Category Archives: Children

Limbbo Foundation launch

What a week! Those of you who know me or follow this blog will be familiar with my grandchildren Tommy and LJ. These two are ordinary, loving, often mischievous children who bring joy to so many.

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As you can see, Tommy has a limb difference and is ‘differently abled’. It was a shock when we found this out at Katie’s 12 week scan – my son and daughter – in – law are amazing – here is Adam’s account of that time. I’ve added a few photos and links but the words are my son’s.

During early pregnancy myself and my wife were given the devastating news that a complication had occurred and our baby was going to born missing a limb.

I’ll never forget the day we were sat having a normal baby scan, looking forward to seeing our beautiful baby again. The lovely chatty nurse paused and went quiet. I instinctively just thought she was just concentrating trying to find a better angle or whatever. The silence continued and she began to look concerned. She said quietly “I’ll just be a minute, I have to go got a colleague”. My heart sank, I tried to reassure my panicking wife that everything was ok…I knew it wasn’t. Another more senior looking nurse came in, she looked concerned, they talked quietly and the she left. The nurse turned to us and nervously said “I’m very sorry something is wrong with your baby.

That moment I’ve never felt pain quite like it, I didn’t know what to think, they explained that our baby we had tried for so long to have was going to be born disabled and missing a limb and could have potentially more problems.

Still crying and shook up we were ushered into a cramped little room, walking past the waiting room full of expectant parents who didn’t know where to look….i just wanted to run away.

We were given a basic black and white pamphlet of a generic limb difference which to be honest didn’t help one bit, it was dry and clinical. We were also given the option/possibility of abortion.

We left feeling numb and confused.

Well the rest is history, we went along with the pregnancy, and we are blessed with incredible courageous son, Tommy.

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We were helped by other fantastic charities and people such as the NEVER SAY NEVER FOUNDATION who helped Tommy attend a limb difference pirate camp, the work those guys do is simply unbelievable

Making friends at Pirate Camp Florida
Making friends at Pirate Camp Florida

 and Greg & Tori Lynch who built Tommy’s first ‘Buzz Arm’ and introduced me to prosthetics.

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We’d also like to thank to Lucky Fin Project for all of their amazing work in promoting positive images of limb different children.

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Huxley, Tommy and Kobi at a Lucky Fin meet up

We have thought tirelessly of a way as parents we can help not only limb difference children but also parents and expected parents so along came the idea of the limbBo Foundation.

I invested in a budget 3D printer initially and then a more advance one and tirelessly taught myself how to use it.

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I was able to create a prosthetic with the help of The amazing TEAM UNLIMBITED, I was incredibly proud, was my first step at helping him adapt. download

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The first step will be to design and create heartfelt, considerate, informative, non judgmental, useful leaflets plastered with photos of superb kids like Tommy and how they’ve overcome adversity, made friends and living a happy life….that’s what we needed, a hug and it’s going to be ok, not medical journal. We will aim to get a professional product that can be mass printed and positioned in hospitals throughout the UK.

Going forward we want to bring limb difference kids together in this country, have regular meet-ups, adventure days, and trips away. This will also give parents a chance to share their stories and adversity’s together.

Finally we hope to research, design and create new electronic aids and prosthetics to help limb difference kids do tasks that are at the moment not possible for children missing upper limbs (using a knife and fork simultaneously for example) and make day to day life just a little bit easier.

The charity is still in the creation stage and with the help of friends we hope to fully register with the charity commission by the end of the year as soon as we have completed their criteria.

Yesterday  BBC Look North and Radio Leeds came to interview us and film Tommy – two incredibly patient and kind ‘Misters’ as Tommy called them.

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There is so much happening at the moment it’s a roller coaster – website (still under construction), facebook page    Just Giving page Discussions about writing a children’s book – illustrated by a local school, so many things we want to do. I hope you can follow our journey and please get in touch if you can help in any way or more importantly if we can help you.

There is a link here to the BBC article and here for the video clip

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Friday saw an article in the Barnsley Chronicle

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Saturday the Daily Mirror

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Jane x

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How old can you be and still have a mid life crisis?

