Last week we celebrated Malakai’s fifth birthday, which was a
resounding success I must say! By success I mean that he felt loved,
appreciated and validated on his special day – of course he enjoyed unwrapping
his presents, but his face just lit the room up when we sang happy birthday to
him first thing in the morning, and again at school, and again that night with
family. My heart just swelled when I saw his pure joy – what a good day!
Malakai’s birthday is always a little bitter-sweet for me
because it was also a day of total anguish. Instead of enjoying our little baby
boy, we were enveloped in a sense of utter devastation when we received his
diagnosis. I have never cried so much, and they were certainly not happy tears;
although now I wish they had been.
I clearly remember that the only thing I knew about Down
syndrome when Malakai was born was that people with Down syndrome apparently couldn’t
pretend (which is a total fallacy by the way). Odd ‘fact’ really… Oh, and I
knew it was a terribly bad thing, that my baby was somehow ‘broken’, and I was
probably the one who had broken him.
Oh how little I knew then… and oh how lucky I was that a voice
(eerie… yes) spoke to me in the days following Malakai’s arrival; a voice that
told me that it was simply nuts that a blood test could tell me who my child
was going to be. Only he could tell me that!
So it was rather fitting that the day before Malakai’s fifth
birthday last week I was sent a press release about a new prenatal test for
Down syndrome that is incredibly accurate and can be done at 10 weeks – so early
that a termination could be done without any pain or any fuss…
Now don’t get me started on my views on ‘medical termination’
– they’re obviously very biased, and for good reason, I’ve lived it and I know
much more than any medical professional. I know about the Real Deal of life
with Down syndrome, while they know only cold medical facts, statistics and
beliefs that a person’s blood can predict their future.
No, I am not going to talk about medical termination… and
how everyone will feel one day when they’ll be able to prenatally diagnose
autism or depression or alcoholism or bad breath or propensities to job hop… because
that day will come… and then what? Should we just get rid of those pesky little
problems as well?
And I am not going to get all emotional and talk about how
this impacts me as a mother of a child with Down syndrome… and how I am frankly
pissed off and terribly saddened that the world out there is getting so excited
about a way to get rid of children like my own in quicker and more effective
ways.
I am also not going to talk about being Pro-Life, because I truly
don’t consider myself to be in that category either.
What I am going to talk about is Pro-Information.
I simply want to see couples making informed decisions based
on accurate and up to date information. I can almost guarantee that once a
positive diagnosis is received with this new wonder-test the couple will be
surrounded by a bunch of doctors and geneticists and given a list of what is wrong
with their broken baby. I don’t believe the parents are ever put in touch with
a real family who live a real life filled with real love, real joy, real
accomplishments and real proof that a life with Down syndrome is worth living.
If I imagine how little I knew of Down syndrome when Malakai
was born I can thank my lucky stars he was a little beautiful and cherubic baby
lying in my arms full of expectations of love. When I was told all the things
that could be wrong with him, I was given the benefit of touching his soft
skin, breathing-in his new baby smell, peering deeply into his startling blue
eyes, and of course the voice that spoke to me… What about a couple who have no
real connection to a 10 week old foetus? What about them? They have nothing to
hold on to…
And so what, you may ask?
Well, this kind of new test has been available in the USA for
some time and Down syndrome support groups who in the past would welcome
between 8-10 new families a month are now opening their arms to only 1-2
families. There has been a 90% drop in the number of babies born with Down
syndrome in some areas, which can only mean one thing – we can thank modern
medicine for finally finding a quick and effective way of exterminating a whole
group of people. And why? Because they can.
And here I thought the eugenics movement had been relegated
to the history archives alongside Hitler’s master race, mass forced
institutionalisations and sterilisations. But now, it is alive and well and
being dished out without the most important ingredient – the information
required to make an informed decision.
I believe that if given the chance to really see the truth of
life with Down syndrome, someone somewhere would choose differently. They would
choose the road less travelled, they would embrace a new way of seeing the
world, they would relish as I have in cutting out all the bullshit of
competition and expectations in favour of just being. Being loved. Being happy.
Being real.
“Oh, I really wouldn’t like a child who gives the best hugs,
loves unconditionally, says please and thank you with real sincerity, shares
with abandon, dances everyday like no one is watching, makes friends, changes
people’s mind sets, and is generally a child that I am so proud of that my
heart could explode…” said no one ever.
*Disclaimer:
I am not for one minute saying that raising a child with Down syndrome is
simple or easy or all roses and sunsets – but the same is true for any child. I
know, I have a typical child and a special needs child and they both challenge
me as much as they give me utter joy and delight. What I am saying is that my
children are worth it – both of them.
