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.
I want to be #morelikeLJ
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
So this Summer I WILL be #morelikeLJ
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’.
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.
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)
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’
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 🙂
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.
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.
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.
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.
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.
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.
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.
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!)
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
I’ve been playing with dyes and sunlight printing this week. I love it – so easy and so effective – for those of you who asked for instructions and more details here are just some quick guidelines.
white cotton or calico fabric
Dye na flow paints – lots of different colours available see the photo in the side bar which will take you directly to this on Amazon
Flat surface (covered as it will mark)
leaves, flowers or any object that will lay flat
wash your fabric – (gets rid of chemicals and allows paint to absorb better)
cut fabric to size and wet
squeeze out excess water (but it still needs to be wet)
Place onto a flat (protected) surface
Paint with as may colours as you want – more than one is effective but you can get some colours from plants (dandelion heads leave a yellow mark)
place your leaves onto the wet fabric and press them into the paint with your finger tips
leave in bright sunlight to dry
carefully peel off the leaves
iron to seal the colours
some colours work better than others – pink on its own very pale but pink and blue mixture is stronger
Burnt umber is v effective
Fern type leaves are an excellent choice as they add detail
There are no ‘rules’ just play!
It’s worth allowing children to play – Tommy threw a pile of grass onto his picture so I left it – it really worked!
Let me know how you get on x
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.
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.
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
and Greg & Tori Lynch who built Tommy’s first ‘Buzz Arm’ and introduced me to prosthetics.
We’d also like to thank to Lucky Fin Project for all of their amazing work in promoting positive images of limb different children.
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.
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.
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.
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.
Friday saw an article in the Barnsley Chronicle
Saturday the Daily Mirror
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.
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
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.
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
‘Tread softly for you tread on my dreams.’ WB Yeats
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
- 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.
- 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.
- 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)
- As a result of the above we now spend a lot of time looking for ‘buzzy bees’ and talking about pollen and flowers.
- I caught Tommy outside with his camera taking ‘photos of flowers like mamma’
- We allow the kids to fill up the bird feeders and that’s one of the things they ask to do now.
- 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
- We listen for sounds – I could have cried when Tommy said ‘listen to the birds singing’ -Tommy particularly likes aeroplane spotting.
- 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.)
- 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.