2015 - well what a year that was!

So long since my last blog post but I felt the need to say goodbye (and good riddance) to 2015, which to quote HRH The Queen has been an 'annus horribilis'!

Don't get me wrong, there have been some positive and lovely moments such as receiving my World Down Syndrome Day award and whilst not being able to collect in person, having the lovely Emmanuel Bishop do it for me.

And being presented with a beautiful glass bowl by Down's Heart Group to mark 25 years of working for them in voluntary and paid positions.

But overall it's been a rubbish year both personally and for our global Down's Syndrome community, with far too many of our youngsters being seriously ill and some of them eventually gaining their angel wings.  It's thankfully been a good number of years since I can recall there being such a bad period of loss, but together with family events this year, it's reminded me how emotionally draining it is to be powerless to help those who are being torn apart inside by worry or grief.  It's the one part of my job I don't like.

 

When I initially volunteered to help Down's Heart Group as I felt that maybe I could use our experiences of having Daniel to help other families and perhaps make their journey a little easier.  I was thinking primarily of those with a new diagnosis, but of course it was inevitable that I would at times also be dealing with other bereaved parents and that is a lot tougher.  As much as I would do anything to take some of their pain for them and walk part of that journey on their behalf, it is something they have to do for themselves and all anyone else can do is be there for them and let them know we care.  

Thankfully for those with a new diagnosis, whether it's before or after birth, there is more we can do, by providing factual, up to date unbiased information, answer questions and support them in various ways.  

Echoing the thoughts of Emily Perle Kingsley, we can help them discover that having a child with Down's Syndrome is like going on a World cruise where the itinerary has changed a little from the one you'd planned.  A few places may be missed off and a few unexpectedly added and the order and timeframe may alter, but in general the tour will include everything you expected and were looking forward to.  Basically you've been transferred from the ship you bookedm onto a different one that has a slightly changed itinerary, but it's not The Titanic, so it's not a disaster, just a change of plan.

So to all my friends currently on their cruise - enjoy every minute.  For those who've sadly returned to shore - savour all those wonderful memories, knowing no matter how short the trip, it was a once in a lifetime experience.
  

I wish you all a year of peace and hope across the world!

Before you judge me, please listen to why I don't wear a poppy.

At this time of year I am surrounded by poppies and it's not uncommon for someone to comment disapprovingly about the fact that I'm not wearing one - you'd think I'd be used to it by now as I've not worn a poppy for 25 years.

But before you assume that my decision comes from a lack of respect, let me assure you that I have the deepest regard for past and present members of the armed services.  Many of my extended family have or are still serving and my mum and her three brothers all played their part in WW2, in fact my Uncle Geoff was a Japanese prison of war who worked on The Bridge over the Rover Kwai, so I have every reason to show my support.

When I was in school I was one of those who volunteered each year to sell poppies at break times and prior to 1989 I would not have dreamt of being without a poppy in the weeks running up to Remembrance Sunday, but events that year changed the significance of the poppy for me and I've not been able to wear one since.

On Sunday November 12th 1989, the last thing we watched on TV before going to bed was the service from the Royal Albert Hall and that always poignant moment when the poppies fall from the roof.  Shortly after midnight the telephone rang - it was the hospital telling us that we needed to come in as there was a problem with Daniel.  We knew that it was serious for them to have called us, but we had no idea of what we were to find when we arrived, Daniel was gone, his short life had stopped after just 100 days.

For me not wearing a poppy has nothing remotely to do with lack of respect for Rememberance Sunday and the sentiment behind it, but everything to do with what that event in 1989 has caused me to associate with the poppy and it is just too emotional a symbol for me to cope with, even after all these years.

So perhaps before you assume that someone without a poppy has no respect, you'll wonder if there is possibly another reason.

