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Letting go -have we done enough…

At the age of 4 years and 1 month Tommy D started school 3 weeks ago. To say I was worried would be a massive understatement. I would no longer be able to soften the harsh stares and deflect questions about his arm, all I could do was hope we had done enough in giving him the skills to deal with things himself. Then I’d remember he’s only 4 and another wave of fear would wash over me. Would the school work with us or insist he conformed – would they smother him with kindness and thereby halt his progress by doing everything for him or would they follow our lead?
I had many sleepless nights but stepping back and trying to be objective ( not an easy task for a grandma) I could see that Tommy had grown in confidence. On a recent visit to feed the ducks he and LJ were running ahead – I shouted for him to slow down and wait. His response- ‘it’s only a hill mamma it will be fine’ I let them go and they obviously both fell over! BUT they laughed, dusted themselves off and carried on running.
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There have been times recently when Tommy has said ‘I think I need a little bit of help with this’ and has directed me to hold a parcel still whilst he pulls the tab to open it. Over the Summer he met lots of other children with limb differences through our charity LimbBo Foundation, so he knows there are others just like him but as September drew nearer there were still nagging doubts.
We built school up as exciting and held our breath as his first day arrived! The following are the posts written by my daughter in law following his first two days – tears of relief tears of pride and breathe!
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I’v realised how amazing my boy is so this morning I sent him to school for his first day , spent all day worrying. Normally I don’t but big schools a big day for any kid ,never mind a limb different kid. Trying to make friends but having to explain his arm to a lot of new people . I’v seen how older children behave with Tommy in the past (it wasn’t very nice) so today’s been the first day out of his little bubble he’s had for the past 3 years . I was definitely very nervous . Coming home we asked how his day was ,he was quiet but said what he had done, said he had made a friend called Alfie and he had a good day. So we got home and I thought  do I ask the dreaded question . So I did “ So Tommy at school did any boys or girls say anything about your arm” “yes mummy they said why is my arm been cut off” yes I was expecting that but I didn’t expect Tommy’s response “I said I was born like this ,when I was a baby” then he said quietly I’m special and smiled  he makes me so proud, well done my big boy 
So day two at school for Tommy … I have gained a accident form and lost a jumper  on the plus side his teacher said today she sat , watching the kids with Tommy and his arm . She said he made her nearly cry . She’s decided he’s doing an amazing job explaining and he’s so confident, he’s doing such a good job she’s stepping back and letting him explain
I’m so pleased we chose this school, the staff work with us, they now understand how much Tommy can do for himself. I was over the moon to hear the Senco say she was out of her depth as Tommy was the first limb different child they had come into contact with and would take her lead from us and other specialists such as OH.
Yesterday Tommy ran into school holding hands with his new friend Grace. His water bottle slipped from under his little arm but Grace just picked it up and tucked it back again. Kids are just wonderful aren’t they?
The fears have been abated for now, Tommy loves school especially the wheelbarrows and the bricks, he comes home full of sounds he’s learnt and covered in the remains of his lunch. Long may his smiles continue.
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Tommy and LJ walk home from school

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Jewellery for LimbBo Foundation

Those of you who know me well are used to seeing me ‘play’ with a variety of creative ideas. I love trying anything new be it making baby shoes or freezing flowers, I’ll give it a go. My latest addiction is ‘Acrylic pouring’ – this is so so messy and so amazingly therapeutic. You can’t completely control your result and you never know what you are going to get.

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I was introduced to this art form by a wonderful friend Pamela Sanders – check out her page – she is way out of my league as an artist but she’s a great teacher (Kingstone friends she’s also Sharon’s sister!)

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My other loves are my gorgeous grandchildren (Tommy, LJ and Joseph just make me smile). Again, if you follow me you will know that Tommy is the inspiration behind  the  LimbBo Foundation which we formed to raise awareness of limb differences and support these children and their families. In an attempt to combine my loves I’m making jewellery using acrylic pouring and hoping to sell these necklaces and bracelets to donate the profits   to Limbbo. Some of my friends were kind enough to say they might be interested – hence this post.

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Each necklace is completely unique (I couldn’t make two the same even if I tried!)

