Claire Sutton

An update from me

20

Just ahead of all the Christmas chat and cheer I thought I would just pop on by and share my latest.

When you are a parent of a child with Special Needs (well almost 16 is more adult than child!) and when you happen to be on the TV too it offers a wonderful and privileged opportunity to share your story and in doing so educate others . I write my blogs and like to chatter about Dan and Tom, Joe and Maddie and all the ordinary bits and bobs and goings on of our lives in and around QVC and I  am thrilled when I hear back from you all and  particularly when I may have helped someone a tiny bit who is starting out on their family journey with a child who is just that little bit different to what they expected or indeed what our world decides is normal or dare I say… ordinary .

There are many superb bloggers around and particularly within the Down’s Syndrome Community some shining lights who take their voices and use them wisely and wonderfully to share the battles and triumphs, to educate and sometimes fight to show the importance of our children within this world. I am incredibly grateful to them but feel I am more a “supporting cast member” as oppose to the “leading lady” which in itself is actually quite funny as all my life I’ve been centre stage!

However the other week I was playing my leading lady role in full, not on a stage or behind a camera a la QVC but as an after dinner speaker for The Inner Wheel Club of Horsham, a wonderful group of ladies whose objectives are ‘to promote true friendship , encourage the ideals of personal service and foster International Understanding’ and the President for this year just happens to be my Mummy.

The President is allowed to also choose a charity of her choice and the Inner Wheel fundraise for that charity for the year of her term. There are a number of charities she could chose, all of whom have incredibly personal connections for Mummy, so I was bowled over when she said she had decided to choose The Down’s Syndrome Association – however it was swiftly followed by “And I’d like you to come down and speak at our event about Tom and how the DSA have helped you through the years”. Gulp. Okay, so yes, of course I can speak – I’m a presenter, that’s my job! TV, award ceremonies, live shows yup no problem but… and hear is the gulp moment… I have always realised that I’m still so emotional when it comes to talking about Tom and whilst many have suggested I would be a great ambassador for Down’s Syndrome I just worry that I would be overwhelmed and the wobbles would come.

pic-1

Well, I was right. I was… (overwhelmed) and they did come (the wobbles!) but do you know what, it simply didn’t matter.

I told my story of Tom’s birth, I shared my thoughts and my worries I spoke about the amazing work the DSA do and the support they have been able offer in all areas for us as a family and for so many new, frightened uncertain parents. I was honest and yes I did struggle a little when reliving some moments, but I got through it and I was proud of myself. I chose to read out the poem Welcome to Holland which was sent to me from a number of QVC viewers amongst my 250 letters and cards when Tom was born (they are all still safely up in my loft). It is a poem which many find comfort from and I for one recognised certain elements within it and it has lived always on my fridge. The ladies said afterwards that they had found it to be a lovely and thought provoking piece. I did finish with a very funny story about Tom (believe me it was hard to choose just one!) which meant it ended with laughter and was very positive and upbeat.

Afterwards I was presented with a cheque for The Down’s Syndrome Association from their first fundraising event. It felt so special to be a tiny part of something which is helping an important charity continue to raise awareness and deliver vital support, so a heartfelt thank you to all the fabulous ladies from The Inner Wheel Club of Horsham.

Claire Sutton's son Tom

As I said at the start of this blog the fact I am on television did indeed give me a cheeky treat in the guise of an unexpected invitation for Tom to attend the Special Olympics Great Britain Activity Festival at the Copper Box Arena, Queen Elizabeth Olympic Park where hundreds of youngsters in London were given the chance to have a taster of many different sports. SOGB is a sports training and competition programme for all people with intellectual disabilities across Great Britain. Tom it turns out was really pretty fabulous at canoeing – they had a static machine there, quite how his skills would translate to the open water I don’t know, but he impressed the teacher and we came away with some email addresses to follow it up if we wanted to.

After my netball prowess was cut short before it properly began! (following the injury to my ankle in July where I severed a tendon and tore another two) I watched Tom with great interest and was super impressed by his goal scoring and his technique, with a smashing flick of the wrist resulting in lots of goals!

