Monday, 22 March 2010

Down's Syndrome Association 40th anniversary

Well last week was a busy week with events for the UK Down's Syndrome Awareness week and of course World Down Syndrome Day on Sunday,  Even then we still have the launch of the new Down Syndrome International website to come tomorrow, so it will take a few days to get everything posted.

I'll start with last Friday evening, March  19th when the Down's Syndrome Association (DSA) held a reception at The House of Lords to celebrate their 40th anniversary.

 Lord Dear welcoming everyone

It was a great opportunity to see friends old and new and recognise the Association's achievements, for although Down's Heart Group (DHG) is a seperate organisation, naturally we have many members in common and in fact DHG actually grew out of parent contact that originated after a letter from our Founder was printed in the DSA newsletter.

It was a lovely evening and a wonderful opportunity for my friend Chuks Etuka from Nigeria to meet representatives of other Down's Syndrome groups as well as individuals.  Chuks was particularly eager to be introduced to Sujeet Desai, following my mention of him and his fantastic achievements during my presentation in Lagos last year.  I think Chuks was very inspired by Suj and he hasn't even heard him play yet!

 The Desai family, Chuks and I

Tuesday, 16 March 2010

Celebrating World Down Syndrome Day

My apologies, I've been very remiss with my blog.  I've been so busy that I just haven't had time to sit down and write sensibly even though I have got some people I want to introduce you to, but that will have to wait until another day as this is all about Down's Syndrome Awareness Week and World Down Syndrome Day.

Several of my friends are posting 21 things they love about their child with Down’s Syndrome on their Facebook profiles to mark World Down Syndrome Day on March 21st.  I thought that was a really great idea and started to put together my own list on the lines of 21 things that had happened to me as a result of having Daniel.

Obviously in his 14½ weeks of life we didn’t even begin to stack up laughs and smiles etc. but I wanted to post 21 important and positive things and that’s where I got stuck.  If I include things like experiencing him going through heart surgery and his death I can probably get there, but I don’t see those as important in their effect on me other than perhaps being able to use that experience to help others.

Those are some of the sad facts surrounding Daniel’s legacy, but overall I see his birth as a very positive life changing event for me and in celebrating World Down Syndrome Day I want to focus on what the short time we spent together has given me. 

So then I thought that perhaps I could expand some of the things I had jotted down, for instance I noted that I had met many inspiring individuals with Down’s Syndrome, perhaps I could mention them by name.  But where would I begin?  And even harder, where would I finish and it would certainly be a list of much longer than 21 names.

And if that list was going to be too long, the list of the friends I have made, both personal an professional would also be too long and how could I quantify it anyway as there are many people that I have never actually met but consider to be my friends. 

I could perhaps look at the places I’ve travelled as part of my journey, including Singapore, Nigeria and Canada, but what about here at home in the UK?  Oops the list just got too long again.

Finally I have come to the conclusion that perhaps instead of 21 things to represent the chromosome, I should list 3 things to represent the triplication of that chromosome.  So here they are, the 3 most important things I learnt from having Daniel:

  1. The understanding that everyone has a value and purpose in life, if we just open our hearts and look beyond the labels society attaches to people to see it.

  2. Even seemingly small and insignificant acts can have an effect on others, so even when you feel helpless in a situation, just the simple touch of a hand may bring untold comfort to a friend.

  3. Unconditional love brings not only acceptance but also allows you to acknowledge your inner weaknesses and doubts and removes the guilt you have for ever having faltered.

So to everyone whose life has ever been touched by someone with Down’s Syndrome, I congratulate you on having experienced such a joy and would like to ask you to join our global community in celebrating World Down Syndrome Day on March 21st.