They are £10 each plus £1 postage but I can reduce the price if you buy more than one. There are various ‘colour ranges’, Earth tones, Black and white, brights, pink and grey … all come with a soft suede type fastening/string  in a variety of colours – I just add which colour I think works but am happy to add a specific colour if you wish.

If you are one of my Barnsley friends, I’ll throw in a free coffee and biscuit if you want to come and have a look 🙂

Please message me if you are interested either on here or via twitter/instagram @janeh271

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I gave the limbBo mums one of these at our meet up last week – thanks to Bianca for allowing me to use her photo.

Her’s my amazing Tommy D making his own painting which has pride of place on my kitchen wall.

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Hope to chat to some of you soon. x

LimbBo Foundation meet up

museumMy eyes won’t stop dripping – is the phrase Tommy uses to explain to me why he’s crying. Well my eyes have been really dripping this week. I am so proud of my little inspiration and his sister ( his parents make me cry too!). A group of limb different children and their families showed us what positive thinking, love, and a bit of ingenuity can do. Watching two 4 year olds high five one another with their ‘little arms’, seeing children with one hand swinging on apparatus, watching fireman bend down and hold hoses so these children can do it themselves. Laughter, friendships formed, questions asked, hopes and fears shared. People giving up their time to share their experiences, genuine smiles from complete strangers as opposed to the stares we sometimes get. We were loud, proud and not easy to miss. These children had ‘found their tribe’ and it showed in the beams on their faces.
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Reading feedback on the day led to even more eye dripping.
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We thanked blue watch at Parkway @syfr for making our children feel special, for playing with them ( not to mention all thoughtful touches – a fire engine from the emergency museuem in Sheffield driven by a volunteer – Bob, so they could have a ride in a real fire engine, sweets to take with them to see Paw Patrol, not to mention the bag of doughnuts and cookies that appeared in the middle of the afternoon ( think that was Ljs favourite bit) ) for making them giggle, just priceless to watch.
All of this captured on video by Josh from Walnut Creative who have supported us since we formed LimbBo.

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My overriding feeling from the day was just the sheer kindness we were shown by everyone. It is so important for these limb different child and their siblings to realise that yes they are different but differences can be celebrated and not just seen as a problem. Tommy’s favourite saying is ‘I can do it’ and do you know what – he can.
LimbBo will continue us to grow, we will continue to spread our message – our book is available from our website, we continue to create 3 D printed arms, with support from Team Unlimbited and there will be more get togethers ( no Katie I still won’t go camping).
I’m making jewellery to raise funds – quick preview here and I’ll blog about that later this week – think Christmas presents everyone 😃its been an amazing 5 months so a huge thank you to everyone who has supported us so far x
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Life lessons from a 2 year old

My granddaughter LJ is my inspiration. She meets life head on and on her own terms. This morning we went to a pottery painting session. (Thank you @lescadeauxgifts )

The paints were a wonderful array of pastel colours in a circular palette. LJ started with one colour then decided that she wanted to use them all at once. She dipped her paint brush in each one and mixed – the resulting muddy brown may not have been my first choice but she was beaming. Covered her ‘bunny rabbit’ in it, clapped her hands and wandered off in search of another bun.

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I want to be #morelikeLJ

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My aims for this summer are:

  • Stop saying sorry
  • Remember I am not responsible for other people – I can support but ultimately they are responsible for themsleves
  • If I’m happy with something and I’ve done my best I’m not going to worry about what others might think.
  • I will plan my goals according to what I want to do (I’m 60 soon – surely almost ready for ‘I shall wear purple’)
  • Be kind – my grandmother taught me that and I aim to leave the same legacy to my 3 grandchildren.
  • If all else fails I will go and get another bun

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So this Summer I WILL be #morelikeLJ 

 

Growing up

Children don’t come with a manual. All children are unique and have their own strengths and areas where they need encouragement. We love them, we protect them and hopefully they thrive. We then have to give them the skills to cope on their own. My Tommy D is four next month and starts school in September. I’m heartbroken, he’s my Tommy, he’s too little, he’s too young … and breathe grandma! We’ve given him confidence, he’s been surrounded by love and now it’s almost time for him to be in situations where we can’t protect him from stares and occasional cruel or unthinking words.

