UP SYNDROME

Frank Stone, a name you may not have heard, a name I had never heard of till a couple of days ago, when I received a video of him speaking at the US Congress on the matter of abortion of fetuses with Down Syndrome, where he argued it is immoral.  He said the following:

” Richard Dawkins, expressed the opinon that it is immoral to have a child with Down Synrome, he said he believed that our lives bring more suffering in to the world than happiness, I just don’t know what rock he has been under for the last 50 years.  We no longer lead the short, unhappy lives in instituations that he seems to imagine. I really am the Actor, Author and advocate that is described on my business card.  I speak to over 50 audiences a year , with a motivational message of hope, I have just returned from a promotional tour of the United Kingdom with my co-star from Touched by Grace. I have been to the white house twice ” ……

He ends with this statement ” I teach people all the time not to underestimate others, just because of how they look, God didn’t put me here to increase suffering.  He put me here to incease accepetance.  My life is worth living.”

Frank has been a public spokesman for those with Downs Syndrome for many years.

Denmark, since 2004 have offered all pregnant women a nuchal scan, this has increased the number of abortions involving children with Downs Syndrome dramatically. last year a staggering 98% of pregnant women who were shown to be carrying a baby with Downs Syndrome (DS) choose to have an abortion.

A baby is usually born with 46 chromosomes, but a DS baby will have an extra copy of chromosome 21, this results in both physical and mental issues, which can range from mild to severe, high functioning or low. It is not hereditary  and there is no known cause.

My brother, Eli, is one of those lucky ones to be born to parents who truly cherished him, even with all those many many challenges, even when the Dr’s were surprised that my parents choose to “keep” the baby they had given birth to, even when speech therapy, occupational therapy was a huge cost, even when they had to beg all the schools to accept their little boy, never once did they give up, or show any sadness, bitterness or regret.

Through my brother we have become acquainted  with many boys/girls/men and women who have special needs, currently my brother lives in an assisted living flat, there are carers on site around the clock, but each person living in the block has a flat with their own kitchen and utilities, they can choose to eat together downstairs or in their own flat.

I could choose now to write about the daily challenges my brother has ( making himself understood on the phone due to difficulty speaking clearly for example), but instead I would like to focus on the positives, because, to be honest, that’s what my brother does, he focuses on the good in his life.

So, here is a list of  positive attributes I have learnt from him, these lessons I have learnt are not through Eli preaching, lecturing or telling, they are lessons I have learnt through being his sister , and I think our entire family has learnt from him.

  1. Happiness with life: I have rarely, in all the 30+ years I have known my brother, seen Eli truly unhappy, there have been times that tragedy ( for example the death of my father) has caused him heartbreak and trauma, but, his life on the whole, has been led with true happiness, it is not unusual to see my brother walking down the street, headphones in his ears, singing loudly to whatever song is playing. He has so many obstacles, yet he lives with such genuine happiness.
  2. Friendship: The majority of the community knows my brother, he is often in the local  newspaper ( in fact he considers it a travesty the weeks he is not in) and he can not walk down the street without someone calling out to him, or giving him a hug, often, he will have a nice chat with someone, or will call out to someone, the conversation that usually follows is this:   Me: “Eli, who was that”, Eli “My best friend” Me “that’s nice, what’s his name” Eli “I don’t know”….. So, it doesn’t matter that Eli does not actually know his “best Friends” name, what matters to him is that someone out there took the time to be his friend, to smile at him, to say hallo, and that is what a friend is. Eli has a best friend who is also his flatmate, his friend’s speech is a lot more unclear then Eli’s but they have a true bond, Eli often being his friend’s translator etc.
  3.  Never to Judge: However hard we try, most of us ( excluding you of course) are somewhat judgmental, we look at how a person dresses, car they drive, job they do, house they live in, and make baseline judgements about the person.  Eli does not do this, he doesn’t care what house a person lives in, or what car they drive, what he cares about is kindness, and to him, people who are sincere, genuine and kind are the ones who matter.
  4. Listening: uhh, writing the word listening, when it comes to Eli makes me smile, I come from a large family, there are 7 of us, all married except for Eli, all with children, my mum’s house is the central meeting point for all of us, a typical family event will include, a lot of shouting to be heard, followed by a lot more shouting to be heard. Eli though, can sit, silently throughout a meal, which is something I don’t think anyone in my family will ever achieve ( sorry guys) .  He is truly a man that enjoys his food, so that  could be the reason he is so quiet ( so that my mum does not notice how much he is eating!) but I believe that the main reason is, he is just happy to “be” and to listen, when we ask him questions or try to include him in the conversation he does not seem overly concerned about answering at length, but, make no mistake, whilst we are all yelling at each other trying to get our points across, Eli is listening, taking it all in and noticing everything that is going on.  Last week, for example, someone started to talk quietly about Eli at the table, Eli was sitting on the sofa happily engrossed in something, but as soon as they started talking about him, a smug smile settled on his face… yup he is all seeing, all hearing, so watch what you say!
  5.  Have good self esteem: this one does not need much explaining, Eli has many many challenges, but he likes himself, is secure in himself and knows he is a good person, loved by many, and has what to give to this world.
  6. Showing love: When Eli was younger the hugs and kisses were abundant, as he has grown the way he shows love has become different, he will call his siblings a few times a day and the conversation will always be the same “How are you, How’s your day, Hows (name of persons children), ok, your busy I’m going, bye” sometimes we may groan when our caller ID shows Eli’s number for the 10th time in a day, but he knows we love his calls. He is always loved and always welcome,  he actually knows the code of the front door of my sisters house, and will often let himself in calling out “only me” as he does, he knows how much he is loved, and how much we love him.

Make no mistake, just because Eli has downs syndrome it does not make him any less smart than you and me, in fact, he is so on the ball, he knows if someone is happy or sad, he is funny, hysterically funny sometimes.

Our lives have been blessed by Eli.

 

Lots of love

sara

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