It’s my birthday at the weekend and i’ll be 59. I don’t feel old but I am having a crisis. I’ve been saying i’m going to retire for a few years now but kept saying yes to jobs and seemed to limp along. A bout of illness at the end of last year made the decision for me and I had to cancel work bookings. It’s definitely a case of ‘be careful what you wish for’. I feel lost, invisible, isolated, guilty and am driving my long suffering husband to distraction. I want to be useful, I want to do something for charity, I need to be creative … my head is ‘a shed’ and I’m not sure where I go next.

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This morning I received an e mail from someone I went to school with and haven’t seen for 40 years! They were so lovely about my book Learning Through a lens and had taken the time to contact me. You have no idea how much that helped me. It really did make a huge difference and made me determined to make sure I tell others how much I appreciate them.

So at the minute, I’m trying to turn my sewing into a productive hobby (very frustrating but rewarding), I’m investigating charity ideas and planning to spend my birthday with my two grandchildren at my great nephew’s 5th birthday party – how can you feel down when surrounded by so much joy x

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Sewing linen and leather baby shoes

30 years on – tread softly …

Do you ever drive somewhere and when you arrive just literally shake your head as you have no idea how you got there? I was having this discussion with an old friend and we both feel like that about our lives – how did we get here? We are pushing  sixty our children are grown up, married, parents. Our own parents are in their 80s and some have died. Life has quite a surreal quality at the minute. This week it Is 30 years since my eldest son died and I want to mark it in some way. He died when he was 8 weeks old and I will never forget how soft his skin felt when he was first born. 

Do I see him as a 30 year old? No he’s my baby, he will always be my baby and I can’t imagine him as a grown up. I think about him, the hurt has faded and I know he would have suffered if he’d lived. Has he left a gap, changed my life … hell yes! When he was 21 – I bought a watch which I have worn everyday since. I take flowers to his grave, I talk to him there. The anger has gone – you can’t be angry for 30 years, the pain has lessened, the memories though as sharp as ever. The sounds and smells of the intensive care unit imprinted on your subconscious. 

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As Matthew only lived for 8 weeks, his birth and death are all intertwined in my memories – I wrote this last year but never posted it.

Certain days are etched on your memory. The sounds, the weather, the emotions. One of my worst days was 29 years ago today. My baby son died in my arms. He lived for 8 weeks and 2 days. I’d  held him up to the hospital window to show him the world he would never get to experience. I’d cried and begged him to let go, I could see he was suffering. The fear, the sheer terror accompanied by the steady hum and beeps of hospital monitors. Death isn’t peaceful it’s drawn out and rasping breaths getting further apart mark life’s end. 

The silence when it comes is all invasive and the need to run or scream or curl up in a ball take turns at overwhelming you.  Nervous expressions, kindly smiles but no one knows what to say. You are offered a Polaroid once all the tubes are removed but I can’t look at it.

The uncomfortable silences, the forms, the formalities and then you go home without your cherished son who has been your focus every single hour of his short life. Emptiness,sadness, bitterness, rage – every emotion you can think of and suddenly it’s 29 years ago. You are divorced from his dad, you have a younger son who has his own children, the floral tributes now include one to ‘uncle Matthew’. Life goes on, the hurt is buried deeper, the scars fade but nothing can take away the memories.

So here I am 30 years on, blessed with two amazing grandchildren- no idea how I got here but I’m going to enjoy it and honour the memory of my beloved Matthew by looking after his namesake Thomas Matthew, and his little sister Layla Jane

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‘Tread softly for you tread on my dreams.’ WB Yeats

Outdoor learning just in the garden

Tommy and LJ love our garden, they love Mamma’s greenhouse (Tommy has been calling me that since he began talking and couldn’t say grandma). We are learning so much by playing outdoors just in this small space.