We’ve been stressing the positives. We talk about his little arm and always have done but I think he now understands that he is ‘different’. Yesterday he said ‘LJ hasn’t got a little arm she’s got 2 big arms’.

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On one of his school visits a child asked what was wrong with his arm and his parent replied ‘he’s poorly’ – we don’t want him to think he’s ill or not normal so we stress how he can do anything but he has to find his own way to do it. My friend Nina (@musicmind) talks about #tommydcan and he really can, he’s inspirational. I think maybe we have overdone the positivity as on meeting new friends at the playground yesterday his opening gambit was ‘I’m Tommy, you want to see my little arm? Shall we build a tunnel’  Long may his confidence last.

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Nursery told us last week that when filling his water bottle another child had gone over to Tommy to do it for him. Tommy explained that ‘I can do it myself, I can use my little arm look’ I love his ‘can do’ attitude (just as well as he know we won’t do things for him that we know he is capable of doing himself)

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I’m heartened greatly by the young people I meet and those who have chosen to support LimbBo foundation (@lbofoundation) – Darton GCSE Art students who illustrated our book, the pupils at St Catherine’s in Sheffield where the student council are looking at our book and working out how to share it, Pupils at Hoyland Common primary who were amazed at the videos of Tommy and working out how his 3D printed arm works. Students at Flamborough Primary who have chosen LimbBo foundation as their Summer project. We want to spread the word that it’s OK to ask, that Tommy is ‘differently abled’ rather than ‘disabled’

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He is the most loving child and as his grandma (mamma) I’m incredibly proud of him and his little sister who I think will be lost when he starts school.

Until them remember #iftommycan then so can you 🙂

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Tommy’s story – the book

The LimbBo foundation continues to develop. 3D printed arms, a planned day out in August and a growing number of people following us and supporting us. 1 - 4

Our book is now in print!! Huge thanks to the year 10 GCSE group at Darton and my friend Amie, their teacher, for their illustrations, Photobox for agreeing to a bulk deal and various people who are ‘testing’ these out in schools.

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I took Tommy into Darton to deliver their copies and for 10 minutes we experienced what fame must feel like. Tommy’s photo has been literally plastered around school for weeks and so as we walked down the corridor (lunchtime – major error on my part!) pupils from all years ‘high fived’ Tommy or just shouted ‘Hiya Tommy’ – he was as bemused as I was but it was wonderful. We went into the Art room where Tommy was greeted with ‘his’ display – ‘Look Mamma it’s me’ – what a day – priceless. If we have done nothing else we have educated pupils here that Difference is OK and something to be embraced.

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The book is for sale on our website and hopefully we can get this into as many schools and nurseries as possible.

When we started this charity we had no idea how much support we would gain – friends, family, colleagues and people who were strangers a few weeks ago.

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A special warmth for me is that my son (who started the charity with his wife) was a pupil at the school where I taught so many of the people helping us are his friends, people I taught years ago – good to see the #Kingstonespirit lives on.

We have a lot of work to do but these are exciting times – if you want to follow us we are on Twitter, Instagram and Facebook too.

Jane x

 

Overwhelmed with kindness

Sometimes you know you need help. You know what your skill set is and, more importantly sometimes, what it isn’t. I have never been able to draw or paint – it’s one of the main reasons I took up photography.

The LimbBofoundation has come a long way in a short space of time and we have many projects ongoing. The book for children was an idea that we needed help to achieve. I’ve written the story and I have friends helping me to shape it. We put out an appeal for an artist to help us. Amie from Darton asked the question ‘why don’t you get pupils to illustrate it?’ Never one to miss out on an opportunity (and we love a good project!) I went into Darton College  to ask for help.

I was encouraged that the pupils all said yes of course we will help but had no idea what I would get. I left them with lots of photographs and the story outline.

I walked into Darton College today and burst into tears! Look what greeted me.

