GO! Open your Heart!

Posted on November 24th, 2008 by god

Arvind here with a really heart warming story about more and more people in the UK choosing to give birth to Down Syndrome babies:-

Many parents opting to keep Down’s babies

I am really pleased to learn that nowadays people are much more accepting and aware of the needs of Down’s Syndrome babies. In my life I have met many people with Down’s Syndrome and I also have a first cousin who is the most loving and lovable person I know.

The best thing for me is that even when a couple know that their baby has been tested positively for Down’s Syndrome before birth, they are choosing to have the baby anyway and bestowing it with all their love and caring.

Who wants “designer babies” anyway?!

When my cousin was born just over 20 years ago, there was a lot less awareness, understanding and even acceptance about Down’s Syndrome. I once even had a visit from a neighbour who was going around from door to door raising a petition against a council run home on our street for Down’s Syndrome people. I was simply lost for words as to what to tell her and where to go. But thankfully, most of the rest of our community was very supportive and it was great to see a number of adult Down’s Syndrome people able to live “normal” lives together.

A few years ago, I was at a musical festival in Hyde Park and star billing was for this amazing musical band called “Heart n Soul” whose members all had Down’s Syndrome. It was a really moving moment and quite a few people around me were visibly moved.

It is good to be human and allow yourself to be vulnerable.

Many years ago, at a wedding party in India, I saw a little Down’s Syndrome boy dancing on the floor, splendidly resplendent in a dinner jacket and bow tie. He was a better dancer than me any day, and I later found out that he had won a number of national awards for his dancing and music, in competitions for “normal” children.

I went up to him, chatted and made friends, and asked him to show me how I could dance like him. A few minutes later his mother came to me with tears in her eyes and said how much she appreciated me talking to her son, as most people just ignored him.

Maybe this was also a cultural thing, being in India, but whatever it was, to me it seemed the natural thing to go up and chat to him. I was drawn to him and just followed my natural feelings.

So many times we all hide our true human feelings and we do not allow ourselves to be vulnerable.

What is the most heart warming thing or act of kindness you have experienced yourself?

Indeed, what is the kindest thing you have ever done yourself?

And in this week of thanksgiving, what will YOU do to open your heart?


28 Responses to “GO! Open your Heart!”

  1. Arvind,

    Oh, you touched my heart the moment I brought up the site with the picture there. It is a good trend that more people are choosing to keep babies with Down Syndrome. Out in California, there is an organized social work system for those who wish to participate. You may already know this, but I worked with adults, teens and children with developmental disabilities for 17 + years. Many were diagnosed with Down Syndrome. So you really touched me.

    By the way, a few facts. There is confusion, but the term is correctly a person with Down Syndrome and not Down Syndrome…our consulting physician/geneticist would set you straight. Wonderful woman. John Langdon Down, an English physician, is known as the father as he was the first to describe it in 1866. It is a chromosomal disorder and the chance of having a child with Down Syndrom increases with the age of the mother especially at the 35 and 40 age markers.

    If a child with Down Syndrome survives 5-6 years, their life span will be almost normal. Compare this with expected life span in 1929 was 9 years; 1961 it was 18 years and now it is 70 years. Most will have mild to moderate retardation. And with supports, some are able to live independently in their own apartments, maintain a job and have meaningful social interactions. (I absolutely love what you did about the dancing).

    People with Down Syndrome has some medical issues in common such as heart abnormalities, gastrointestinal abnormalities, cataracts, recurrent respiratory or ear infections, hearing/vision impairment, hypothyroidism and obesity. There is a higher frequency for a person with Down Syndrome to develop Alzheimer’s Disease. The are more suseptible to obtaining hepatitis B which usually leads to live cancer. Males are sterile.

    I really miss working and educating other about developmental diseases and breaking down the sterotypes that they are “crazy.” They are just like everyone else. However, people with Down Syndrome, tend to like to please others, are socialable, love attention, are endearing and can be really compliant or really stubborn. (When I did behavioral intervention, guess who I worked with?). One sad thing I find is that as they become adults more people tend to ignore them. They have unique features, so usually they are recognizable. So, if someone, anyone says “hi” to you be polite and say “hi” back.