My Olympic Torch Relay - one year on

I can't believe it's so long since I posted on here, I had so many good intentions of posting regularly but life just seems to have got away from me and on the odd occasions when I've had time I've not been in a good place to write - especially since I lost my mum earlier this year.  But it's one year to the day that I had the honour of carrying the Olympic Torch in honour of friends with Down's Syndrome worldwide and at 7am I am due to meet with two reporters from the local BBC Radio station, so this is a good opportunity to get my thoughts in order for that.

The two guys are cycling the route the Torch Relay took through our three counties and chatting to some of those who were involved along the way.  They want to know what my year has been like. what I've done and what have been my highlights.  So where do I begin and what do I include?

I loved visiting the schools and various other events where people got the chance to hold the Torch and take photos.  Especially gratifying was the day I went to the Disability Resource Centre in Dunstable when they had the Paralympic Torch flame visiting before the Paralympic Torch Relay.  It was very humbling to witness the reaction of some of those people with disabilities who could not verbalise their feelings but who had pleasure written across their faces.  A few days later I also had the wonderful opportunity of witnessing a local stage of the Paralympic Torch Relay when friends from Stepping Stones DS took part, including young Nicole Williams, one of our Down's Heart Group members - she looked so proud!

 

In October I returned to Nigeria for my third visit to the Down Syndrome Foundation Nigeria and took the Torch with me.  The youngsters loved having their photos taken holding it (in fact everyone did) even my gorgeous goddaughter Honour whom I hadn't seen for two years.  It was wonderful to see her doing so well as last time we met she was a tiny little soul in desperate need of open heart surgery - now she is lively little girl who is walking and talking and defying all the expectations for a child with Down's Syndrome in Nigeria.

The flights passed uneventfully despite taking the Torch on as hand luggage, in fact the only really awkward moment was taking it through security at Heathrow. Off it went down the conveyor belt towards the x-ray machine, then the security guy watching the screen looked up questioningly and said "Is that what I think it is? An Olympic Torch?", I replied yes at which point he announced at the top of his voice to all the surrounding security (and passengers), "I've got an Olympic Torch here!"  So much for me trying to be discreet about what I was carrying.

In December I was one of 16 Torchbearers and 16 Gamesmakers invited to attend the BBC East Regional Sports Awards.  That was amazing, we got to meet several of our Olympic and Paralympic Medal winners and they were very gracious and not only posed for photographs but even let us hold their medals.  I was honoured to hold the Gold Medal of Etienne Stott.

 

Then to top it all, in March I went along to help at a fundraiser for Watford Mencap where they had Lord Coe as the speaker.  Not only did we get a wonderful photo of a group of us together including my friend Caroline England of Herts Inclusive Theatre who carried the Paralympic Torch, but Lord Coe very kindly signed the souvenir folder that I was presented by Coca Cola who were my sponsors for the Torch Relay.

It has been an amazing year and I can't believe it has passed so fast.  I had fantastic support from friends far and wide with people watching me live on Torchcam all across the world, many wonderful opportunities to talk about the organisations I am passionate about and raise awareness.  I am honoured to have had such an opportunity and I cannot possibly single out one occasion that means most to me as they have all been uniquely special indifferent ways.

There is however, one memory that I will treasure above all of them for very personal reasons.  About 18 months beforehand my mum was diagnosed with dementia and for much of the time she had no idea of who I was, but by some miracle there was a short time last year when she was back with us and it coincided with the Torch Relay.  Not only was she able to sit with two of the care home staff and watch me live on Torchcam, but later that afternoon I visited her in my uniform with the Torch and she knew what it was all about - it meant the world to me.  Exactly nine months later she passed away peacefully in her sleep.

So to everyone that made this possible, that supported me and encouraged me and to all my friends in the global Down's Syndrome community - THANK YOU! 

Celebrating World Down Syndrome Day 2012

On the 2nd day of Christmas ...

It seems obvious for the 2nd day to talk about twins. I know several sets of twins who both have Down's Syndrome, but today I'd like to mention a family who have one twin who could use our thought and prayers.