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Look how amazing and how thoughtful. A whole range of skills, ideas, understanding and a sea of smiling faces. These pupils are year 10! What can I say? Education is about educating the whole child – not a cliche in this case, these pupils have empathised and offered their skills. PicMonkey Collage

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I’m not sure yet how or where we will get this book edited – but I do know that we WILL.

(any offers of help gratefully received!) PicMonkey Collage2

Don’t be afraid to ask for help, often people will help willingly but don’t know what you need. Thank You Year 10 x

FINALLY …

Tommy can use a camera by himself. For a couple of years I’ve been campaigning -aka ‘banging on’ and moaning about the fact that there is no such thing as a left handed camera.  (You will find several blog posts on here 🙂 ) None of the major camera companies could help – they suggested remote releases or apps …and whilst I know these work Tommy is 3 and wants to run around and snap what he sees not set up a studio type shot.

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My son (obviously fed up of my moaning ) decided to sort it out for Tommy. With help and advice from friends, a 3D printer, lots of patience and a determination that #Tommycan take photos – the ‘LimbBo Cam buddy’ was created.

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Tommy can hold it easily in his left hand and still press the shutter – he literally squealed when he used it in a cafe and saw what he’d taken. So much so that people came to talk to us and ask what he was using.

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We can now have mama and Tommy camera sessions and he’s so proud of his shots. If you know any child who would benefit from this please contact https://www.limbbofoundation.co.uk/ and we can point you to the design which Adam has made ‘Open source’  . If you don’t have a 3D printer but have a child with a limb difference that would benefit then please get in touch.

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Just goes to show there ‘is always another way’ (@ITLWorldwide) and we can celebrate what #Tommycan do 

Sewing outside the lines

I’m reasonably new to sewing but health issues have forced me to slow down for a while. I need to have projects on the go, I need to create, I need to experiment. I attended a free motion embroidery class which led to the creation of ‘not the norm textiles ‘ with a friend and a series of portraits.

I then decided I needed to be able to sew straight lines which I found a lot more challenging than free motion. I made tissue holders (loads of them)- four straight lines and that’s it – result!
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I progressed to simple pouches/purses – definitely a bit hit and miss with the zippers 😂. I spent hours on Pinterest and worked out how to sew bags, tweaked the patterns and made most of my Christmas presents.
I’m not good at reading Instructions or following patterns – i.e I just don’t do it. Having worked out a basic bag pattern I decided to create a bag using just
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There are no rules I just put scraps of materials over one another and sewed, I used random machine stitches, different angles and whatever scraps I had. It was amazingly liberating, no pins, no straight lines no worries! This can then be cut to a rectangle and used as the front of your bag – here’s my first attempt at scrappy quilting aka sewing outside the lines.
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The kindness of strangers

I’m going through a difficult patch -‘It’s your age’ and ‘you’ll grow out of it’ were phrases my mum often used to say to me. At the moment they are making me smile as I definitely feel that my age and getting older is having an effect. I suddenly seem to have developed various minor ailments which have resulted in doctors visits and subsequent hospital visits. I’m ok but struggling. I’m fine but shattered.
Yesterday I had a biopsy on my tongue – yes it was scary and yes it was painful but due to the kindness of strangers I managed. I was on a day surgery ward where no visitors are allowed. At first we all sat in rows in our own little bubble of worry, expectant faces lifting every time a nurse or doctor appeared.

Gradually we began to chat and form our own little support unit, the elderly lady next to me squeezed my hand and said ‘good luck love’ when I was called. Complete strangers supporting each other.

I know I’m naive but I didn’t realise I would have to go to theatre – I lay there in my gown having my ID band checked and began to shake – sheer nerves. The nurse held my hand and didn’t let go until there was someone else to hold it. I daren’t open my eyes as they cut off a section of my tongue and stitched it back together, but all the time the nurse held my hand and squeezed. I felt safe and cared for, this was above what they are paid to do but that hand just held on and got me through. We talk glibly about giving others a helping hand but I will never forget their kindness.

My new friend reappeared in recovery and we chatted- I was happy to be able to return her kindness and find her husband to tell him how she was as I was released before her.

I can’t eat properly, I’m drinking copious amounts of coffee but am smiling at the kindness of strangers and thanking my lucky stars for our NHS x