’m37,pregnantandpetrified.MyhusbandandI have
alreadyhadonemiscarriageanddon’twanttochance
another.Butmyhormonelevelshavespikedandmy
doctorstronglyrecommendsamniocentesis.Although
it’smeanttobea safeproceduretodetectgeneticor
chromosomaldefects,amniocarriesbetweenone-in-200
andone-in-400oddsofcausingmiscarriage.It’sa
less-than-one-percentrisk,buttomeit feelsalltoolikely.
Sixweeksearlier,whenI sawandheardourchild’s
heartbeatinthatfirstultrasound,everything
changedforme.Eachlittlerapid,flutteringthump
mademefeelhazyandlight-headed.Mysenses
filledwithanall-consuming,hearth-likeglow.The
doctorprintedoutbaby’sfirstphoto.I squeezedmy
husband’shandsotightlyI thoughtwemightfuse.
AlthoughI unwaveringlysupportwomen’srights
tomaketheirownreproductivedecisions,I knew,
irrevocably,minewouldbetokeepanyheartbeating
untilmyownstopped.Aswewrestlewiththeamnio
decision,WarrenandI havethetalkthatcountless
parentshave.“Ifsomethingis‘wrong,’whatwillwe
do?”I’dhadmymomentandknewwhatI woulddo.
Butdidhe?Withnohesitation,Warrensays,“Ourchild
isourchild.”I stillrememberthelookweshared.
Wedoamnio.Everythingisfine.
Xavierisbornandproclaimedhealthy,buta dayafter,
heishavingseizuresandisrushedtoNICU.Ina flash,
ourlivesgofromimagineddiaperafterdiaper,bottle
afterbottle,napafternap,tounimaginabletestafter
test,medicationaftermedication,hospitalisation
afterhospitalisation.Aftertwomonths,Xaviercomes
hometostay with a strong, beating heart. And epilepsy.
And cerebral palsy.
As he grows and the severity of his challenges manifest,
we are often told by doctors, therapists, friends, even
strangers, what great parents we are. How brave we
are. I don’t see it. Since when is loving your child and
doing your best by him “brave”? If anyone had courage,
it was Xavier—still not able to hold his head up, hold a
toy, hold me. Taking medication twice a day that no one
under two was ever meant to take. But they make 60
seizures a day dwindle to two, then none. Xavier is alive,
fighting, growing and smiling. He is my hero in every way.
Even though his care is overwhelming, after a year
of feeding, sleep and gastrointestinal issues on
top of doctor’s visits and therapies, I do find what
I feel is “courage.” The courage to have a second
baby. Although we’d long agreed to having two kids,
Warren didn’t realise how the scope of Xavier’s
needs made me waver. He hadn’t for a moment.
When I get pregnant again, Warren is working, so I go to
the first ultrasound alone. The doctor does not print out a
photo. Instead she refers me for a 3D ultrasound and CVS
(chorionic villus sampling—the earlier, riskier version of
amnio). She hopes what she sees turns out to be nothing
on the more-accurate 3D, and wants our first photo to
be a “happy” photo. We go and are met with all manner
of paperwork: genetic arrays, state reporting, liability
waivers. After almost two years with Xavier, we are pros
at “distill your worst days and sign away your rights here,
please” forms. Oddly, the odds don’t scare me anymore,
as I’d learned first-hand I could beat odds one day then
be blindsided the next. I just need to know what’s up
with baby number two so I can decide what to do.
That’s when I get honest and acknowledge that
the reality of raising a special needs child has
pummelled my irrevocable “keep any heart
beating” bravado to dust. The woman I did not think
I was—one who could terminate a pregnancy—
rises within and makes herself known.
Now, I understand courage in a new way. It’s not just
rushing into a burning building or taking a bullet. It’s also
being able to admit one’s limits. I could face potential
censure from family, society, my husband and definitely
myself. I thought of friends who once faced similar
circumstances. Not until my own Sophie’s Choice
moment did I fully grasp the courage it took for them
to choose not to have a child with catastrophic health
issues. To possibly live a lifetime filled with guilt and
regret, but to understand that’s better than being a
martyr to idealised notions of right and wrong. Courage,
I learned, does not guarantee positive outcomes, or end
pain, anger or fear. But it does allow you to face difficult
truths. Change your mind. Accept yourself where you are.
My unborn daughter, the tests showed, was fine. I was
eternally grateful to be spared that decision, or to ever
have to tell anyone about it. But today I see that courage
can also be sharing a truth you don’t have to or want
to share, but do anyway because it might help another
discover their own. And it might make you come to terms
with yours. Courage, in time, can be a portal to grace.
I
STORIES OF COURAGE 57
