Bearing Witness; One Mother to An-Other.
Article Type: Literary essay
Subject: Motherhood (Portrayals)
Motherhood (Personal narratives)
Delivery (Childbirth) (Portrayals)
Delivery (Childbirth) (Personal narratives)
Down syndrome (Portrayals)
Down syndrome (Personal narratives)
Mentally disabled children (Portrayals)
Mentally disabled children (Personal narratives)
Author: Place, Fiona
Pub Date: 05/01/2011
Publication: Name: Hecate Publisher: Hecate Press Audience: Academic Format: Magazine/Journal Subject: Women's issues/gender studies Copyright: COPYRIGHT 2011 Hecate Press ISSN: 0311-4198
Issue: Date: May, 2011 Source Volume: 37 Source Issue: 1
Geographic: Geographic Scope: Australia Geographic Code: 8AUST Australia
Accession Number: 268220714
Full Text: One moment.

She was an ordinary mother.

An ordinary mother on all fours giving birth.

The next.

A woman who had failed profoundly.

A woman who had relinquished all 'duty of care'.

A stillness no mother would find manageable.

Decent.

Hadn't thrust wide open her birth canal. Hadn't caused her to fear she would tear, split wide open.

Yet while she knew something was wrong, knew instinctively, at another level she didn't have a clue. And told herself his softness, his lack of robustness could simply be a second-birth thing. Or something that in retrospect would be an irrelevance. And easily explained away.

The blood on her legs, the blood on the floor--the blood of a job well done.

She'd given birth.

She was no longer pregnant.

She had become a mother.

Slowly and in silence she made her way back towards her bed. But all the while an apprehension made her want, not want, to make eye contact with her son.

When she did look, did search into his eyes for a recognition she could cherish and recollect, she was overcome, overwhelmed by a desire to make 'small talk'--to talk the 'talk' parents usually do when they gaze at their newborn for the first time.

In a voice that wanted to feel excitement, to expand and fill the room, she found herself asking her husband Andrew, if he too didn't think their son had 'downsey' little eyes.

She wanted Andrew to say yes, that just like Imogen, the nine-year-old daughter of close friends Margot and Bertrand, their son had exquisite, beautiful almond-shaped eyes.

Wanted her 'observation' to be swept up, made ordinary and part of the everyday.

Wanted the man she had chosen to have children with, to chat.

To reassure her.

Restore confidence.

And circle them with love.

She wanted him to dismiss her pediatric student nurse musings, to refute the 'medical' knowledge now threatening to choke off any happiness.

Or pride.

She didn't realize he too might be wondering.

In her post-birth effervescence she couldn't appreciate, couldn't imagine that Andrew, too, might be thinking their son's eyes were too almond-shaped, his head too small and his ears too low-set. He too, in pain, experiencing distress. An inescapable apprehension. Dread.

And want to protect her. Protect them.

To wait for a moment of privacy.

Intimacy.

Privacy, however, was not on the agenda and minutes after giving birth she was asked to hand over her newborn. To allow the registrar to examine him.

There were, after all, legitimate concerns.

A red too intense to not signify something.

From her bed she watched the registrar examine his body, each moment of observation stabbing her heart.

Yet if the truth be known, she too had looked, she too had noted the 'signs' the 'stigma'.

He doesn't have the telltale simian-crease; she'd wanted to shout out.

Let loose with pride.

There was, in other words, plenty of room inside her head for doubt, for her to continue harbouring any number of reasons for his "floppiness'.

His difference.

Then:

'Did you have an amniocentesis, Catherine?'

The question hit.

Did you have an amniocentesis?

Hit hard.

And at the same time didn't hit at all.

Though there were no smiles. No warm words of congratulations.

No welcoming rush of wonder towards her newborn.

Towards the baby she and Andrew had made, wanted.

Instead of bathing in the precious awe of a new life, she found herself up against a considerable headwind. Without warning, icecold gusts slapped hard against her still exposed post-birth body, slapped mercilessly against her cheeks, her breasts.

'Do you have private health insurance, Catherine?'

She was to be managed, processed and moved out of the delivery suite as quickly as possible.

She wasn't special.

There was nothing to applaud.

The midwife wanted facts.

Facts about her.

'Then we'll put you in your own room.'

She knew being allocated her own room signaled 'bad' news, but still allowed herself to feel special, to feel encouraged by the idea of her own ensuite, her own space.