I wanted to share some free and inexpensive  ideas for developing your garden and using it for fun learning

  1. I’ve left a patch of grass ‘wild’ to encourage butterflies and bees. It looks very wild now and the grasses are almost waist height for Tommy and LJ. They love walking through this and feeling the different textures as well as looking for butterflies.
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  2. Seeds – I saved seeds from poppies, sweet peas and foxgloves last year and we planted these earlier this year. They understand the sequence of plant pot, soil, seeds, more soil, water and writing a label and can now plant seeds with very little help.
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  3. We won a book on Toppsta called ‘Bee and me’ this is a stunning book all about the friendship between a little girl and a bee. It arrived with a packet of beautifully illustrated seeds. Obviously we planted theses and nurtured them ( toppsta is a site where you can look at book reviews and recommendations but can also win ‘ giveaways- well worth a look)
  4. As a result of the above we now spend a lot of time looking for ‘buzzy bees’ and talking about pollen and flowers.
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  5. I caught Tommy outside with his camera taking ‘photos of flowers like mamma’
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  6. We allow the kids to fill up the bird feeders and that’s one of the things they ask to do now.
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  7. Tommy has a digger with a bucket on the front and we collect small items to fit in, leaves, feathers, stones all the while talking about big and little
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  8. We listen for sounds – I could have cried when Tommy said ‘listen to the birds singing’ -Tommy particularly likes aeroplane spotting.
  9. We have picked tomatoes from the green house and eaten them outside ( I have stressed he must always ask me first before eating anything!! Paranoid grandma.)
  10. Tommy uses the hosepipe to water the tubs and we are gradually learning what is the correct amount of water – we’ve had weeks of too much water to get to this stage!


None of this is rocket science I know but I’ve really started to learn about the joys of outdoor learning as I have been privileged to work with Juliet Robertson ( take a look at her blog there are so many ideas on there!)  on two of her books Dirty Teaching and Messy Maths ( both by Crown House ). I now think about the language I use and can see joy in the kids faces when we lay on the floor to look at a green caterpillar or Tommy asks what the berries are on the tree. I love it when they are excited to see starlings feeding their young or when LJ makes piles of pebbles. Yes they get dirty and my hosepipe is Tommy’s favourite toy but they are outside playing and learning to love nature which has got to be a good thing 

We did buy some items, a magnifying glass which meant we could look closely for caterpillars and bugs, children’s gardening gloves – they were £1 a pair at a local hardware store, smaller watering cans and the children’s first book of birds from The RSPB.

It’s the little things that matter …

I have been horrible this weekend. Bad tempered, snappy and irritable. Why? I’ve no idea – I just know I’ve been difficult to live with. You know those times when you can hear yourself and know you need to shut up but can’t – yep one of those days!

Two things made me stop and think about what mattered this morning both tiny little things but they made me stop and smile. I have lots of virtual friends on twitter – many of whom I’ve now met in ‘real life’ but this morning one of the ones I haven’t met yet  tweeted about my photos of wildlife and my grandchildren – it’s so lovely when people appreciate your work and what you are trying to share. Kathy typifies many of my followers – supportive, always caring and ready to share. Thank you for pulling me up short Kathy!

The second tiny thing was when I got to Tesco I realised that I hadn’t put my necklace on!

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I wear it all the time – it was a Christmas present from my two lovelies – it has their names, DOB and fingerprints and as my Daughter in law said ‘it’s so you can hold their hands even if they aren’t with you’. 

Strop over, irritation gone, I know how lucky I am and if I forget I can just hold their hands and remember 🙂

If you are interested the necklace was from pickle and pumpkin 

The (tongue in cheek) grandparent’s guide to indoor play areas

Tommy and LJ love ‘Play Valley’ and a trip there instigates almost mass hysteria. Never underestimate the pull of brightly coloured plastic!