We are lucky enough to have a SOGB group near us which Tom goes to on a Monday, though as yet no competitions… so far!

Dan and I came away super impressed and inspired, in particular by Ian Harper a SO Athlete who has competed in a number of National Games. Ian gave a wonderful speech and when asked how he would sum up his SO experience so far in just one word he said “Joyful”. That one word says so much and was pretty much how I was feeling after that day…well that and proud, proud of Tom, proud of all the people with differences both physical and intellectual and proud to have a connection with so many wonderful people changing lives.

I shall be back super soon talking all things Christmassy so until then,

Take care,

Love Claire xxx

BBC News were filming the event, the video is below showing the news report.

Here’s a link to The Down’s Syndrome Association should you need any information

Here is the link to Welcome to Holland 

20 Comments

  1. Diane November 30, 2016 at 8:12 pm -  Reply

    Hi Claire, it’s Diane we have ‘Holland’ in common & you have seen my Daughter on a Harley Davidson!
    You, your mum and all your family must be so proud of Tom, his achievements and aspirations, no one other than his Mum & Nan that know him best could deliver such a heartfelt inspiring insight.
    The DSA provides lots of resource that we continue to use when necessary and pass it on for information for others when supporting our Daughter, the Downs Heart Group (a smaller lesser known charity) has also been of considerable help over the years.
    Best of luck to Tom, he looks a natural with the canoe practice. X

  2. Liz November 30, 2016 at 9:06 pm -  Reply

    Thank you for sharing your story Claire. Great to hear about the support on offer for those who need some help and how Inner Wheel will be doing their bit to contribute. Xx

  3. pamela Richards December 1, 2016 at 4:04 am -  Reply

    Claire reading your story about your wonderful young Lad Tom being a Joy! Well that is just what life and Families are about we are all a wee bit different and you are truly Blessed, Cheerful and Happy after reading this Blog xx

  4. Claire Sutton December 1, 2016 at 4:36 pm -  Reply

    Diane, hi there again! Always lovely hearing from you- I know of the Down’s Heart Group too, we were extremely lucky Toms heart didn’t require surgery , but they were still in touch in those early days. Thank goodness for any support network large or small I say! Keep me updated won’t you , I so love hearing from you xx

  5. Claire Sutton December 1, 2016 at 4:36 pm -  Reply

    Isn’t it marvellous Liz, and Thankyou for your comment , I do appreciate it xx

  6. Claire Sutton December 1, 2016 at 4:38 pm -  Reply

    Oh Pamela, that’s made my day ” cheerful and happy” Thankyou soooo much for being in touch , much love Claire x

  7. Christine December 1, 2016 at 5:33 pm -  Reply

    Hi Claire what a lovely blog about your son you should be proud.
    Take care. X

  8. Susan December 2, 2016 at 5:18 pm -  Reply

    Hi Claire, a fab blog written about wonderful tom. That’s great your mum is president and that she chose his charity. I’m sure you were emotional and nervous but what a brilliant story to tell so far. I hope tom enjoys canoeing if he takes it up! Keep us updated! Glad your ankle is getting better. Can you share your exercises? X

  9. Sue Barrick December 2, 2016 at 7:56 pm -  Reply

    I love hearing about Tom especially as my son Ben also shares the specialness of Downs. Ben is only 12 but the time has passed so quickly and like you we have found the DSA and its information invaluable.
    Have a lovely Christmas xxx

  10. Judith Lennon December 4, 2016 at 1:59 pm -  Reply

    Hi Claire
    Beautiful story and I ‘m sure many at that meeting left with food for thought. You are one true lady and a lovely caring mum and I’m sure you will have had many “moments” good and bad when life really tests you. Just keep on being you and you and your family will continue to thrive. Judith xx

