Sequenom - a biotech company - has recently tumbled from a market cap of around a billion dollars (six months ago) to about US $ 200 million. The reason - its most prominent pipeline product (a pre-natal blood test to diagnose down syndrome) seems to have run into trouble due to "mishandling of results".
While arguably this is not the last such attempt we have seen, I am tempted to imagine a hypothetical scenario that such a test was available when my little angel, Shikha, was born. Had I and my wife known, before her birth, I have no doubt we would have opted for abortion (A painful truth that I find extremely difficult to confess to). However, having been through all the experiences over past thirteen years, I believe that would have been our worst and most unfortunate decision.
The decision we would have taken before Shikha's birth would have been based on our ignorance. Such a decision would have robbed Shikha her right to be born and realise her potential. That would have been such a tragedy.
It, therefore, disturbs me to imagine the world after several decades from now. Possibly there would be no persons with Down Syndrome on this earth. A diagnostic test would be discovered; which every expecting mother would be advised to undergo; and upon testing positive they would be "counselled" on why it makes sense to not pursue with the pregnancy. Given the increasing pace and stress we all face in our lives, why would anyone agree to take so much pain to bring up a child that requires so much care, attention, efforts, costs and emotional energy.
Extend this scenario to various other conditions. Are we increasingly looking to "homogenize" our species? Anything that is "different" is getting "differentiated against". When a child with Down Syndrome becomes an undeniable reality, we preach "acceptance". However, when faced with a choice, we would opt to prevent them from taking birth.
A society that counts its costs towards growing and "maintaining" persons with special needs; does not blink while investing billions of dollars into companies that would prevent their birth. After all, the mathematics driving these investments is mind-numbing. Imagine each expecting mother going through these preventive tests. How can you beat these numbers with the "emotional value" that the persons with Down Syndrome add to our society? How can you beat these numbers with the "richness" that the parents and families experience in their lives? How can you beat these numbers with the noble idea of "inclusion" and "sensitivity" that every child with Down Syndrome is an ambassador of? How can you beat these numbers with the innocent and infective smile and happiness these persons bring for everyone they touch.
Some would argue about the possibility of an alternate scenario where parents get to know of "the truth" and yet opt for pursuing with the pregnancy. Well there are several such notable examples (like Steve Moser whose lyrics I had reproduced in a previous blog) but these are more of an exception than the rule.
So, I have come to a rather painful and harsh conclusion that by investing in Sequenom and other such ventures, we are investing in death of persons with Down Syndrome. Here is me silently hoping against hope that the attempts by Sequenom and other such companies do not ever succeed!
I consider it to be poetic justice that on the same day, i.e. 28th September you had the news of the CEO of Sequenom and a few others being made a scapegoat and the company's fortunes tumbling; and on the other hand, a person with Down Syndrom (Pablo Pineda) won the best actor award for his role in a Spanish film.
May there be more Pablo Pinedas in the time to come. Amen!
Thursday, October 1, 2009
Pablo Pineda shows the way!
Pablo Pineda is an actor. Three days back, he won the best actor award at the San Sebastian film festival for his role in a film Yo Tambien. He has a major degree from a regular university in Spain. Incidentally, he is a person with Down Syndrome.
Seven years ago, in an interview this is what he had to say:
Indeed, he is an example of what children with Down Syndrome can achieve if accepted by the socity and given an opportunity.
Here is to Pablo Pineda for his brilliant achievements and, more importantly, showing the way to the society and to all persons with special needs.
Seven years ago, in an interview this is what he had to say:
"I am just doing my part and demonstrating that I am as competent as anyone."
"I want to work. Where... we will see. As everybody else I want to work in my field, in the area of education. "
"I would like to become an example. I want to demonstrate that if one puts into work whatever one is able, you can do what you want. But beside what I was able to achieve, I also expect society to do its part. I do not want this to be a one way effort. This is a start of success and shows people that we are as competent as the rest. If you are the one who is setting up the barriers, you are then destroying possibilities for others. And, on the other hand it is essential for society to understand all of these things. "
Indeed, he is an example of what children with Down Syndrome can achieve if accepted by the socity and given an opportunity.
Here is to Pablo Pineda for his brilliant achievements and, more importantly, showing the way to the society and to all persons with special needs.
Heaven's Very Special Child
Here is a fantastic poem by Edna Massionilla that has inspired many a parents, myself included, in their quest to come to terms with that little gift from God.
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.
His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.
He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.
They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.
And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.