She knew the question about her insurance status had been asked because it was presumed she might be 'upset', might be 'depressed', might even be 'angry' if she were to room in with other mothers--with women whose babies had been deemed to be 'normal'.

That it had been decided she might need space to cry.

To vent. Express anger.

And r-a-g-e.

They did, however, in the privacy of their own room, while holding their son, while adjusting to the circumstances in which they found themselves, wonder if his redness, his noted 'probable polycythemia'--a condition in which there are too many red cells--might explain his 'floppiness'. Did wonder if his 'difference' could be explained by an exposure to a virus during pregnancy, did wonder if he really was as different as everyone thought he was. Did latch on to these unlikely explanations as a way of easing themselves forward. Wanted to protect their son from the swift and brutal labelling, the 'biology as destiny' attitude of the medical and nursing staff.

We also knew.

She still remembers looking into Andrew's eyes and his beginning to say, 'yes, they do think he has Down syndrome, do think he has what you said', when they interrupted by a knock at the door.

It was the pediatric consultant, Dr J--the same pediatric consultant who had looked after their first-born.

Dr J was visibly shocked.

Visibly uncomfortable. Rather than engage in any great to see you again chat, any congratulatory chat, any doctor to doctor chat, got straight down to business, straight down to facts. You're both professionals, both intelligent people, you know what we're thinking.

They could 'see' the tragedy, witness the disaster, Dr J's eyes betraying an inability to fathom, to comprehend how two tertiary-educated people, two people not that different to himself could have allowed this to happen. Could have got themselves into this situation.

True, it was not what Catherine and Andrew had planned, not what they had 'wanted'. But even then, under the spotlight, the inescapable scrutiny from their 'peers', they were united, solidly there. Solidly behind their son.

Their immediate task was to make Dr J comfortable, to put him at ease with their supposedly tragic 'birth outcome'--simultaneously managing their own need for time and space.

They needed a 'wild card', needed the possibility of some other path, some other journey than that mapped out by a chromosomal study. Needed to push back the medicalization of their son, the categorizing and classifying of his physical form. To maintain a wide and open space.

A space with possibilities.

The other issue, the more pressing issue Dr J told them, is your son's polycythemia. And shifting his attention, his gaze towards Andrew, he explained how their son's hyperviscosity was putting his central nervous, cardiopulmonary, gastrointestinal and renal systems at risk. 'His heart rate's falling and he isn't regulating his temperature. I think we should act.'

Andrew nodded.

I nodded.

'You can have twenty-four hour access, but I need to take him with me now.'

'Give me half an hour to get him admitted', Dr J informed them as he wheeled their son out the door, 'then you can come down whenever you want.'

Left alone with so many uncertainties swirling the room, Andrew and Catherine focused on what they could do.

On what they hadn't as yet thought about.

A name for their new son.

Spencer, Cameron and Declan all came to mind, floated around the room. As did Jackson, Cooper and Max, but the name that kept returning to their lips, kept returning to their attempt to forge some tranquility, some sense of order was Saxon.

S-a-x-o-n.

It was, they agreed, an uncommon name, but on saying it out loud to one another, on trying it on for size it was, they decided, a strong name.

A name that could take their son anywhere.

Time.

She needed time.

They needed time.

Time to adjust. To get their bearings. She doesn't remember much of that first half-hour without her son only that, the moment their half-hour was up, they made their way down to the Newborn Care Centre.

And gently stroking their son's cheek, gently kissing his forehead, whispered his name, Saxon, and told him they loved him.

Over and over.

However he was not feeding enough, not waking enough and, the next day, Dr J advised they consent to a partial plasma exchange transfusion.

They tried to assess the risks, to take in the information, to get their heads around the issues.

The procedure was controversial--not all studies suggested the benefits outweighed the risks.

Should we or shouldn't we?

In the end they decided to trust Dr J.

To accept the advice on offer.

And Saxon came through with flying colours, after a few hours more alert, more hungry, more him.

Out of danger, feeding and maintaining his body temperature he was discharged from the NCC and allowed to join her in her room where she looked after him in the same way she had her first-born.

Breastfed him, bathed him and slept when he slept.

Andrew visited as often as he could, bringing Angus their twenty-three month old. Angus seemed to like the idea of having a brother, but was more intent on controlling the remote, on watching cartoon after cartoon than displaying any curiosity, any desire to examine his baby brother.

