I thought that Hero’s first birthday would mark some kind of huge emotional landmark for us, at least where her little hand was concerned, but I never had that lightning bolt moment. However, now that she’s fourteen months old something feels like it’s finally falling into place.

There have been many points over the past year or so where I’ve thought that I was totally at peace with her limb difference. There were times when I thought it didn’t bother me any more, only to find the odd little spanner being flung into the works, be that unsavoury characters at a road side restaurant or an insensitive comment thrown our way. Now I’ve realised that emotions aren’t a one-way street, where all you can possibly do is go forward. Mostly, you’re headed in the right direction, but every so often you might hit a bit of a pothole. Happily for us right now, we’re cruising in the right direction on a currently smooth and empty road.

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The king of the swingers, oh, the jungle VIP!

A change of perspective

This time last year I simultaneously craved and loathed medical appointments for Hero. I craved them because I still wanted something to be done for her. I don’t know what I hoped that ‘something’ would be, but with all the appointments we were having surely there was a specialist somewhere that could “fix” this. We were referred to both orthopaedic and to plastic surgeons within the first three months of her life, one of them must surely have the answer. When each appointment letter came through, none them requested by us, my expectations would start to rise, even if I didn’t realise it at the time. I would be snappy and waspish in the waiting rooms and I would march into the meetings like I was preparing to do battle. Yet, each time they said there was simply nothing to be done.

I knew there was nothing to be done. Short of reversing time and repairing whatever kink in the development stages resulted in her missing hand, there is simply nothing to be done. I knew that. Yet it still angered me each time we were told the same. I was frustrated at having numerous referrals, which built up a sense of tension and expectation, only to be let down each time and reminded again that there was nothing to be done.

A year later and we’ve been told there is another referral in the pipeline sending us back to the gloriously insensitive plastic surgeon who had been so frustrating in the early days. A year ago I would have clung to that appointment, unconsciously hoping still for that something unknown. Yet this time I just grimaced at the letter and wondered why on earth we are heading back down that path. Only this time my reaction wasn’t bourn from a sense of pointlessness, a sense of ‘there’s nothing they can do’. This time my disinterest is because there’s nothing they should do. This tenacious, problem-solving and downright clever kid, just doesn’t need anything. She doesn’t need help. She doesn’t need adaptations. She doesn’t need to be fixed because nothing is broken.

I’ve had a year now of watching her smash through her milestones, of finding out her own ways of getting things done. You can’t watch Hero in action and genuinely think there is a problem to be fixed.  She’ll spend over twenty minutes trying to clip a harness together, never giving up or getting angry. She’ll keep working those Duplo blocks until she can hold them in just the right position with her little arm to be able to clip them together before pulling them apart again. This kid is walking everywhere and carrying things as she goes, something in each arm.

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All hail the Duplo Master!

This girl doesn’t need to see a plastic surgeon and, at last, her mother doesn’t need her to either. Realising this was the landmark moment I’d been waiting for. Here is that moment: She’s ok and I think I’m ok too.

The new normal

Meanwhile, Hero also has her first appointment at our local limb centre this week. Unlike the trips to surgeons that she doesn’t need, I’m genuinely excited about this one. Not because I’m expecting anything more than a meet and greet, nor because I want anything more than that. I’m excited because this isn’t going to be like the other appointments. Annual visits to the limb centre will be our new normal. These are the people who will be making sure her little hand is growing as it should be. These are the people who will craft her first bike adaptation to stop her messing up her back by leaning on different length arms. These are the people who, a few years from now, might help her find a way of playing the violin with her dad and of joining us both on the archery field.  These are the people who will help her to do whatever she wants to do, on her terms and when she wants it, with no promises or expectations of changing her. In short, these are the appointments we want, the appointments we didn’t even know we needed a year ago. These appointments are all about acceptance and embracing things as the normal, the everyday and the downright amazing.

Monkeying around

There was another landmark moment this week that took me all the way back to one of my first blog posts: ‘Trying to find a little peace of mind’. In that post I was frightened as hell about this journey we were on. I listed a number of thoughts that, at the time, caused me a lot of heartache. I’d like to reach back through time and tell myself how it’s actually going to be. So far none of those fears have been realised. Not one. Not even a little bit. Of course, we’ve had a few difficult bumps in the road, and I’m sure we’ll have more to come, but that is all they are: bumps. They’re no longer insurmountable mountains, they’re no longer blocking our way.

One of the things I worried about back then was that we wouldn’t be able to both hold  her hands at the same time, that we’d not be able to stand side by side and swing her up into the air between us. I just couldn’t see it then, as ridiculous and laughable as it sounds to me now. And as if to prove a point (long may she continue to do so!) Hero was having an absolute blast this weekend being swung high into the air between her dad and her gramps, loving every single moment and not even knowing that she was defying all of our fears.

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#LuckyFinsRock #ItsAbilityNotDisabilityThatMatters

5 thoughts on “Myth busting: Last year’s fears

  1. Another brilliant read. Well done Ames and well done to the remarkable truly inspirational Hero. Love to you all. ❤️💙❤️👨‍👩‍👧

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  2. You are amazing – both of you; all three of you. Your positive attitude , the love from you and ben and the determination of the little madam herself are wonderful. Love to you all

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  3. Lovely to read and know all is progressing beautifully, your honesty and patience are clearly helping you all, love your blogs Amy, best wishes for another inspirational year ahead for Hero and her Mum and Dad. 💖

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