    Sorry, I went on, but I wanted to provide some interesting information (well, it is to me). I’m also a wee bit passionate about developmental disabilities…that was and maybe still is my career of choice.

    Answering the question about the kindest things I’ve done. I’ve done many things for clients and coworkers that were secret and very helpful, but I will never tell what it is that I have done. But, it makes my heart warm to make someones life a little easier. I know what living paycheck to paycheck is like, so when I had the means I helped in different ways.

    On Thanksgiving, I plan to try to open my heart a little more to my husband instead of trying to hide what is really going on with me inside. It usually doesn’t end up very pretty when I try to hide my difficulties.

    • arvind says:

      Wow CC! You are a mine of information!

      Thanks for sharing more facts about people with Down’s Syndrome.

      So do come back and share with us your husband’s response to you being more open on thanksgiving day.

      • Arvind,

        I hope adding so much information didn’t bother you, but it just kept coming out. I guess, I miss work and have learned a lot from the professionals I worked with and from my clients and families. 17 years of my life really dedicated to my work.

        I will share trying to be more open…sigh, not an easy thing to do. Share my heart in that way. But, I know that it is important.

        CC

        • Gee CC, sounds like you need to get involved again! You miss work so much. I bet you could find a way to volunteer to work with people with disabilities and put your years of experience to good use again as well as filling that void.

        • Funkygirl,

          Oh, I have lots of opportunities for volunteering, working half-time or full-time, but due to my illness I cannot even consider volunteering right now. What void are you referring to?

          CC

  2. Svasti says:

    When my sister was pregnant with her first child and going to have that test they do on mothers in their 30′s to check for Downs Syndrome… she very clearly said to me – I don’t care if the test is positive, we’d love her/him anyway.

    Yeah. That rocked my world.

  3. Jim says:

    Cheers for raising this awareness here Arvind and such a tough call for parents to be, I’d imagine.

    My heart really opened up at an AIDS orphanage in Bangkok on the way to a charity bike ride to Cambodia…its was a very humbling experience and the kids were full on unconditional joy…..

    **Heart now open**

  4. Bo Snr says:

    Hello Arvind
    A few years ago we were on holiday in Tenerife and one day a young lady arrived. She had a mild case of Downs. Obviously her family knew that she was capable of travelling and staying on her own. At the first mealtime she was shown to a table by one of the excellent waiters and around the buffet all was well. At the next meal she went to HER TABLE and found someone else sitting on HER TABLE. She was very upset that she could not sit at HER TABLE. I had a word with the restaurant manager and at every meal tim there was a reserved sign on HER TABLE. I know she appreciated that.
    Also her family must of told her, always wear a hat in the Sun. Which she did even in pool .
    At the end of her stay a nice lady in the room next to her had to help her pack, she had never packed for herself before

    • arvind says:

      Thanks Bo Snr for sharing.

      As I keep saying to others, it takes very little to show kindness to others and make their day.

      My first cousin, who is a person with Down’s Syndrome is forever raising our spirits with his straight, no nonsense approach and his sense of humour.

      Every time we have a family gathering, he is the life and soul, and everything revolves around him. What I find really helps him is to treat him as just another adult, rather than being patronising or condescending.

      A year ago when my father passed away, he was really, really upset to have lost his uncle and it was I believe the first ever bereavement of his life. It really broke our hearts and raised our spirits when he came to us the next day with a simplistic handmade sympathy card.

      It is such small acts of love that makes life so worthwhile and makes you realise just what is really important. Now where’s those tissues…?!

  5. A/C says:

    Had to have the test when Pregnant with Moppet….
    Nerve wrecking time…..
    didnt care if she was or wasnt but still the stress of pending results etc made it all the harder…

    I guess at least you get to know if there is going to be complications, but sometimes I think we rely to much on technology.. 50 years ago they wouldnt have known.. but then again some would have dumped them at the local Orphanage so some things change with time is a terrifc….