May I introduce the Hext twins, 5 year old Harvey and Spencer who you may have seen on this years Noel's Christmas Presents when their family went on a trip to Lapland and the boys met another set of twins, Jedward.

Harvey and Spencer Hext

Spencer and Harvey are identical twins who have Downs syndrome, which makes them fairly unique as there are only a handful in the UK, but Harvey is even more unique. In June 2010 he was diagnosed with stage 4 Neuroblastoma, a very aggresive childhood cancer and he is the first documented patient in the world to have Down's syndrome and be treated for it, meaning that there are no comparable reference points for his treatments, as the medical team have no experience on the amounts of drugs his modified genetic makeup will cope with.

Harvey has amazed his family and his doctors with the way he has coped with the chemotherapy and MIBG therapy he has been given, he has also recovered very well from a 14hr operation to remove the primary tumour in his stomach, but throughout the awful treatment he has had to endure, he has remained spirited and inspirational. Sadly though,

Harvey has not responded to the chemotherapy as everyone had hoped he would and although his consultants are still treating Harvey's cancer as cureable at the moment, treatments in the UK for Neuroblastoma are limited so his family are currently looking to raise £300,000 as it is most probable Harvey will need treatment abroad that is not covered by the NHS.

If you would like to donate to Harveys fund please do so using this link FAN Harvey Hext  (Donating through this page is simple, quick and secure and if you are a UK taxpayer and give Gift Aid consent the charity will receive extra at no cost to you.)

On the 1st day of Christmas ...

I'm hoping to find time to make a blog post every day of the 12 days of Christmas, primarily about friends with Down's Syndrome, but I'd like to start today with a short blog in honour of my mum.  Right from the time my special boy was born, she accepted him without question and was supportive of my work with Down's Heart Group.  So I think it only fitting that I start with her as she was the primary influence of my formative years and instilled in me the values of acceptance and inclusion that are at the root of everything I do.

A week ago the wonderful lady that brought me into the world had her 88th birthday and today we shared an hour of companionship together at the care home where she has been resident for the last 9 months.  We sat and chatted as she opened the cards and presents that I had taken in for her and whilst it didn't match the level of communication that we shared in the past, I was thankful that today she was at least aware of who I am.  

Mum and I during my visit today

The past 12-18 months have been a difficult journey for me as I've had to come to terms with her diagnosis of dementia and the rapid deterioration she has experienced.  It's been hard to watch someone who was so fiercely independent and capable become totally reliant on assistance from carers and harder still to witness her memory loss which means that much of the time she has no idea who I am.  But, I'm trying to see something positive in all of this and perhaps my experience will in some way help me support families who sadly have to face a diagnosis of Alzheimers in their loved one with Down's Syndrome.

I started out nearly 22 years ago with the idea of using my experience of having Daniel -  getting the diagnosis, going through the bowel and heart surgeries and his death - to try and help other parents in some way, so I'm trying to approach mum's diagnosis in the same way.  Mum's thankfully unaware of her situation which I am so grateful for and from my point of view I'm trying to see what I am learning as something which gives me firsthand knowledge that I can hopefully pass on to others. 

 

To my beautiful boy on your 22nd angel anniversary

A letter to my angel in heaven who shared such a brief time with us and yet made such a huge impact on our whole family.

The t-shirt from my fundraiser in 2010 to mark my 50th and your 21st

Well, as usual at this time of year, I'm having a hard time coping with the poppies that everyone is wearing and at least one stranger has felt the need to point out my lack of respect for not wearing one. 

I'm usually quite happy to talk to anyone about you (even losing you), but this is the one time of year that it's just too hard and I wish people wouldn't be so quick to judge.  I totally respect Remembrance Day and what is stands for, but it's just such a strong part of my memory of the hardest day of my life.  The Royal Albert Hall service was the last thing your dad and I watched on television before going to bed and being woken unexpectedly by that call from the hospital, so even now I can't handle that link -it just brings back that memory so vividly of being told were gone!

