Tag Archives: family

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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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

1st July 2015

Mum died on 26th June and we have spent this week making the seemingly hundreds of arrangements. I will blog properly when I get my head together but wrote this today as i’m struggling.

Friends keep asking me how I am but the honest answer is I don’t know. Mum died last week and whilst I’m desperately trying to mourn her I’m having trouble finding her. The person we called mum for the last few years hasn’t really been mum at all. She has been a confused and frightened lady who  gradually declined to the point of not knowing who we were. She changed in mannerism, appearance and outlook. She had mood swings, phases of being angry followed by tears followed by just sleeping.
So I want to remember my ‘real mum’ the one that looked after and cared for me, the one I could phone for advice and support, the one who loved me unconditionally. But I can’t find her. At the moment the memories of the last few years are too vivid, the images from the last few days imprinted solidly on my mind. I hope in time these will fade and allow my real mum to come back but at the minute the answer to the question  ‘How are you’ is a bland one as I can’t explain I’m still looking for mum xx

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30th April Dementia Diaries update

Today has been a day of two halves. The first half was a wonderful couple of hours at a Special School talking about Kakuma Refugee camp with a group of delightful young people who are all keen to make a difference.

On the way home I called to see Mum. whilst I went to get a chair she said clearly ‘Who is that woman?’ I knew this day was coming, I knew she was deteriorating but even though you are prepared it still hurts. On returning to the room dad had his head bent and was crying. What do you do or say in these circumstances? Who do you comfort?

I’ve felt cold and shivery for the rest of the day but my wonderful family, as always, has been there for me, as have my friends. I don’t know what the future holds but I know mum won’t get better. Do we hope for a gradual decline to keep her with us for longer or hope for a release from her suffering? She spent the rest of the morning asleep and making noises – I made dad leave – there is only so long you can sit and cry. He isn’t well, he is suffering from grief and guilt – this is one hell of  a cruel disease.

decay 2 RZ