THE RAW RUTHLESS REALITY OF SPECIAL NEEDS PARENTING (an excerpt from my memoir)

I stuck my head into the fridge to search for the watermelon I’d cut up that morning. Mackenzie was propped up in her high chair alert and happy when I opened the fridge door. I closed the door and saw her slumped forward with her chin resting on her chest. My eyebrows scrunched up into the centre of my forehead at the sight of her face now a ghostly white. Delicate soft pink circles formed on her chubby cheeks and droplets of sweat bubbled between her brows. Her eyes were closed and her usually active limbs hung limp beside the red seat.

“Kenzie”, I ushered, placing my index finger under her chin and lifting her head up to examine her face. “Are you asleep honey?” I calmly asked, suppressing an unbearable heat brewing inside me when her head flopped back down, unresponsive. I wiped the sweat off her face and placed the back of my hand on her forehead to feel heat radiating from her clammy skin. I gently lifted her out of the seat and kept calling her name. She didn’t respond. Her head flopped back as I lay her in my arms and a constriction clenched the inside of my stomach in response to my failed attempts to rouse her.

A thousand thoughts ran through my mind. What should I do? Where should I go? What does she need? Why is she so clammy? What’s wrong with her? Fuck. I stood in the kitchen for a moment before I decided to run across the road with her lifeless body in my arms and called out to my neighbour.

“Uncle Bruce!” I yelled out as I ran up the driveway. “Something’s wrong with Mackenzie!” He heard him run down the hallway to the door, panic now surging through my heart. He flew the door open and stood at the top of the staircase. The colour drained from his face. “Can you drive us to the hospital? We’ll take my car so I can watch her in the back seat”.

“Why don’t you call an ambulance?” he suggested.

“They’ll be too long we can get there faster if we drive”. I ran back home and frantically stuffed her nappy bag with as much as I could collect with one arm and a frantic mind. I looked at the clock to record the time and grabbed her medications from the fridge. I strapped her into the car seat and sat next to her willing her to wake up as Uncle Bruce sped us to the hospital. We drove in silence as I watched her tiny chest rise and fall, short puffs of air drawing little oxygen in and out. By the time we left home she’d been unconscious for ten minutes.

“Kenzie, wake up honey. Kenzie”. She moaned occasionally but her body was limp in the car seat and her face wet with sweat. I propped her head up with my hand and gently stroked her forehead, removing the sweat seeping out of her skin.

“I’ll wait here for you” Uncle Bruce said as he pulled up out the front of the emergency department. I unclipped the buckle and pulled her into my arms before he’d stopped the car. The automatic doors flung open to expose an empty waiting room and a sigh of relief exhaled and softened every cell in my body as a sea of empty chairs greeted me. The triage nurse saw Mackenzie lying limp in my arms and pressed a large green button on the wall that said ‘OPEN’ on it. The doors flung open as I ran around the corner and she picked up the phone when I sat in the chair next to her.

“What’s your name?” she asked, placing the phone between her ear and shoulder and peering into Mackenzie’s sightless eyes with a torch.

“She’s blind. Her pupils won’t respond to light. Which paediatrician is on today?”

“It’s Kimmy”, she advised, immediately aware I must be familiar with the hospital staff.

“Call her and get the team here now. I don’t know what’s wrong with but she’s at risk of adrenal crisis. She has panhypopituatarism”.

“Code red code red in emergency department”, she called into the phone.

Mackenzie’s breathing become shallower. Short sharp breaths puffed her chest and I encased her warm body as close to mine as possible. “Keep breathing baby girl. Please keep breathing,” I whispered into her ear. I watched her expressionless face and unresponsive body soften into my arms with every little breath she took. The nurse asked for details about Mackenzie’s condition and I heard Kim come running through doors. I looked at her from my chair and she stopped as she caught my eyes.

“Oh shit,” she whispered, “how long has she been out for?” She directed me to an emergency bed as three other nurses came running around the corner.

I checked the clock on the wall. “About 35 minutes now”, I answered.

One of the nurses closed the curtain behind me as another stole Mackenzie out of my arms and lay her on the large single bed on wheels. I got pushed up against the washbasin when another nurse rushed into the room behind me. My ears filled with the sound of medical equipment and multiple conversations between the staff pushing around me to access the bed.

