Something happened this weekend that, while seemingly insignificant, to me feels like a huge leap in to thus-far unchartered territory. It feels like a loss of innocence and naivety, which I was hoping to cling to for a little longer.

Hero turned around to me, entirely out of the blue, and pointed to her little hand saying, “baby”. She then tapped her left hand and said, “mummy”.

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Introducing Baby Hand and Mummy Hand

Now, in her world at the moment every single thing fits into the Mummy, Daddy or Baby categories. If it’s small, it’s a baby one, if it’s big its either Mummy or Daddy. This categorisation will apply to everything and anything from leaves, to stones, to sticks, to animals, cars and people. It can be a little embarrassing as she shouts “Daddy!” at almost every random male we pass. “Yes, Hero, that might well be a daddy. It’s not your daddy though!”

A growing awareness

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The 40th Reach AGM and Family Weekend

It’s no coincidence that Hero’s announcement about her hands came when it did, as we spent the weekend with Reach families from across the country celebrating the charity’s 40th AGM and Family Weekend. While the adults laughed and cried our way through the conference, packed full of inspirational and fascinating people including speakers from the fields of specialist hand surgery, neuroplasticity research and TV comedy, Hero was in the Reach crèche run by the ever-awesome team at Freedom Childcare.

I wrote last year about what an odd experience it is dropping Hero off at the Reach crèche. At any other childcare facility or toddler group, experience has told me that she will stand out from the crowd and that, whatever she’s doing, she’ll be noticed (the loss of anonymity that having a physical difference brings was brought up in one of the conference talks, to many understanding nods from the delegates.). But at the Reach family weekend things are different, she joins a whole cohort of limb-different kids and, for a rare day, she’s not going to stand out. She’s one of them and she fits right in.

An unsurprising surprise

While the adults are all learning how our children’s brains might be compensating for their missing limbs and are weeping our way through tales of victories and success from across the limb-different community, it probably shouldn’t come as a surprise that the children are discussing their differences too.

Yet despite this, despite spending the weekend surrounded by limb differences, her pronouncement still came as a shock to me and, I won’t lie, a bit of a heart aching blow. Since her birth, Hero has shown us that her brain knows there’s a difference in her hands – despite what well-wishers might tell us. We’ve watched her try to use her right hand as if it were a fully functioning, five-fingered limb. But what she’s not been aware of is her own difference compared to those around her.

She has never looked at her hands and compared them to her peers, or even to ours as parents. She’s been blissfully, naively unaware that there is anything about her that is different from anyone else.  I’ve said in the past that I think, in some ways, these years have been golden ones. These are the years where her confidence can’t be damaged by her difference, these have been the years when she doesn’t notice if someone is staring or asking questions. These are the years where, to her eyes, she unconditionally fits in.

Her identification of her hands as a ‘baby’ and a ‘mummy’ hand feels like the beginning of the end of those golden years, like the start of something new. It feels a little like her innocence at the world and its judgements are starting to erode away and she will be left more exposed and vulnerable to people’s judgements and opinions.

Please don’t get me wrong, I don’t believe that the end of these golden years of innocence means that her life will inevitably be difficult and a hard from now on – far from it. It’s simply that, over the past years my concerns for Hero have changed from things I thought she wouldn’t be able to do (what a joke!) to how she will cope socially with her difference. What will it be like when she starts school? How will her nursery help her to deal with questions or attention from other kids? What will happen to her self-esteem when she first acknowledges a rude stare or unkind comment?

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Rugby? No problem!

Their hard-earned confidence

The adult Reach members who speak at our family weekends are inspirational, truly. They are athletes, professionals, actors, comedians… they are successful, they are confident in their own bodies. But many of them tell the same story; they tell of the troughs they fell into, they tell of the hurdles they had to overcome in order to be – and to love – who they are today. They tell of the insecurity, and of the fear they battled through to win their hard-earned confidence.

Suddenly, her identification of her difference, while representing an exciting leap in her understanding and awareness, also feels like an opening of a door or a shedding of her armour that will leave her more exposed to knocks in her currently unshakable confidence.

As parents we would do anything and everything to ensure our child felt safe, confident and loved. Yet a physical difference is something that we simply can’t do anything about. If she’s struggling in school I can get her extra help, if she’s struggling with friendships I can support her in building bridges. But I can’t give her a hand. I can’t take away the one difference that she might want to be rid of in the future. I can’t answer the inevitable question of, “when will my little hand grow?” with anything other than a crushing finality. I can answer sensitively, supportively and compassionately even, but not untruthfully.

So for now, as we embark upon the terrible twos and navigate emotions she never even knew existed before, both she and her parents are entering a new era. It’s a era of public tantrums, of our small person learning to express herself. But it’s also an era of new discoveries. An era of learning to understand her physical difference, of noticing when others notice. We’re entering an era when how we react and how we respond will be crucial in helping her to maintain her self confidence and self belief in a world that’s suddenly starting to look very different not only to her, but to us too.

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Breaking out the moves on the dance floor at the 40th Anniversary Reach family ball 🕺

4 thoughts on “Identifying the difference: a new era

  1. You seem to have started and have a feeling you will continue to do a beautiful job equipping her with the words and insights to navigate a life with a limb difference. As a fellow mother of a 25 yeaer old with a limb difference, as that little person and personality develops, there is so much that you see when you look at them beyond the limb. It takes a little time but how glorious when someone they have known for months says, “I can’t believe I didn’t even notice!”

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  2. I was moved and very impressed by all you wrote. You and Ben have a difficult time coming, but keep on the way you have done so far and life will be rewarding for all the family. Hugs to Hero

    Like

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