Friday, September 25, 2009
Undecided Tears
Dressed in a salwar, kameez, dupatta, a leather bag and a pair of shoes; Shikha comes out of her room and says, “Mama, I am going to Office”. Like every parent, Pratima was amused at the antics of her 12 year old. But that smile was short-lived; soon to be overwhelmed by a sad thought, “This will always remain a game for her. She will never be able to go to office.”
Shikha plays many such games – she imitates her elder sister and “goes to college”; she “teaches” several imaginary students; she “treats” her teddy with her “doctor’s kit”; she also enacts a marriage. And that is normal. Every child plays such games. The difference is in the confused, extreme reactions she receives from us, the parents – at times overjoyed with the “dream of the present” and sometimes deeply hurt with a contrasting “reality of the future”.
I believe this is the dilemma of every parent of a “child with special needs.” Every achievement of the child brings “undecided tears” – to an onlooker, it is often difficult to figure out if these tears symbolize joy or sadness.
These undecided tears have been our faithful companion for last 12 years – right since the day an unusually depressed doctor announced the “mixed news” of her arrival with an extra chromosome. These tears have stood witness to many occasions - when she walked; when she uttered the first proper words; when she started to recognize colours; when she started to scribble; and when she spent a full day at the school; when she performed on the stage; when she drew; when she painted; when she swam; and when she learned to balance the basket ball.
For a normal child, these moments “arrive”. In case of Shikha, many of these moments were “made to arrive”. The tireless optimism of her mother, that has kept her going. Shikha’s walk to the podium, at National Paralympics Competition, to claim her silver and bronze is only a culmination of several months of routine training backed by the hopes and aspirations of a mother who wants a fair share of limelight for her “special child”. This aspiration makes her “create time” despite her nagging responsibilities at home and at job and to ensure Shikha goes to the therapist, to the tutor, to the dance classes, to swimming lessons and to the school. And, there is light at the end of the tunnel. It all becomes worth the hard work when you see the child get an extra dose of confidence through these special moments of recognition.
In some ways, Shikha is lucky. Before sending her into this world, God decided to create the setting by sending Shreya as her elder sister who plays the perfect role of the “second mother” to Shikha. Often, as anxious parents, we have been guilty of robbing Shreya of her share of attention. Yet, the “second mother” seems to have a perfect understanding and maturity to shower even greater (exaggerated!) attention on her.
For us, life has acquired greater meaning and richness because of Shikha. Thank God for the undecided tears. They help us enjoy every moment of Shikha’s journey and yet not lose sight of the long and complex road ahead.
Shikha plays many such games – she imitates her elder sister and “goes to college”; she “teaches” several imaginary students; she “treats” her teddy with her “doctor’s kit”; she also enacts a marriage. And that is normal. Every child plays such games. The difference is in the confused, extreme reactions she receives from us, the parents – at times overjoyed with the “dream of the present” and sometimes deeply hurt with a contrasting “reality of the future”.
I believe this is the dilemma of every parent of a “child with special needs.” Every achievement of the child brings “undecided tears” – to an onlooker, it is often difficult to figure out if these tears symbolize joy or sadness.
These undecided tears have been our faithful companion for last 12 years – right since the day an unusually depressed doctor announced the “mixed news” of her arrival with an extra chromosome. These tears have stood witness to many occasions - when she walked; when she uttered the first proper words; when she started to recognize colours; when she started to scribble; and when she spent a full day at the school; when she performed on the stage; when she drew; when she painted; when she swam; and when she learned to balance the basket ball.
For a normal child, these moments “arrive”. In case of Shikha, many of these moments were “made to arrive”. The tireless optimism of her mother, that has kept her going. Shikha’s walk to the podium, at National Paralympics Competition, to claim her silver and bronze is only a culmination of several months of routine training backed by the hopes and aspirations of a mother who wants a fair share of limelight for her “special child”. This aspiration makes her “create time” despite her nagging responsibilities at home and at job and to ensure Shikha goes to the therapist, to the tutor, to the dance classes, to swimming lessons and to the school. And, there is light at the end of the tunnel. It all becomes worth the hard work when you see the child get an extra dose of confidence through these special moments of recognition.
In some ways, Shikha is lucky. Before sending her into this world, God decided to create the setting by sending Shreya as her elder sister who plays the perfect role of the “second mother” to Shikha. Often, as anxious parents, we have been guilty of robbing Shreya of her share of attention. Yet, the “second mother” seems to have a perfect understanding and maturity to shower even greater (exaggerated!) attention on her.
For us, life has acquired greater meaning and richness because of Shikha. Thank God for the undecided tears. They help us enjoy every moment of Shikha’s journey and yet not lose sight of the long and complex road ahead.
