THE BIG ONE……….19th March 2016 we will be hosting a gala dinner at The Pines Hotel, Chorley. This is to tie in and celebrate World Downs Syndrome Day on the 21st. Further details will be released but we will start selling tickets very shortly and the event will comprise of a three course meal, entertainment and various fun bits and pieces.
Chorley striker Josh Hine has signed up for the Staffordshire half IronMan in June 2016. He has expressed a desire to use the event raise awareness of Twincess by doing it in the official Twincess triathlon kit. fantastic gesture. Thanks Josh
Here is a piece done by our Grandma at her local church in front of the whole congregation. This has NEVER been published despite being 12 months ago because She was so nervous and emotional but it’s a great piece and shows the importance of ATTITUDE AND ACCEPTANCE. It is also aimed at highlighting the ripple effect of a DS diagnosis throughout the family.
“God never gives you more than he knows you can handle”
Comforting words from the Bible but with the events that would unfurl for me and my family they were words that didn’t seem realistic or possible for me to believe.
Up until 2 years ago I thought I had a pretty uneventful normal but still wonderful life. I had a loving, caring family and friends who were always there for us. My husband and I had 2 children now married with 3 grandchildren between them and whom we all treasured. So 2 years ago, when my son, Matthew and daughter in law Jodi, announced they were expecting twins we were all delighted. The twins we found out a little later were identical girls and so they became affectionately known as the Twincesses. Finlay, their little boy was 3 years old at the time so we all knew life would get a whole more hectic.
The girls were due to be born in the August of 2011 but complications meant they had to be delivered early at 34 weeks and taken straight into the neo-natal unit at Preston Hospital. It was such a relief when both were successfully born, even though they looked so tiny in the incubators, and wires all over their tiny bodies.
It was 3 weeks later when we would hear the news that Doctors, fearing the girls were not developing as they should, suspected there was a strong possibility that they had Downs Syndrome. Tests were carried out, the results of which would take a week to be back with us. I can’t begin to tell you how long that week felt or what thoughts were flooding our minds. I prayed every day that the girls would be ok and for God to take away our fears of what could and would be if the results were positive.
I’ll never forget the look on Matt and Jodi’s faces when they walked through our door on the Friday evening after being at the hospital all day together waiting for news. They looked frightened, lost, emotionally and physically drained – the results were positive and both of our beautiful girls had DS. We sat in a bewildered silence, no-one knowing what to say or do – just shell shocked, scared and fanatically worried. How would we cope with this – whatever this was? What did it all mean? How would we get through? What would the future hold? We could find no words which would comfort any of us.
I have to admit none of us knew anything about DS, but it all felt very scary. My own thoughts as a grandma were how to protect these vulnerable little girls from a world which can seem, at times, so cold, heartless, cruel and judgemental. I spent sleepless nights preparing for the future that I couldn’t comprehend and so no wonder I never found any answers. I felt as a family we could be there for their every need and protect them while they were children but what would happen when the girls reached adult hood? What would they make of our world but more importantly what would the world make of them? There were so many myths and misunderstandings surrounding this condition that worried me to death. Fortunately I have since learned that most of those worries are simply that – myths and misunderstandings and I also found out that spending so much in the future worrying what might be, stops you from living in the here and now and missing so much of life which is good. Before the girls came out of hospital we had it confirmed that Abigail was deaf and Isobel had a hole in her heart!
God never gives you more than he knows you can handle.
Those words kept coming back to me – but I felt I couldn’t handle all this hurt and confusion and fear that was happening.
However the day after we had the news, I had a message from Matt inviting his dad and I to visit the hospital with Gemma, our daughter. Still lost and bewildered we arrived at the hospital to be met by Matt with a huge smile on his face, full of excitement and anticipation. We were ushered into a lovely bright room where Matt told us that he had permission to bring the babies in for cuddles and kisses and so we waited for him to bring them in. What has happened we asked Jodi, Matt seems so different? She told us that Matt had broken down when they had arrived home that night and having asked himself the question “Why us?” came back with the answer “Why not us? We have been chosen because we can give the girls the life they need – full of love and fun but most of all an acceptance for who they are”
As he wheeled the girls in, I think we were all touched by his Positivity, his love and commitment for his children – If he could, we could!! He talked excitedly about his vision to set up the Twincess Campaign, and so a Trust fund was set up to prepare for their future needs.