  11. Claire Sutton December 5, 2016 at 10:02 am -  Reply

    Christine, Thankyou so much xx

  12. Claire Sutton December 5, 2016 at 10:06 am -  Reply

    Susan, Thankyou for your lovely comment , it was so nice to read this morning – just in from being signed off by my consultant !!! 5 months on!! Phew, no lasting issues for me- my physio was super,slow and steady – I had a wobble board , lots of lowering the ankle on the edge of the step , raises and very importantly was the stretching of my Achilles and calf – they became so tight and gave me issues – I think the secret was slow and lots of them which I did whenever I remembered in weird and wonderful places !! Thankyou for asking x

  13. Claire Sutton December 5, 2016 at 10:09 am -  Reply

    Sue, Thankyou, I hope Anne is doing well and is happy – it really does race by .. I’m wondering when if ever Tom will grasp Father Christmas is us!!! Do I carry on , or do I say at 16 he visits littler ones- oh I don’t know if I can!!! He’s excited and writing his list 🙂 happy days- my love to you and your family , I hope Father Christmas is super kind to Ben too! X

  14. Claire Sutton December 5, 2016 at 10:10 am -  Reply

    Judith,
    Gosh you made my eyes prickle with your lovely comment- I Thankyou very much ! Xx

  15. dee December 6, 2016 at 11:14 am -  Reply

    what a lovely blog, the whole Holland thing really struck a cord with me. My son was born at 26 weeks and suffered a catastrophic bleed to the brain. Ironically we were in Italy on holiday and six weeks later we came home alone. I’ve always said that our life now is not worse just different and its good to see I’m not alone xx

  16. Claire Sutton December 7, 2016 at 10:28 am -  Reply

    Oh Dee…. Words are not sufficient .. I send you my love and thoughts xxx

  17. Melanie Raine December 8, 2016 at 1:37 pm -  Reply

    I love reading your blog. I remember being 20 weeks pregnant with my youngest daughter and the midwife came knocking at my door one Monday tea time telling me some of my tests showed it was likely my baby has Down’s Syndrome……anyway to cut a long story short she wasn’t born with Down’s but with a congenital heart defect. Although her early years went fairly smoothly she had spent her 13th birthday in hospital and had her first heart surgery on her 15th birthday followed 9 months later by a 9 hour open heart surgery then back again three weeks later. She is now 23, she will require more surgery however she trained hard, fought hard and is now a sucessful business owner , a fully quallified beauty thetapist and an amazing award winning nail tech. Like you, our family have and do ride the rough times and also thrive on the amazing times and having read the ‘Welcome to Holland’ poem so many times, I can completely relate. I also have three children like you and its so lovely to see tham all together, sometimes arguing, sometimes laughing but always there for each other just like yours. Tom is an amazing young man and you are an amazing Mum 🙂 x

  18. Claire Sutton December 13, 2016 at 8:31 pm -  Reply

    Melanie,
    Gosh what a roller coaster you have and are riding. It was lovely to hear of your daughters successes.you must be so incredibly proud of her and your family . I can only imagine the fear you must have gone through during her operations… Thankyou so very much for writing back to me. I hope you have a wonderful Christmas and year ahead. With love , Claire x

  19. Kare December 29, 2016 at 5:22 pm -  Reply

    Wept at ‘ Welcome to Holland’ – I have a special needs boy, well he’s 14 now! But when he was diagnosed with Autism when he was very small, I thought nooooo, it’s not supposed to be like this! However, he leads a rich full life, he’s happy and funny and although he can be very CHALLENGING, I would rather be in Holland than Italy any time! All is not lost when someone has a disability, it’s just different that is all. Very best wishes, K x

  20. Chris Page January 5, 2017 at 3:31 pm -  Reply

    Dear Claire, I have witnessed what a good Mum does for a child who is Disabled. There is no User Manual, especially when you are an unexpected surprise as I was to my Mum in 1968 when there was no prenatal screening for Spina Bifida. You just have to knuckle down and ignore the occasional ignorant comment from people with “normal” children (whatever they are). They are just scared they couldn’t cope in your position.

    Tom looks happy, which proves you’ve succeeded!

    Chris xxx

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