She too, had planned on watching television, had planned her second-born would be a snack-a-roo. And while Saxon did sleep, was this in some ways, in other aspects caring for him was far more complicated than 'usual'. His low-muscle tone and large tongue made it harder for him to latch-on, to suck, so feeding times were by necessity more frequent and far lengthier than they had ever been for Angus.

She wanted to luxuriate, to enjoy the short period free of domestic chores and focus on her son; focus on what was going well, on how he was like any other baby. But the staff had other concerns.

The medical staff worried.

Why hadn't this mother cried?

Didn't she get 'it'?

She found herself the recepient of many 'lectures'.

'Information sessions.'

Staff intent on making sure she wasn't under any illusions. Any misapprehensions. Pulling up a chair close they would confide, would let her know: your son may walk, may talk but he will never cook, drive, understand danger or live independently.

Never, never, ever ...

The list varied staff member to staff member, but the message was always the same.

Her son would need 'care', would need 'looking after' for the rest of her life.

Her marriage, her family would never be the same.

Never.

Andrew told her to ignore the never talk, to ignore the social worker and let everyone's negativity run off her like water off a duck's back.

But she couldn't.

She didn't want to hear the word never or its corollaries special needs, disability support services or respite services one more time.

She wanted to be left alone, to shape her own experience, her own understanding of her son. To pull away the labels, the strange mixture of pity and condemnation and feel the warmth of his body against hers; to love him without thinking, without questioning.

Day four, Wednesday 20 February 1996 she took aim.

Having fed and settled Saxon she showered and made herself presentable. She waited for Saxon to fall asleep and then, armed with a touch of fire-red lipstick, made her way round to the nurses' station.

She had had enough of being exhorted to cry. To release her anger. To scream.

Reasonable as she was however, she could still see the nursing unit manager hesitate, wonder if she should grant her request.

So she smiled. And reassured her she would be fine.

That Andrew and she were resourceful people, educated people and if they needed to make contact with a social worker in the future, they would.

'If', the nursing unit manager replied, 'you are really sure about this, I'll make a note in your file.'

I'm sure, I told her.

If, as she and Andrew said to one another in the privacy of their own room, if as we said to one another during our late night phone-calls, if we ever feel the need to be weighed down by such negativity. A negativity that seemed to know no bounds.

No limits.

The problem was they didn't feel weighed down by what the staff thought they should be weighed down by.

The never talk was the staff's, not theirs.

The anger at a 'flawed birth outcome' the staff's.

They weren't looking for someone to blame.

They felt sad.

Sad for Saxon.

Sad.

But they also trusted their instincts.

And were determined not to believe all they had been told.

i. we kept open alternative explanations--occasionally telling one another the viral tests will prove them wrong

ii. we left the hospital without the red resource folder on Down syndrome, choosing instead to wait for the results of the chromosomal studies to come back before adding the words disabled child to our vocabulary

iii. we lay close to one another at night and talked, spoke of our belief in the sheer force of mothering/fathering and the capacity of love

Yes, in their hearts they knew the viral tests were a waste of time, in their hearts they knew what the chromosomal studies would show, but they want/needed time.

Want/needed to come to their own understanding of their son.

Of Saxon.

Fourteen years on, the shock, the heartache and the deep sense of sadness have lifted.

More than lifted.

She loves Saxon.

Deems it an honour to have been chosen to be 'his' mother.

An honour to guide him towards adulthood.

There have, however, been days when she lost all hope of being an ordinary mother.

Days when being confined to the perimeters of home while trying to be a good enough mother to three boys was unduly difficult.

Unduly friendless.

Days when the longing to be a mother who wasn't that much different to another mother threatened to extinguish any sense of joy.

Of pride.

Days that were difficult beyond belief.

Days where she did feel crushingly alone.

Or put another way, should she have done what was expected of her? Should she have had the amniocentesis?

My answer is no.

No, no and no.

But holding onto this no, feeling pride in her role as a mother, feeling valued and useful as a member of society has not come easily. Rather she has had to nurture the no, protect the no and, most importantly, understand it.

Only minutes old her newborn, Saxon was found wanting.

Judged 'less' than acceptable.