So many flowers for such a little person

I was laying in bed last night thinking about you and the fact that I carried you and was your life support for longer than you were actually with us and how so suddenly and unexpectedly you were gone.  I'd known you were poorly but had never really thought that we would lose you and suddenly after 100 days you were gone.  How could I cope with that?  Why had it happened?  What sense did it make?  I went through the motions, largely for your big brother, Andrew, who was after all only 18 months old himself.  He had spent a lot of time those previous weeks visiting you, he knew you belonged to us and idolised 'his baby' and somehow I had to explain your going in a way that he could understand when I couldn't really understand it myself. 
 

You and your big brother Andrew - a rare photo of you awake

I felt so alone and surrounded by people who didn't understand what I was feeling and my lifeline was Down's Heart Group where I found other bereaved parents to talk to, so I guess it was only natural that I should eventually want to try and give something back.  Somehow it seemed to make some kind of sense of your short life to use what I had experienced to try and support other parents going through the same thing and the organisation was an obvious way to do that.

Well that was all many years ago now - I carried out my first official Down's Heart Group task on April 22nd 1990 (I remember the date as it was Andrew's 2nd birthday) and I had no idea back then of the incredible journey I was embarking on.  It has been amazing: I've travelled to different countries, met famous people, been on TV, radio and in the papers, but MOST OF ALL I've met the most amazing people who all share one thing in common, an acceptance, understanding and love of people with Down's Syndrome. 

About 6 hours old - the first time I really got to hold you

And without you Daniel, it would never have happened.  I am so grateful that we had no idea of your problems before you were born because if I am honest, I know there is a chance that had we known, we might have made a choice to end your life in the womb given your medical issues and the potential impact on your big brother.  I'm certain that I would have been convinced that there was no way we would be able to cope with it all, but of course we did because you were our baby, our precious boy and we knew from the start that no matter what we would love you and fight for you as hard as we could.  It's amazing what hidden strength you have when you need it!

Your emergency Christening waiting for the ambulance to Great Ormond Street Hospital

You changed my life Daniel - at first it was hard to cope with the pain of your loss, but now I can look back over the past 22 years and whilst it still hurts to think of you and wonder what you would be like now, I have so many positive memories to counter it with.  Thank you for introducing me to this wonderful community, where I have met so many inspirational people who have enriched my life - you truly were a gift, I cherish my memories of our short time together and I am honoured to be your mum.

 

Dedicated to the boy who started me on this incredible journey, 

to all the wonderful individuals and their families that I have met over the past 22 years, those I've hopefully yet to meet and with special love and hugs to all those whose loved ones have also earned their angel wings.  

Language and how we each use it

All the media attention surrounding Ricky Gervais got me thinking last night, particularly about my own use of language and how that has changed over the years.

When I was a child, my cousins whom I spent lots of time with, lived near to the local 'mental hospital' as it was called back then.  It was the typical building of it's type, large. cold and imposing behind high walls and as a small child I remember being scared of going past as our understanding at that time was that it housed 'mad people', which to our young minds and limited knowledge meant people the likes of Myra Hindley who would surely murder us if they could get to us.  Occasionally one of the residents would escape from the confines of the grounds somehow and the reporting in the local press only added to our misunderstanding as they talked of 'escaped inmates' being 'potentially dangerous'.

By the time I reached my early teens, I had come to a better understanding and believed that the occupants were people who have mental health issues and presented as much of a  danger to themselves as others if allowed to wander about in our community.  Then I had an experience that provided me with a greater insight when my dad had some kind of 'turn' (I really can't be more specific than that as the doctors never could provide an explanation) and suddenly seemed to forget about the past 20 odd years of his life.  He was initially admitted to the psychiatric ward at our local hospital and then transferred to a London hospital for further testing, during which he suddenly came out of whatever was happening and after several weeks of complete memory loss, was completely back to his old self at the complete bafflement of the medics.  

