To the Doctors Who Favored Science Over Humanity When Delivering Our Son's Down Syndrome Diagnosis
It all begins exactly the same, and I’m not sure whether that makes me want to laugh or to gnash my teeth to cracking point. To snicker or curse, thrust a finger in the air with vigor or shake my head in disbelief.
All. Exactly. The. Same.
It’s that magic two lines on a plastic stick, or (hey! better!) real words like “three weeks.” And it’s then that you know. You know there is someone growing in there. It is precisely the same bliss, an identical uplift, an equivalent joy — when you are about to burst from every pore with every imaginable emotion at once. You are about to become a parent! You’re having a baby!
The very same.
That someone in there, for the most part, he grows the same. He affects you the same as any other. You wake up one day and feel so knackered you cannot see straight. You cannot eat anything that doesn’t contain ginger, or peanut butter, or chili sauce or jellybeans or whatever your slowly bloating stomach demands. Your nose becomes bionic. Your muscles pudding. You find yourself walking to the tube after work with your eyes closed, shuffling down the side of the road to the station, visionless because you know the route and you know the number of steps and you know that once you finally get to that platform you can pretty much fall straight into a seat, whack on your headphones and keep those eyes closed still for a solid hour. If you sleep, you’re magically out cold until the stop right before yours — it seems the mommy intuition begins at the same time as well. Because precisely at your very own stop, like magic, you awaken but still only partially, because you cannot function properly — there is a new life in there, for whom your body weakens because you must sacrifice your entire strength for “it” to become “him.”
The first few months of this whose-body-is-this-because-I-cannot-possibly-be-this-knackered gig and one day you wake up and lo and behold you find you’re feeling better until you actually try on your jeans. Then you feel like utter crap. You won’t be able to wear them again until much later, so get shopping and you’ll feel even better. Everyone does. I promise.
But really the main reason you feel good is because you’re not in those early days anymore; you’re in a place where “new baby” is no longer settling in and sucking every last ounce of strength from you, because you have hereafter made an unspoken mutual agreement. This one says, “hey kid, I will love you and nurture you and cherish you and treasure you until both our dying days, so ease up already, hey?” And you already “get” him, because he is your son. Already your son. That love, too, is the same.
Precisely the same.
Then you go on vacation — that last one before he formally comes into life, because you know there will soon be a time when your adventurous his’n’hers explorations are no more, that you are now three-to-be and when you have a kid to look after, your time will never again be your own. And you will have to baby-proof everything. Right down to the rental car. Bungee jumping and hang gliding are to stay on the bucket list. Hell, you even feel a bit soggy on the Roger Rabbit ride in Disneyland. You’re pregnant. It’s the same.
But just before you left, it all changed.
They ran some tests. They found something that made you and your experience suddenly become “different.”
And they took it all away.
Until recently, this life, this progression, this expectation, well these things were all identical to every other pregnancy. The ones that become routine.
There came some tests.
There came some results.
Some things which made this pregnancy, your baby, no longer routine.
And they took something from you. They took your Joy and replaced it with Fear. Like a home invasion. Ripped from you like a gold chain from your neck. Broke into the safe and crept off with everything you had locked away and protected.
They took something you can never retrieve. They took it robotically, from behind spectacles made of What-if. Charts and graphs and measurements that said “femur x, nasal bone y.”
And from that point, that very minute, that phone call where she says, “Oh lots of people have that ‘risk’ figure, I’m sure there’s nothing to worry about.”
Are you really?
Care to join me in my bed til 3 a.m. from here to eternity?
And please tell me when did “son,” “child,” “baby” turn to “risk”?
Stole it. Snap.
Then everything you were feeling, wanting, hoping, expecting, is speared through with negativity. Perhaps not with their direct intent but as luck would have it, the science got in the way of the humanity, and then suddenly your baby, your child, your son, became a “problem,” a “risk.” Pregnancy, parenthood, joy, became faint memories. And you stopped taking bump selfies but only wanted it over. You wanted nothing more than to have your child and to get the hell away from the thieves of your happiness. You continued to value him despite what you were told. You grew fangs. Tiger mom was born long before your son joined her.
You were ripped from your plans so severely that the letter you began writing to your unborn son would never be completed. You put off all the home redecoration until the bitter end because you would never again believe there would even be a child, let alone a healthy child. There was “risk.” Surely there would be “disaster.”
The nursery would remain half-decorated and slightly cluttered until that child, that son, was here and was home and was yours. You could not rewind the time. You would never get that back. Like throwing a stone into an abyss, it wouldn’t even give you the satisfaction of echo.
(And that nursery would not be “right” until you moved home and your son had lived a full three years.)
But then he was born and he was amazing.
He has grown and thrived and been such a complete opposite to the predictions.
He has returned to you what they took — not because he had taken it back from them per se, but because they could not take what was in him and who he actually is.
Yes. Yes. Yes.
They never did know who he actually is. Perhaps that is the greatest tragedy of all. Perhaps more so that they never will.
(Here it is. Learn. Please.)
Four years later, these memories still burn. Like a stick jammed into a hornet’s nest. A magnifying glass on an ant hill. They scar and they fester and they do not go. Because they have taken a moment we cannot have back. They have stolen an experience we are never going to be able to re-live. Our first. Our only. Stolen.
Doctor, why did you take our joy and tar it with sorrow, based on “maybe”?
Doctor, why did you determine that a genetic difference completely negated the pleasure and the essence of our entire journey?
Doctor, why did you turn our expected new child from someone into something to fear?
Doctor, why did you ask whether we would rather risk losing him to an invasive test than to continue knowing he may be (in your opinion, not ours) “flawed”?
Different, yes. Flawed, not on your life.
Do you know, doctor, the damage you can cause with the weight of your words?
Do you know, doctor, that despite your budgetary constraints and your paper trails and your revolving door of “normal” pregnancies to look after, we remained human, we remained feeling, we remained in love with our unborn son?
Do you know, doctor, that your heavy words crushed a piece of our hearts?
Do you care?
It is said that with great power comes great responsibility. And there you had the greatest of power. In a place where we as prospective parents were feeling vulnerable and weak, nervous and excited all the same. Desperately lucky to have finally conceived a child after trying for so long. There you had a chance to find and present positivity in this strange new world we were facing.
But you blew it.
Doctor, you really screwed up.
You had an opportunity to help us rejoice in this new life. We were doing that already, but you took it away from us with your frown and your supposition. You stole it. You blew it.
You should have started by asking us how we were feeling.
You should have looked at us and seen the glow in our eyes.
You should have asked us what we would name him.
Rukai. Rukai. Rukai. He is 4 now.
He is mighty.
He is not Fear. He is not Problem. He is not Worry.
He is Rukai.
In the very same way as was for us, as long as you practice medicine you will meet other expectant parents for whom you can either be a guiding light or the memory of darkness. There is no second chance at welcoming new life.
With great power comes great responsibility. Own it. Earn it.
He is Rukai.
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Have you seen the first film with a national release to star a person with Down syndrome? Check out the film “Where Hope Grows” today!