that everyone else has the same levels of confidence and comfort around her difference.

I now know that the message I need to spread to her future teachers and caregivers is: please don’t be ashamed of my daughter’s difference. Instead, celebrate it. Celebrate it in artwork that is as one-of-a-kind as she is. If that means her reindeer has wonky antlers, then rest assured that that’s the only reindeer her parents really want to pin on their wall. The reindeer that is as special as she is! And if you still have any doubt at all: ask! Don’t ever be afraid to ask. The differences of our children aren’t as new to us as they might be to you, and we’re highly unlikely to be offended by any kind of polite curiosity. And, while I’m not speaking for every parent of a child with a difference out there, I’m speaking for myself and maybe even for a few more: Celebrate, ask and then celebrate them some more!

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This is my favourite quote. It’s from the wonderful creator of the awesome Lucky Fin Project and it couldn’t be more true than in this situation.

 

 

 

 

Learning a limb-different language: Part 2

Learning a limb-different language: Part 2

Yesterday our lucky fin baby worked out that she could move herself across the floor. At the moment her arms are more engaged with the world than her legs are, so there’s a lot of shuffling backwards and confused expressions while she tries to work out why the toy in front of her is getting further away despite all her efforts. I simply love the fact that I’d heard a few people tell me not to worry if she doesn’t meet her milestones on time. And here she is, using both her arms to shuffle herself across the floor! I’m torn between thinking this is the best thing ever, and wishing she’d stop growing up quite so fast and would always stay my little baby. Either way, I think it’s time to start putting the house on lockdown…

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*BEEP* Stand well clear; baby reversing. *BEEP*

In the meantime, I’m having to start being a bit careful about what I say. Language is something I’ve not thought about much since the early days after her birth. Back then I felt completely sensitive to everything and a round of “if you’re happy and you know it clap your hands” sent me into an emotional tizz. I now have only very mild flutters when I hear that song, and no issue at all with the phrase: “That’s handy!” or any other reference of the like. Isn’t it funny how things, that once seemed so important, just pale into insignificance with time?

The one word I still cannot abide in reference to Hero’s lucky fin (and suspect I never will), however, is ‘stump’. I can’t fully explain why I dislike it so much and it’s unfortunate that it’s a word my husband chooses to use often when referring to her hand (although he’s getting much better!). It’s a sure fire way to kill any joke when I’m in the room and you might need to be careful discussing the remnants of felled trees around me too as, even when completely unrelated, it still makes me flinch. How odd that such an innocuous word can conjure up such intense feelings of protection and make my mother lion hackles go up like a shot. Go figure.

It swings both ways, however, and there’s one phrase that I’ve used a lot over the last six months that my husband doesn’t approve of. It’s the complaint of parents of young babies everywhere: “I can’t do that, I’ve only got one hand.” Being encumbered with a baby, especially one of the clingy variety, can make carrying out everyday tasks tricky when you’re not used to doing things one-handed. I’ve even read a few blog posts about the subject. But stating that, in front of a wholly competent baby who’s apparently on the verge of crawling, does seem a little churlish. Is that the language we want her to adopt? A steady stream of ‘I can’ts’?

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#tenfingersareoverrated because I most definitely can!

It’s time to take ownership of some of the things I say. It might not be offensive, it might even be true (it certainly is trickier getting stuff done as a two-handed person when you find yourself without the use of one). But there’s no escaping the fact that I’m making excuses we’d rather she didn’t make. Sometimes that ‘excuse’ will be appropriate for her, maybe even necessary. But we’d like her to be thinking about what she can do, not talking about what she can’t. On this one the husband might be right, Mummy might need to cut the ‘I can’t’ crap, but that doesn’t mean he can’t still bring her a drink and a snack from time to time!

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.

The lucky fin, the stitch and the wardrobe

The lucky fin, the stitch and the wardrobe

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

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

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

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The dreaded roll-back

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

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

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

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

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