“You’ve got to move back Tanya we need some room here” Kim waved me back to the edges of the tiny emergency room until I was standing as far away from the bed as possible. She wasn’t moaning any more and the rosy pink cheeks were burning red against her pale white skin. Kim directed the other nurses and one stood beside me, placing her arm on my shoulder.  Kim’s words were buried in the scurry of the motion and one nurse placed a gas mask over her face to pump oxygen into her lungs. It covered her entire face.

“Shit! These bloody veins,” Kim mumbled, wiggling a needle into Kenz’s elbow as she tried to puncture a vein. They could never find her veins. It was always a tiresome experience trying to bleed Mackenzie because her veins were deep and small. Numbing cream only made it more difficult so the quarterly blood reviews were traumatic for everyone. We had to do blood tests with four adults pinning her down to get a cannula into her arm, her fear spewing adrenaline through her body and giving her a strength we struggled to contain. At least this time, in the flurry of movement and desperate attempts to get a cannula in her arm, she lay so still as Kim poked and prodded her elbow.

“Found it”, she sighed. “Where’s the glucose?” she outstretched her arm and waited for it to appear in the palm of her hand. She attached the large vile of sugar to the inserted cannula and fed the liquid into Mackenzie’s vein. One of the nurses monitored her observations as the oximeter struggled to take a consistent reading. In the rush of activity I hadn’t noticed my baby was now attached to several life lines. Suddenly, the room stopped moving. We waited, chests puffed as we held our breath to see if the medication would infuse life back into her lifeless body.

“Mackenzie”, Kim spoke softly as she wrapped tape around the cannula sight to secure it in place. “Mackenzie wake up darling girl, it’s Kimmy”.

Nothing.

I slid down the wall behind me and sat underneath the wash basin with my eyes fixed on her motionless body. I didn’t dare take a breath. The nurse standing beside me sat on the floor next to me and placed her arm around me. I moved away from her embrace, unable to receive her in that moment. Her embrace was unfamiliar during such a traumatic and isolating experience. I’d become so conditioned to standing in that space alone that her love was unfamiliar and I felt ashamed for pulling away from her caring intention.

“Kenzie” Kimmy softly repeated. Three nurses stood by the bed watching over her like guardian angels waiting for the moment we could breathe again. Waiting for her to wake up.

Her left thumb wiggled and we heard a tiny groan.

“She’s coming back” Kimmy softly sighed as Mackenzie tried to push the oxygen mask off her face. “Mum, come over here she’s coming back”.

I walked up to the bed and saw her tiny feet slowly moving on the crisp white sheets. There was a pool of blood under her arm from the attempts to insert the cannula and the multiple lines attached to her reminded me of those first few weeks in hospital when she was diagnosed. Her head rolled from side to side and she let out a whimper. She screwed up her face and grimaced as she tried to lift her arm off the bed. I touched her forehead and whispered her name.

“You’re ok baby. Rest now, you’re ok”. I crawled onto the bed and curled up into a ball beside her and cocooned her little body in the safety of my arms. “It’s time to wake up baby”, I gently willed her to rise from the unintentional slumber. She’d been unconscious for 45 minutes. Kim stepped away from the bed and rested her back against the cupboards behind her. I heard her release a sigh as she moved away and looked down at us nestled on the bed together.

“Thank you”, I mouthed to her, unable to muster enough projection under the quiver in my throat. She nodded without saying a word before she let her gaze fall to the floor.

“You did great team. You did great” she assured them as she opened the curtain. “Lets give mum some time. We’ll be close by to monitor you. Call out if anything changes”. They all stepped out of the emergency room and closed the curtain behind them.

“Baa baa”, Kenzie said as the curtain was drawn. The nurses laughed as they closed us in the safety of those four walls, surrounded by life saving medical equipment. Medical equipment that had just saved her life. The blood stained sheets and respiratory mask a reminder of the reality we’d just survived. I lay my head next to hers and sang ‘Baa Baa Black Sheep’ at her request, tears sweeping down my cheeks, as she slowly came back to me.

Tanya Savva