And in accordance with the medical opinion of the time she was charged and found guilty on the following counts:

i. behaving irresponsibly during pregnancy

ii. carelessly giving birth to a newborn whose life was bound to be one of ill-health and suffering

iii. willingly and wantonly burdening herself and society--causing economic social and emotional hardship

To this day her 'crime' has not changed.

I still stand charged.

What has changed though is that, fourteen years on, she can reflect on the context of her alleged crime.

Can identify the cultural chill.

The ice storm.

Understand how it is she is seen as having 'failed'.

Seen as having failed to accept the paradigms of 'successful' motherhood.

'Choice.'

'Liberation.'

She understands how her assumed rejection of these values, of modernity, progress and equality make her unfit, unsuitable as a role model to younger women.

With the next generation of mothers.

With those who will/may follow.
On Saturday, February 17, 1996 at 2.45pm I gave birth to a boy.
A live
    crying newborn. A son with almost perfect Apgar scores. But instead
of
   elation and joy, instead of sparkling sentiments and congratulatory
words
   spilling into every nook and cranny of the room, the delivery space
   collapsed into an uneasy stillness, into pained whispers of palpable
   disquiet.


I knew something was amiss. Knew all was not as it should be.
      In the last few minutes of pain, pushing and panting my emerging
   baby hadn't shoved, hadn't pushed up hard against me.


I stopped inhaling the gas and collapsed down onto the floor.
      I was free.


My instincts however told me the journey into motherhood might
not be
    straightforward. That already, it may have veered off course. And
without
   speaking, without wanting to e-n-t-e-r the moment of motherhood I
stood
   upright and steadied myself against my husband.


Isn't he beautiful? Doesn't he have your mouth? My
ears? And
    your nose?


I wanted him to say yes
      but no
     to agree with me,
     but say my 'observation" meant nothing


I wanted him to employ his own medical expertise, to call upon
his
    own title of Doctor, his own Bachelor of Medicine and shelter our
son
   from the unease. Shelter him from the disquiet circling his tiny
body, a
   quiet that was beginning to suffocate warmth or joy.


Oily son was red,
      beetroot red


As a twenty-three year old student nurse I had been taught to
see--to
    notice signs of abnormality in the newborn--one of those signs was
the
   simian-crease. So named because the appearance of a single crease on
a
   newborn was unusual and resembled that found in higher primates,
   in non-human simians.


I still remember the enormity. The deafeningly loud female
voice as it
    broke the silence.


Still woozy from the effects of the nitrous oxide, still
wanting to
    experience the elation of having given birth to a second son, I
couldn't
   take in the portent, the significance of the midwife's request
for
   information.


'Yes', I replied
   wanting to be polite,
   helpful


I was upset.
      We were upset.
     But we didn't fall apart.
     Didn't cry. Didn't feel the need to blame.


our birth outcome
      was a "tragedy'
     a "disaster'


To my relief Andrew suggested Dr J do a viral screen, that he
rule
    out the possibility our son had been exposed to anything
'nasty' during
   pregnancy. Dr J looked doubtful, but in deference to our
"friendship' and
   Andrew's status as "doctor', he agreed.


He wrapped my son in his bunny rug and gently laid him in his
perspex
    home.


I sat with Saxon, sat as close as I could, as often as I could
and
    admired his calmness. For no matter how much they poked or prodded,
his
   grace under pressure was remarkable. His ability to settle himself,
   compose himself.


I wasn't behaving as I ought.
      Wasn't in tears, fretting and desperate for answers.


I had
      had enough


I am not sure what I said--but I do know it would have been
    restrained, that I wouldn't have lost it. Wouldn't have
'demanded'
   that damn social worker be banned from my room.


we didn't feel angry
   we never have


sad for us
   our family


of the life warmly
      nestled
     between us
     Today.


I am incapable of imagining a life
      without Saxon
     of imagining my life could be 'better'


I would be lying if I said I'd never felt so devoid of
hope, so
    overwhelmed by the job of 'caring' that I haven't
asked myself the
   hard question, the unpalatable question. Had I known Saxon was to
   be born with a chromosomal disorder, would I have terminated the
   pregnancy?


The painful and awareness I would need to understand the no,
    justify the no to all and sundry, only seconds after my son took
   his first breath. And let out a cry--vigorous and full of life.
     Her crime.


yet I believe it is important
   I speak
   discuss my alleged 'crime'
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