This was my enlightenment to the fact that mental health issues can affect anyone and that referring to 'nutters and lunatics' was not something that was acceptable - those words along with others such as 'loonybin' were removed from my vocabulary as I became more aware of the potential impact that such words might have on those around me who might have links with individuals to whom these words would commonly be applied.  I guess the experience with my dad (actually my step-dad but the only father I had ever known) and also the fact that my mum had suffered so much, even from her own family due to my illegitimacy, made me very conscious of how easy it is to cause distress to others, even unintentionally.

"I was a student nurse at Leavesden Hospital in the early 1970s. The wards were 

big, tall, bleak buildings three floors high. They were cold inside with tiled walls."  

from Out of Sight, Out of Mind? project website 

Some years later life added another lesson for me.  We had been through the grief of learning his diagnosis and that he had major heart and bowel issues, come through that and accepted him as our son only to then have to endure the further grief of his loss when he was 100 days old.  It was a major life changing experience that pretty harshly pointed out the attitudes of some people whom we had previously thought of as friends and it made me once again reconsider how my words and actions might impact on those around me.  I knew that whilst I would doubtless make mistakes and say things that would upset and offend others, I would make a sincere effort to be aware of my use of language and to actively encourage others to do the same by politely pointing out when words and phrases were used that could be upsetting in certain contexts. (not to necessarily stop people using them, but to make them aware of situations where they might want to choose an alternative).

It was in relation to our son that some years after his death, Leavesden Hospital was to enter my thoughts again.  My aunt had actually worked nights there as a nurse when I was young and at a family gathering we got to talking about Daniel and Down's Syndrome at which point she said to me "of course I nursed lots of people with Down's at Leavesden".  I was stunned, not because I was unaware of the fact that people with learning disabilities had been institutionalised, but I have never made that connection in my head with a group of people that I had now come to understand and feel a strong connection with and that terrible, imposing, prison like building of my past.  She told me some heartrending stories of how the staff were not allowed to interact with them, how many had been there since they were small children and never had visitors - it was very distressing to hear, but even more so to think that it had been happening so close to me and in my lifetime.

When you read these things, they often feel quite distant and remote,  

but this took place just 30 odd years ago and involved a much loved aunt 

- I was deeply shocked at that realisation. The hospital finally closed in 1995.

So, getting back to language and it's use, I appreciate that it would be a mammoth task for everyone to be fully aware of the potential issues surrounding the use of every word, particularly in an area that they have no personal experience of, but I do think that if it is pointed out to you that your usage of a particaulr word or phrase is causing distress to others, you have a clear choice to either stop using the word or to totally ignore the feelings of other people.  Perhaps if only one person is upset by the word, then you can argue that they are being over-sensitive and feel comfortable disregarding them, but when a good number of people express concerns, I personally think you have a moral duty to think about your actions.

I am just a small insignificant person in this world, but I feel obliged to consider and respect my fellow humans, regardless of any differences in race, colour, religion etc.  I don't have to agree with them, but I should afford them the same courtesies that I would expect from them and whilst I may not always get it right, I will strive to do my best and apologise for my failures when they happen.   In my humble opinion, people that are in the public eye have generally been placed there by the smaller more insignificant amongst us and as such I feel that those people also have a duty to consider and respect others, in fact probably more so.  Many well known individuals have used their success to actively support charitable efforts and champion the cause of others who are less fortunate, it's a shame that others seem intent on just the opposite.

Ricky Gervais and his use of the word "mong"

I have of course been involved in commenting and expressing concern about this well known comedian's use of this word which he says has a new meaning and has nothing to do with Down's Syndrome, but which is seen as highly offensive by many people who have a connection with the condition.