And so our journey began:
I have to admit that first year was exceptionally tough and tiring for us all. Isobel was rushed to hospital 3 times by ambulance on a blue light and on the last occasion Abigail too joined her in the next cot – both very poorly babies! I think we all did some research on the net to learn more about the condition but the reading was even more scary than anything I’d already thought so I decided it would be better to just face things as they came up and it was then that I put all my trust and faith in God – “He promised not to give me anything I couldn’t handle so I now prayed for courage and strength to deal with those challenges in life that lay ahead.
Life was never going to be the same, this journey would last a lifetime but life is about having the right attitude, with the love and support from our family and friends, and for me as a regular worshipper in this congregation, the support of many kind people in this church, we would get there. There would no doubt be lots of hurdles and obstacles along the way but obstacles can also be viewed as stepping stones to success with the right attitude. As Matthew put in his magazine article ‘we’re always looking for the ups not the downs’.
So a little bit about Downs Syndrome:
Downs Syndrome is a genetic condition that typically causes levels of learning disability, characteristic physical features and reduced muscle tone.
Around 750 babies are born with the condition each year in the UK and it affects people of all races, religions and economic backgrounds equally.
The condition is caused by the presence of an extra copy of chromosome 21 in a baby’s cells. As yet, no-one knows what causes the presence of the extra chromosome 21.
Although there is no “cure” for Down’s syndrome, there are ways to help children with the condition develop into healthy and fulfilled individuals who are able to achieve a level of independence that’s right for them. DS in no way causes physical pain and is simply a condition which causes delayed development in a number of physical, emotional and educational areas. The girls receive much support and many interventions from professionals, Paediatricians, Doctors etc in their assessment of their development and weekly meetings with Portage workers as well as Occupational therapists. We can’t fault their care and attention. Only recently, The Royal College of Midwives has accredited a further 3 years funding to ensure Midwives and related Healthcare professionals have an up to date, balanced and accurate understanding of DS and living with DS in 2013. To change terminology when we hear Doctors talk about the RISK OF DS NOT THE CHANCE OF DS.
The girls are now growing in strength and ability and have boundless energy, getting up to all sorts of devilment with great character and humour and even though they are identical twins are very different in personality. However, small tasks in their development become a massive milestone and a great reason for us all to celebrate. How much we took for granted with the other 3?? Because of Abigail’s deafness Matt and Jodi have attended signing classes and now the girls are learning to sign along too. (Sign me, chocolate, and more).
Life looks very different two years on and I value and understand those words God never gives you more than he knows you can handle. The girls aren’t here with me today but I have been bringing them to the Tuesday morning service. In 1 of Carol’s sermons she talked about God always being at our side and never failing to give us what we need. Had I not been so blinded by fear in the beginning, I would have felt him there for me all the way.
So why was the Twincess Charity set up? This isn’t any longer about the girls and their needs for the future it’s about others. It’s about raising awareness, changing attitudes and shifting perceptions which do still exist even today. So although the girls’ health and well being are constantly reviewed, monitored and dealt with, there still exist enormous gaps in our system to help the parents and families with that sensitivity when first hearing those words “your baby has Downs Syndrome; From preventing families of feeling isolated and different. It is only by raising awareness that we gain the acceptance of these girls, as with others with DS, as individuals and not as an odd set of chromosomes. We want to give families who find themselves in our position a real boost to look at life with DS with confidence, to see beyond the genes to the individuals that they are. People with DS do fall in love and get married, they do have jobs and careers and aspirations – prejudices are learned and our other grandchildren just see the girls as Abigail and Isobel.
Recently I saw a fantastic poster of a beautiful little girl, probably around 6 or 7 years of age. She had DS. She had the most gorgeous long blond hair with a smile to melt hearts. She was standing in her ‘Onsie’ with green ugg type boots and the caption read:
‘When people stare at me, I know they are just taking notes on how to be Awesome!’
Matt’s article in the Parish magazine says:
‘I can honestly say if there was a tablet to take to remove the extra chromosome from our girls then we wouldn’t take it; their condition is what makes them so beautiful, funny and great to be around’
Downs syndrome is not a tragedy – ignorance is the tragedy!
As a family, we thank St Katharine’s for choosing our charity to help and support our vision for others like us. Those who are struggling to come to terms with DS in their lives and who need to talk to someone who has gone through the initial pain and fear but who now sees; ‘The ups and not the downs’
And no, ‘God never gives you more than you can handle’ Just Believe!!