Jada, my baby, although only 3 minutes younger than her twin. My bonus baby, my curve ball, my perpetual source of medical angst and my most fiercely protected child on both a physical and emotional level.

I watched her struggle from the first moments after birth, silently aching with maternal need as she was taken to NICU instead of being with me.

I witnessed her sick, tired body momentarily lose the strength to fight for her life as she knocked on death’s door on her hospital bed, right before my eyes, realising in that moment absolute raw terror, and weeping uncontrollably when death turned her away, when her exhausted baby body proved to the room full of medical staff in the midst of her Code Blue that at 4.16kg, her desire to live was much greater than the complexities of her heart condition.

I wished a thousand times over that it could be me fighting the battle, instead of her, and I’ve lost count of the amount of times I’ve had to look away so she couldn’t see my helpless, heart broken tears as she cried at the discomfort and fear of the oxygen mask, pain of yet another blood test or cannula insertion, wishing for a ‘normal’ life for my innocent baby girl.

For every one of her three heart operations, I grew simultaneously stronger and weaker. Her bravery surpassed anything I’ve witnessed firsthand from another human. She was born into a physical struggle, and accepted her fight as inevitable. Being brave isn’t a lack of fear, but the courage to face up to it regardless.

Before every surgery, I would lose my delicate shreds of control as I signed the surgeons risk acknowledgement documents, wanting so much to grab Jada in my arms and run away from reality to shield her from the risks, the pain, and essentially from dying. I love her too much for that though, and each time I dripped my tears over my signature I knew that I loved her enough to give her the best fighting chance for that coveted ‘normal’ life that she deserved.

The pain of entrusting your child to a cardiac surgeon and his team is beyond my ability to describe. Kissing my baby Jada goodbye, leaving her side helpless, leaving her there without me, leaving her there without my protection was an emotional pain so immense it was physical. I felt gutted, like I was being depressed with a stronger than normal gravitational pull towards the ground, without any core strength to lift my shoulders or my head and only the muscle memory in my legs propelling me forward.

It seems contrary that Jada’s uncertain first few years were so full of despair, wretched but justified sadness with hurdle after hurdle medically, and so much fear could also bring such extremes of joy. The first time she laughed properly as a baby, less than a week after she nearly gave in to her exhaustion, was like a chorus of angels. Next to her twin, albeit in a hospital cot, but both my babies finally happy and well enough to smile up at me, in its sheer simplicity was to me a moment of miraculous beauty.

The phone call from her surgeon after her last operation, and that split second instinct to run away in case, just in case something had gone terribly wrong, just in case my baby had died, just in case she was never coming back and my life would have to go on without her in it. All in a split second, the fear nearly overwhelming me, but also in that split second finding the courage, as my brave little Jada is deserving of every bit of courage I can muster. In that short phone call, I was given the gift of Jada’s future, which had never been certain or even discussed at length. I’d lived with fear of losing her since before she was born, and considering life beyond a couple of years into the future felt like a cruel punishment given the gravity of cardiac complications she was born with.

I cried openly and unapologetically as the surgeon spoke. Raw and uncensored weeping from the depths of the darkened crevices within the soul of a mother who’d loved and held and kissed a child with an umpromised future. Tears relieving a four and a half year lead weight inside my heart and mind, voiced by the simplest but deepest feeling, that I was unable to articulate aloud in words.

Every day of her life so far had scared me. Any change in her health had the potential to turn horrific. I needed instead to stifle the fear as best I could, trying not to feed it to the point where I’d be overwhelmed. Sometimes it’d whisper, quietly reminding me. Sometimes it was loud, abrasive and arrogant. Sometimes it sobbed with the pain of sadness and despair.

I became encompassed in the anxiety, far from the person I was before. I was a mother of four, a wife, a daughter, a piano teacher, functional on the surface but seconds away from bursting into tears at any given time. I could talk about the facts of the situation to anyone genuinely interested, but people unaware that I was a fragile, anxious mess held together in public by a few desperate threads. A few closest to me acknowledged that I was consumed, but most were hesitant to genuinely discover the girth of the iceberg that lay beneath the surface. I don’t blame them. I was so immersed in our world of unrelenting worry that everyone else’s personal problems paled into insignificance.

Peter could mostly read my face when spoken words were difficult and unnecessary to communicate. I could never say it aloud, knowing if I held his gaze I was allowing him to see the desperate vulnerability of my crippling weakness. He knew I needed him to acknowledge my fear.

He understood the essence, my eyes saying what I couldn’t choke out in words – I am terrified that Jada will die.

It felt like a betrayal to Jada thinking that way, like I didn’t believe in her permanacy in my life. Guilt, sadness, despair, and terror. I didn’t see myself as pessimistic, but realistic.

Some kids with heart conditions die. It’s a fact I was told repeatedly by medical professionals and statistics, and it’s indiscriminate. Every child whose life ends prematurely from a CHD has a mother, a father and people who would trade everything they own for their child’s life. It’s not fair. I couldn’t guarantee Jada would live just because I ‘stayed hopeful’ or ‘was amazed at what the doctors can do’, or because old mates uncle’s neighbours cousin had a hole in the heart and you wouldn’t even know it. One surgeon informed me before Jada’s second surgery that the mortality rate for her particular operation was 10%. One child out of every 10 statistically had died during the same operation. 10% isn’t a huge percentage until it becomes a Russian Roulette with your child’s existence. I couldn’t bring myself to tell my husband. I think I wanted to shield him from the reality of the odds of the gamble. Maybe I couldn’t bear to see him as scared as I felt, and needed his strength to compensate for my weakness. Maybe saying it aloud would’ve made it all too real, preferring to avoid the frightening reality of her chances.

Jada is my most contented little girl, my teacher of resilience, and the one who allows me to appreciate my purpose in life. Jada is brave, even when she is fearful. She is happy, in spite of so much medical trauma. She’s chilled out and easy going, as if she’s never suffered a day in her life. She is very smart, like her big sisters, and loves books, imaginary play, toy babies and colouring things in beautifully. She loves affection, basking in cuddles and kisses and me stroking her soft pink skin. Jada loves her twin Josinta, her partner in crime and in-built bestie. They have a bond unique to the relationship of twins, oblivious to the notion that anything would ever prevent them being together. 

Jada makes me feel incredibly lucky. She has the health now to enjoy being a normal kid, not being a constant sickly shade of blue from lack of oxygen. She has the opportunity to run, to play, to sing a Frozen song without being breathless. To fall off a bike, scrape her knee, get some bruises like every normal kid, grateful that she finally had the strength in her muscles to ride a bike, to cry without her oxygen levels plummeting, and the energy to get back up.


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