Daily Mail: Ricky Gervais sparks anger for 'two mongs don't make a right' comment on Twitter

As well as those who have found it offensive there have been many others who have spoken out about freedom of speech and oversensitivity of certain groups - this morning I took part in a debate on Radio 5 Live Breakfast Your Call (on iPlayer for next 7days)

Well, I'm sorry, but I don't find it funny to laugh at the misfortune of others - even some of those "You've been framed" videos where people have agreed to showing their accidents make me say ouch and feel sorry for them. If I use a word or phrase that is distressing to someone without realising and they point it out to me, I will try really hard to never to do it again and if it slips out I feel terrible.

When possible I try tactfully to point out to people that we refer to people with DS as people first ie "a person with DS" not "a DS person" and I would listen and respond to anything similar someone explained to me about another condition. We can't be expected to know everything about the use of different words in other countries or different fields of interest, but that doesn't mean we can choose to ignore the affect they have on others when it is pointed out to us.

In 2009 I experienced something that many of you may never do and it got me thinking. I was for the vast majority of a 10 day visit to Nigeria, the only white person and as such was the object of quite a lot of interest from the public. No-one did or said anything hurtful or offensive to me and I never felt in any way threatened, but that did not stop me feeling that all eyes were on me and that I was being singled out for attention - I realised that it must be like that pretty much every day for someone with DS once they are old enough to be aware that they are different. It must be a pretty hard thing to live with all your life, even without direct taunting and with the love of family and friends around you.

Ours is a sad society when we feel it is acceptable to go around making fun out of people who are 'different' despite the fact that we are so called 'educated and enlightened' - surely we should be realising that everyone has feelings, everyone wants to be loved and to belong and EACH and EVERY one of us should be trying to promote that, whoever we are, but more so if we are in the public eye and can share that example with so many others through our work.

Someone like Ricky Gervais is in a position where he could do so much good if he chose to, in fact some people claim that he has already done a lot to highlight disability issues, in which case why does he not seem able to understand why these comments are so upsetting to our community and at least refrain from further use or apologise?  I certainly wish I had his money and opportunities to make a difference, but if he doesn't want to help, then he could at least stop hurting those we love!




Update October 22nd 
Well it appears that Ricky Gervais has finally realised how upsetting this has been for many people.  He still says he meant no harm and had not realised that anyone still linked the word with Down's Syndrome, but he has apologised directly to Nicky Clark who was one of those who spoke out about the distress to families.  She posted details on her blog Nicky Clark and last night the Daily Mail online posted an article about the apology.  Hopefully that is the last we hear of Mr Gervais using the word and perhaps he will react a little sooner in future if he unintentionally uses a word that causes upset and distress to a group of people.  Thank you Ricky for being a big enough man to say sorry.

World Down Syndrome Day - asking United Nations for official recognition

This is going to be a very short post, but I have some important news and a request that I wanted to share.

Today, 7th September 2011, representatives of Down Syndrome International (DSi) are at the United Nations asking them to officially recognise March 21st each year as World Down Syndrome Day.  There is an online petition where you can register your support for this and we need as many people as possible to sign up and pass the message on to other parents, relatives and support groups across the world.

     127 signatures at 9am GMT on 7th September 2011

Petitions by iPetitions.com | Get Widget

(Link takes you straight to the petition, scroll down to signature box. Sign in with email or Facebook, leave a comment if you like (when you click the 'sign now' link you will be taken to page that asks if you would like to donate to keep the website running but you can just leave at that point and your signature will be registered).

And then make sure you join the World Down Syndrome Day group on Facebook and sign up for the World Down Syndrome Day 2012 event on Facebook and join us in making 2012 a truly memorable worldwide celebration on 21st March 2012!

Reflections on the past year

I guess many people find themselves on birthdays, reflecting on the events and changes of the past year, but I have to say it's unusual for me.  Normally I tend to spend August 2nd trying to be positive and upbeat for my daughter and then as night falls it's usual for my mind to turn to 1989 and the events that were to change my life forever.  Maybe this year was different, perhaps because there have been some major changes in my life over the past 12 months or maybe it's because this year my beautiful daughter Sarah turned 18 and the baby of my brood is no longer a child?