    Not long ago I had a few random acts of kindness happen…

    But the one with sticks out inmy mind was Lib, going to my Great Grans address and taking photos of where my family came from in England, the two houses next each other, 300 years of my family history…. the houses where lost in the london Blitz, but it was great to see the area, the houses which took there place and those original still left standing…. I could never thank Lib enough for this.. My Grandmother had never seen them, and cried when she where her mum came from….. beautiful…
    Thanks Lib…

    My act of Kindness… made an old lady Tea and scones one with jam… she was homeless, and we had been talking she mentioned how she love them and hadnt had them for year…. she always stayed at the same place.. so the next day I brought them to her.. she was so happy, and we sat and chattered.. such a nice elderly lady and so lonely… anyway I had to go and promised to pop back the next day, but she died in the night, natural causes I guess, Not the scones… but I like to think in some way I gave her a nice last day…

    • AC,

      You gave her precious gifts of friendship, respect and dignity. I’m really glad that you were her friend for her last days. Okay, need more tissues.

      CC

      • arvind says:

        Great story A/C :-)

        So true that we just don’t know what one act of kindness can do for another human-being – it could be the last time you see them and in your case that is just what happened.

        As they say, people will remember not what you say to them or do for them, but how you made them feel.

        • Arvind, I feel like you are my brother or something by the things that you write because they always resonate with me. Well, maybe mango didn’t…yuck, but I had a dream about eating mangos last night.

        • arvind says:

          Thanks CC!

          We are after all connected – I guess it is just that some people are more open and aware of the wider picture and about our own greatness as human beings.

          United in love – and on Flowers (well, most of the time :-) )

        • A/C says:

          I do believe in cause and effect…

          I am so pleased I could make that little bit of difference… and make it special in some small way…

          Every person is connected inway or another… and you just to need to look sideways to see the little strands…

    • Lib says:

      Aaah, now worries AC, it was seriously a pleasure.

      And I don’t mean to laugh but the ‘it wasn’t the scones’ comment was really quite funny.

      I do try and be kind every day, not in any change the world measures but I try and be aware of how people are feeling (eg down) and pep them up accordingly.

      • A/C says:

        I thought I should add that.. just incase.. I was waiting for a sure it wasnt the scones to be thrown in there…. Angry or Gareth or someone.. hehehehhe…

        YOu truly did make mine and my Grans year… with those… :)

        I have a magnet which says.. those who plant seeds of Kindness, harvest love… I like to think its true..

  6. Svasti says:

    Guys, I’m sorry but I’ve just remembered this sad story, currently playing out in Victoria, Australia (where I live).

    http://www.news.com.au/heraldsun/story/0,21985,24708809-2862,00.html

    A doctor who moved his family from Germany – Bernhard Moeller – and who is the only doctor in a region called Horsham serving around 22,000 people is currently having a battle with Australian immigration to be granted residency. Why? Because one of his children has Down Syndrome. :(

    Immigration are saying his son will be an undue burden on the Australian medical system. This is their argument. He’s currently appealing the situation, and many, many Australians are behind him. It all looks like so much red tape!

    I mean, the man is a doctor. So, that’s a whole lot of medical attention he can take care of himself. His son goes to a normal school and has a little bit of aid but not much! And – those 22,000 people need this guy!

    Its such a sad story and one that makes me angry too!!

    • Svasti,

      I had recently read about this story and I was getting so angry that I had to stop. I was going to write a post about it because the doctor is inspirational, but I would have to get into the part that really angers me. Again discrimination, stigmas and sterotypes.

      CC

      • arvind says:

        What a sad story! It seems like a case of “Bureacracy Rules” again/

        I can see why such rules may have been made in the first place but surely his son’s needs come first.

        Also, regardless of the father being a Doctor and an economically and medically valuable asset to the community, his son is another human being too and that should come before all else.

        I do believe common sense and decency will prevail. Let us hope so anyway.

        • Svasti says:

          If there’s one thing about Aussies – when they get angry enough (mostly we’re all pretty laid bacK) – then watch out!!

          I am truly hoping that enough of us will get behind this family and there’ll be enough media attention to stop the madness… one can only hope.

          Fingers crossed, eh?

          Then again, Australian immigration has done some pretty stupid things in the past.

  7. Very true, we think to do something but we hesitate to do so by assuming that what other people will think about me if i will do such stuff. This is very true that we should respect all the human beings whether he/she is perfect or imperfect.
    what i have learned is, each person having some special qualities, so we should respect those qualities to make this world a wonderful and loving place.

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