Sometimes you just want to ask...
Hi - I'm Jane and I'm Tommy and LJ's Grandma - or Mamma as they call me. This page is just my thoughts, my hopes my fears, questions I've asked, things I wish I'd know ...basically just a place for you to hopefully read and think - Yes I wish i'd known that or thank goodness it's not just me. I have my own blog where I discuss a variety of things many of which are based around limb difference. If you want to get in touch please do - you can comment below or I'm @janeh271 on twitter. I've copied a couple of my blog posts below.
Published 1st April 2017 - Limb Difference Awareness Month
April is limb difference awareness month and combined with this photo of Tommy from yesterday I’ve been spurred to write. Tommy is a mischievous, bubbly two year old who meets life head on. He bursts into our kitchen with the door rattling on its hinges and announces gleefully ‘I’m back’. He is a confident and happy child for whom life is an adventure. Yesterday I took hundreds of photos of him and his sister LJ as they played in the garden. Although there are loads of images of Tommy this one really struck me. Not because of any technical quality in the photo but because it shows a child who is happy in his own skin. He’s content, he’s holding his bucket with his little arm, life is just what he makes it. It’s not a struggle it’s just the way he does things.
The quote below is from the inspirational Molly Stapleton founder of the Lucky Fin Project Lucky Fin Project
A child being born with a limb difference is not tragic. It’s extremely important to show our children how capable & 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.
I’m so proud of my son and daughter-in- law for the way in which they have always supported Tommy. He’s never mollycoddled he’s just loved. Each week brings a new challenge, toilet training is different as Tommy has to learn to leave time for him to take his trousers off, planting seeds is fun but he wants to wear grandma’s gardening gloves, riding his bike means leaning forward to hold the handle bar, spreading butter on his toast is a bit hit and miss at the minute but it’s all a learning curve.
His little sister copies him, they are inseparable and he is alternately her protector and tormentor – it’s ok she’s a feisty little thing!
This post is meant as a celebration for all those who have limb differences and for their families who give them the self belief they need.
Things I would like you to know ... April 2021
Let me give you an example. We were (pre covid) sitting outside a cafe eating ice cream when I realised that LJ was ‘interested’ in ‘something’ which was behind me . The question wasn’t long in coming nor was it said quietly ‘Mama why has that man got a big yellow egg on his head?’
I’ll be honest – I was wary of turning around but knew I couldn’t ignore it. I breathed a sigh of relief when I turned round to see a Sikh gentleman wearing a bright yellow turban. He obviously heard and was looking our way.
LJ wasn’t being unkind – she had just never seen a turban before. In attempt to ‘practice what I preach’ -I walked over, introduced us and explained LJ’s fascination. The gentleman could not have been kinder and explained it was his ‘special hat’ – lots of smiles all round, no embarrassment and LJ skipped happily back to her ice cream.
The reason I’ve shared that story is because that is what it is like when we are out with Tommy. If your child (and often adults too) haven’t seen anyone with a limb difference they will be curious and ask. That’s ok – it’s fine to talk and ask please don’t ‘shh’ your child.
Its also a bit of a balancing act as remember Tommy gets this question regularly and sometimes he doesn’t want to talk. The book 'What happened to you' is brilliant – if you have or work with children I’d really recommend it.
Children have a innate thirst for knowledge and understanding. That’s not me quoting science or research. That’s me as a very tired grandma (mama) who has spent lots of happy hours with two of her grandchildren this Easter.
I have answered questions ranging from ‘what does several mean? What does an Octopus eat and where has Granddad Jim actually gone? ‘(my dad aka Granddad Jim died in September and they understand that but want to know where he is now?)
We encourage questions, they are natural and it’s how they learn and develop as people. I understand that if they see something they haven’t seen before they will be curious, they will look and they will ask. It’s my role as a grandma to try and answer these as honestly and as sensitively as I can. This isn’t always easy or straight forward!
It got me thinking about the sort of things Tommy has to answer all the time so I’ve shared some here
Things I’d like you to know.
I have a limb difference I don’t have a right hand and part of my arm is missing – I call it my little arm.
My friends call it my ‘born arm’ because that’s how I explain it to them.
Please don’t call it my poorly arm – there is nothing wrong with it.
It doesn’t hurt – it won’t grow back.
My little arm has a smiley face on the end which wiggles when I wave my arm.
It helps me to know left and right as I can make a ‘r’ with my little arm when I bend it.
I can do most things so you don’t need to do them for me – if I need some help I will let you know
I’ve worked out how to do things my way – I can’t do finger spaces when writing, so my dad made me a special stick to use.
I can’t hold up both hands showing you the answer to 3+4 is 7 so my teacher made me a separate lolly stick hand to hold up,
Sometimes it’s hard to get my shoes on it I’ve learnt to use a shoe horn.
I will always find my way of doing something.
My writing looks a bit messy as my grandma thinks I would have been right handed and that’s the one that’s missing but that’s ok – I keep trying and I’m getting better.
My friend E always holds my little arm when we are walking, I like that.
My little arm is actually very useful- I can make holes in soil with it when I’m planting seeds, I can hold a toilet roll on the end of it when I’m painting it.
I love to paint my hand prints – they might look different to yours but that doesn’t upset me – so please don’t make me print my big arm twice
I do have special arms, a Batman one and a blaze and the monster machine one, a mitt arm that has different bits like a pen holder, a knife holder. Sometimes I wear them, sometimes I don’t – it depends what I feel like.
It’s ok to ask about my arm...once. I’ll explain it to you but then I’m just Tommy. I’m not Tommy with one arm, Tommy with the missing hand. I’m just Tommy
I’ll finish with the look that says – really mama – no more photos Love him!