The night of her birthday we sat and had a heart to heart and for the first time I discovered that as hard as I've tried over the years not to let it, her birthday has always been overshadowed by her brother's birthday the next day.  At first I was deeply upset to think that I had let that happen, but as we talked I began to realise that perhaps it was inevitable whatever we did as she is a sensitive and passionate young lady who has been brought up around people with Down's Syndrome and has a knowledge and understanding way beyond most of her friends.  I hope that she never experiences the loss of a child, but somehow I feel that if she did she would already be partly prepared to deal with it.  Growing up with the knowledge and loss of her brother and with them having birthdays so close to each other, she has a much greater understanding of that loss than others who have not experienced it.

So back to the past year and the changes, it's been a tough one in many ways with all the issues surrounding my mum, the diagnosis and quick progression of her dementia and all the difficult decisions that required.  Like for so many other people, finances have been a big concern and not only personally but for the Down's Heart Group too, which in itself places additional anxiety on our family.  There have been incidents where I have been verbally abused and my intentions and commitment questioned to the extent that I have considered 'throwing in the towel' and moving on to another job, but then almost like magic someone comes forward that needs help and support, my faith is renewed again by the comments of my friends in our very special global community and I am able to move forward again.

22 years ago at a time when I felt most alone and in despair, I found support from others who had traveled the road before me and even now it is the members of the Down's Syndrome community who lift me up when I am feeling low - our children are truly a unique and wonderful gift and the bond between our global 'family' is a strong and powerful one for which I am forever grateful.  When I volunteered to help Down's Heart Group all those years ago I had no idea of where that would take me, I just felt that if I could use my experience to help one family it would make some sense out of Daniel's short life. 

I hope that I've managed a little more than that over the years, because I know that I have gained so much from my involvement with this community and that I owe so much more to my wonderful friends that make it up.

In Memory of our Son


Many times the hour-glass has turned
Since you left this place.
So many times our hearts have yearned
Once more to see your face.


So brief your visit here below,
A fleeting time on Earth.
Sometimes it’s hard to understand
The reason for your birth.


But we are deeply honoured,
And very, very glad,
That someone up in Heaven
Made us your Mum and Dad.


You taught us many lessons.
Showed us a different way.
You’re always in our thoughts,
Every single day.

My bid to carry the Olympic flame on behalf of the global Down's Syndrome community

Link to my entry 

Life is so hectic at the minute I'm not sure why I've decided to add to it by trying to do this as well, but it would be an INCREDIBLE HONOUR to represent the global DS community and raise awareness in this way if I were chosen.

Here's the video I made as part of my bid - it's not very good as there was a set format and it was difficult to get photos that would work, but hopefully it gives an idea of the message I'm trying to get across.

 

If you would like to support my bid, I think you can 'like' it from anywhere in the world (just click the 'like' button under the photo of me with pink hair. To post a comment you have to register either through FB or directly but you can only do it if you are in the UK (although I think a few people have fibbed) - then scroll down below the green box of 'My hopes and dreams" to the yellow/orange box that says "I like Penny's nomination because..." click in there and you have 140 characters to post your comment.

THANK YOU all so much! I'm sure I won't be picked with all the energetic young people that are entered, but perhaps the pink hair will get me noticed and I SO WANT to do this for all my wonderful friends around the world. Perhaps my t-shirt should say "People with DS rock!" or how about "I don't just love some1 with an extra Chromosome - I love them ALL!"

Suggestions will be requested if I am successful.

 Link to my entry

It's so easy to help Down's Heart Group and it needn't cost you money!

47% of babies born with Down Syndrome have a congenital heart condition. 

See how easy it is to help Down's Heart Group support a better life for them by visiting our fundraising page. http://www.dhg.org.uk/fundraising.aspx

Forgotten memories

Since my mum went into residential care due to her dementia, I've been going through sorting out her things, old photos etc. and I've found lots of bits and pieces that she'd kept that I'd forgotten all about, including a poem I wrote some time ago. 

