“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.

 

 

 

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