It occurred to me yesterday that there are pearls of wisdom ( tongue firmly in cheek) I can pass on to Rookie grandparents

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  1. Footwear – never wear shoes that have laces or are difficult to get on and off. By ‘difficult’ I mean you must be able to just step out of them at a seconds notice to race after your charges. I know you will usually take them off when you get there but the same rules apply – no 2 year old is going to sit and wait patiently whilst you untie your laces!
  2. Clothes – nothing ‘posh’ nothing restricting – it may be years since you climbed to the top of a huge slide but once your grandchild runs up those squashy stairs and totters at the top – you will have no option but to scramble after them.
  3. Ball pools – may look empty BUT always assume there is a child hidden under the balls (99% of the time there is) so do not allow your grandchild to dive in head first
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  4. Do not assume you can sit at the side sipping your latte in a leisurely fashion – get that fitbit on and realise the only way to cope is to get in the middle of the melee and follow your grandchild within grabbing distance.
  5. Food – you are usually not allowed to take your own food but there will be an enticing ‘bag’ option. Do not even think about trying to steer toddlers into the healthier option, pick your battles – they are never going to go for a banana when there is the option of chocolate. Give in gracefully and eat half of it yourself.
  6. Don’t underestimate the fearlessness, agility or speed of your grandchildren. I am still cringing as LJ (who is 19months) pushed a 5 year old down the slide yesterday as she was sitting at the top too scared to move and was in her way!
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  7. Change their nappies before you go – they will create such a fuss if you try to take them away from the coloured plastic for something as mundane as a nappy change.
  8. The machines that require money for a ride are always ‘broken’ well that’s what I always tell my two – having once made the error of saying one ride only each …
  9. Always smile encouragingly and sympathetically at a grandparent who is trying to coax their toddler to leave – it won’t make a difference but hopefully someone will return the favour and smile in sympathy with you when it’s your turn to leave.
  10. Take your phone or a compact camera – the smiles and joy are worth all the aches and pains you will have tonight – and reliving it over a glass of wine in the evening will make you smile.
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A break through …

The lack of left handed cameras is frustrating, as is the lack of understanding on the part of major manufacturers. However, we are undeterred and yesterday saw a breakthrough for us.

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We were in a cafe when Tommy put his camera onto the table and looked at the live view screen, he shook his head and said ‘can’t see you mama’ He was actually trying to line up his shot! I am so incredibly proud of him. He usually balances the camera on his little arm and presses the shutter with his left.

JMH_1252  Later on I put my own camera away and realised I was thinking about tripods in the wrong way – he doesn’t need a proper size one just a miniature one. I had a very small gorrilla pod and attached it to his camera – we then laid on the floor – RESULT – look at this photo of LJ – Now look closely in the bottom right hand corner – total fluke but you can see myself and Tommy in the reflection in the cooker. Its not an ideal solution but it’s one we are going to continue to experiment with.

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#tenfingersareoverrated #luckyfinsrock

Limb difference awareness month

The joy of a cardboard box

Just the norm

Tommy and LJ had a ‘sleepover’ yesterday ( the reason for the inverted commas will be obvious to any grandparents out there). I’ve watched Tommy develop and am struggling with being amazed at what he can do with his little arm and being cross with myself for being amazed, as to him this is just the norm.He was ‘decorating’ ( yes those inverted commas again) the Christmas tree and couldn’t get the bauble string to go over the branch. I never do things like that for him although the grandma in me often has to sit on her hands to stop herself! He held the bauble with his left hand and pushed his little arm Into the middle of the string to hold it open. Amazing he’s worked it out, but why wouldn’t he it’s normal for him?

We snuggled reading books and he had a bottle of juice with a stopper, he opened with his left arm whilst tucking the bottle under his little arm, he used his little arm to press it down, he opened it with his teeth. I watched in fascination. He is oblivious as this is his world. I have hundreds of examples of where he amazes me but then I make myself remember he’s an ordinary little boy learning to do things his way.

He climbed over his baby gate yesterday and found his advent bag – one book a day for December and a toy on Christmas Eve -really grandma?? – well at least he and LJ have lots of books to read and play with now – my poor son was distraught and was going to wrap them up again but it’s just Tommy being a 2 year old.

LJ is now one and is the most independent child I’ve ever met. She meets life on her own terms, cuddles when she wants, climbs, feeds herself potters happily and has been walking for ages! Having Tommy so close in age she just copies everything he does – they come as a pair and he greets her like he’s not seen her for months when you pick them up from nursery where she is in a different room – here she is and a hug.


I’m so proud of the pair of them, I know they will cope with whatever life brings them – they will both have their own challenges and I need to be amazed by them as the brilliant children they are.