God Doesn't Make Mistakes
I came across this touching song written by Steve Moser (himself a father of a girl with Down Syndrome). I could identify with every word, every thought and every emotion. Indeed, God never makes mistakes.
Here are the lyrics:
Lying in the dark, staring at the ultrasound.
The doctor shakes his head, says
And no, she's never gonna look like the other kids
And she may not learn to talk like the other ones did
And I guess she's always gonna walk just a little behind, But I don't mind.
'Cause she lives her whole life without one trace of guile
And she lights up the world with that crooked little smile
and she loves you with a love so pure it just makes you heart break.
And I'd like to tell that doctor,
God Doesn't Make Mistakes.
Sitting in the park, watching all the children play.
My daugher walks up, they get quiet and little afraid.
But pretty soon the smiles come over their face
And they slow their game down just a pace
And I watch as a spirit of kindness abounds
And thank God for that girl
who showed me what life's really about
And she helped me to discover
God Doesn't Make Mistakes
They said something went wrong
But I think something went right
And I'll fight for my baby with all of my might.
'Cause I love her with a love so pure
it just makes my heart break
And I want to tell the world,
God Doesn't Make Mistakes
- Written by Steve Moser
Here are the lyrics:
Lying in the dark, staring at the ultrasound.
The doctor shakes his head, says
"I'm sorry but this baby has Down syndrome.Little did he know we're all the more blessed 'cause she lived.
And I know it's hard to decide,
But she's so fragile that she'll probably die,
And it might be a blessing if she did"
And no, she's never gonna look like the other kids
And she may not learn to talk like the other ones did
And I guess she's always gonna walk just a little behind, But I don't mind.
'Cause she lives her whole life without one trace of guile
And she lights up the world with that crooked little smile
and she loves you with a love so pure it just makes you heart break.
And I'd like to tell that doctor,
God Doesn't Make Mistakes.
Sitting in the park, watching all the children play.
My daugher walks up, they get quiet and little afraid.
But pretty soon the smiles come over their face
And they slow their game down just a pace
And I watch as a spirit of kindness abounds
And thank God for that girl
who showed me what life's really about
And she helped me to discover
God Doesn't Make Mistakes
They said something went wrong
But I think something went right
And I'll fight for my baby with all of my might.
'Cause I love her with a love so pure
it just makes my heart break
And I want to tell the world,
God Doesn't Make Mistakes
- Written by Steve Moser
Sunday, August 23, 2009
Down Syndrome? Thank God!
It was 1996. It was the Fool's day. Shikha arrived late at night. Just when all of us had broken into a sigh of relief, came a message that the doctor wanted to see me. "Well, she is a different child. She is not like other normal children. She is a "down syndrome". She will require a lot of help and support. " This is all the doctor had to tell me.
For the next three days, all I could think of is to keep the news completely to myself (I did not even break it to Pratima, my wife). I remember visiting the British Council Library on the very next day, to find out what exactly this thing called "down syndrome" was; only to return with more questions than answers.
The experience that we (Pratima & myself) went through in the next six months are still etched in out memory. These experiences have made us realise that the best time to help the parents of a special child is when they get to know about their child's situation. It is very natural for the parents to go through the following phases:
Denial - How can this happen to our child?
Anger - Why me?
Guilt - I/we are responsible for this
Enquiry - Let me find out more about this
It is only after one has gone through these states, that one begins to "accept" the situation. In our case, it took us nearly six months before we could keep the emotions out of our mind and say "Okay. So my child is a "special" child. What can I do to make the most of what she has."
Shikha, now 13, is such a bundle of joy. Without exaggerating, I can say she has a wider circle of influence that myself, Pratima and Shreya (my elder daughter) put together. As adults, we find it difficult to relate to others without putting them into "mental pigeon-holes". Possibly this is our greatest disability and Shikha's greatest ability. She can relate to people without applying any colour of the past.
Someone, in some corner of this world may be going through the moments that I went through on 1st April 1996. I would like them to do what I could not - Celebrate. Your child with Down Syndrome is actually a precious gift from Almighty.
Yes, the child has an extra pair of chromosomes.
Yes, the arrival of the child means you will need to re-calibrate your plans.
Yes, you will need to invest a lot of time in your child - especially during the formative period.
You can choose to live this experience with some of the negative feelings that I described above. Or you can choose to ENJOY this opportunity to make a difference to your child. Believe me, when your child grows up, you will find out all the sacrifices made by you, all the efforts invested by you, have paid off. You will realise you have not missed anything while making these "sacrifices". You will realise that the life has become richer for you and has brought you closer to the true meaning of life.
Got similar experience(s) to share? Would love to hear from you.
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