Over the years I've quite often found that Daniel's birthday and anniversary spur me into writing poetry.  I've kept copies of lots of them, but not this one, so I was surprised to find it amongst mum's keepsakes.  

Natures Gift

Some of the most beautiful things in nature

Have but a fleeting existence in time,

Yet those who are privileged to know them

Cannot fail to be moved by the experience.

Think of the exotic butterfly, starting off
As a hairy caterpillar, then as a papery chrysalis
Finally to emerge in all its glorious splendour
For such a short moment of its life.

Just when all its hidden beauty is revealed
It is snatched away for ever, when only a few
Will have been touched by its tragic story,
But for them it will have a lasting effect.

So it is when a special child joins your family.
At first it may be difficult to see beyond the problems
But in time their true inner beauty will be revealed
And fill all who come to know them with wonder.

But like the most glorious things in nature
Their visit may only be brief - just time for us to learn.
Remember with joy and love the gift they gave to you
For it is that which is important, not their length of stay.

Take strength and courage from the lessons you have learnt,
And know that you have been blessed, for you have seen
The inner beauty that many others cannot see.
You can look beyond the disability and take pride
In knowing the child will always be part of your family.

More on Safe and Sustainable - proposed changes to children's heart surgery service in the UK

Spent this morning at a Health Impact Assessment stakeholder forum where we discussed the impacts, mitigations and opportunities of the proposed changes.  As many people as possible need to provide their comments using the response form before July 1st, this is your opportunity to feed into the process.

Before you complete the form, you might find it helpful to at least take a look at "Safe and Sustainable: A New Vision for Children's Congenital Heart Services in England - Consultation Document" to increase your understanding of what the process is trying to achieve and how they arrived at the four options that are under consideration.  Although you may have read media reports that suggest this a cost cutting exercise, it's important that you understand that 

professional associations and national parent groups, who take a global
view of these issues, have repeatedly called for a review of children’s heart surgery services.

Although this is a direct quote from the consultation document, I include it here because I know from personal involvement that this statement is true.  The aim of this whole process is ensure that this is a national service, with national standards that ensure that all children get the very best care wherever that is provided.  Whilst the majority of families are already happy with the care their child is receiving, realistically most have no experience of another unit with which to compare, but national support groups are ideally placed to see a more national picture and have been heavily involved in seeking these changes.

 

Parents are naturally concerned about how these changes will affect them personally, but in order to make the best decisions, it is vital that everyone looks at the proposals impartially so that the focus is on the most important issue, that of giving children the very best chance in life.  When thinking about these changes we also need to understand that they are not recommending closure of any units, the proposal is only to reduce the number that actually undertake surgical procedures, which would mean that families will only potentially have further to travel when a child is having surgery and for nearly 98% that will be only once or maybe twice in their life.

We need to ensure that during these times, families are given better support to overcome the difficulties that may be compounded by being further from home but whilst recognising these and other issues, we cannot lose sight of the evidence that supports the need for change.  Evidence that shows a relationship between the number of procedures and surgeon undertakes each year and the outcomes for the children involved, not just looking at mortality but also morbidity.

It's also worth remembering that whilst this is a national process, it will not be the first time that a heart unit has stopped carrying out surgical procedures yet remained as a cardiac centre.  During my 20 years involvement I have seen several similar changes - in Scotland, Royal Hospital for Sick Children in Edinburgh sends patients to Yorkhill in Glasgow for surgery, Manchester Children's Hospital uses Alder Hey Children's Hospital in Liverpool, the University Hospital of Wales in Cariff sends patients to Bristol Children's Hospital and when the Royal Brompton and Harefield Hospitals combined, surgery stopped at Harefield.

So take a look at the consultation document, at the very least read section 2 and then make sure that you complete the response form online or request a hard copy and check out details of the consultation events for one in your area where you will have the opportunity to hear the proposals in more detail and discuss your personal concerns.