My head was down, throbbing with sheer exhaustion.
My body tight with stress.
The room around me was cold and sterile.
Haphazardly placed posters covered the walls.
Next to me, sat my now ex partner.
The emotion between us both was thick and claustrophobic.
The only thing in my focus, was the hands of the physician.
“I’m not sure he’ll pull through,” he said. His vice was a rich baratone, but devoid of any feeling.
As he explained the procedure, his big, smooth, strong looking hands sat on his lap. His fingernails were trimmed short.
He encouraged both of us to say goodbye to our son.
Sonny and Jazmin were born six and a half weeks premature, following a gruelling two and a half day natural birth.
One twin, a tiny, soft, squishy ball of human flesh. Her skin soft, lips full and her almond shaped eyes were like clear blue puddles that saw deep into your soul. She had a button nose and sparse whispy curls that adorned her crown.
The other twin, born already holding a bigger, more masculine energy. He was much larger and louder. Broad shouldered and round eyed. His body was stiff due to high tone and his mouth wasn’t properly formed. His skin was a shade of grey you only see pre thunderstorm, and at times almost looked translucent.
Something wasn’t right.
Panic and fear snuck it’s way into the corners of my heart. I soon voiced my concerns to the hospital staff only to be shushed.
When the twins were six weeks old, things reached a critical juncture.
I could see my boy struggling. But any time I raised this issue with the doctors and nurses, my questions were left unanswered.
At the same time, an appointment had become available in Brisbane for Sonny. They want to transfer him up and have his cleft lip repaired.
When they told me, my adrenaline spiked.
“No,” I said firmly, “he’s unwell, his body won’t cope.”
The nurse argued with me.
“It’s a minor operation that happens every day,” she spat.
“If you don’t take it, it could be months, maybe years before you can get in again.”
I verbally stood my ground. Unfortunately my tough talk didn’t quite match my now crumbling interior. My heart was a mess. I could feel myself drowning deeper and deeper into depression. My anxious mind, wired with worry and grief. Tiredness was now a constant companion.
The hospital staff labeled me “difficult.” I felt it. I noticed the change in their body language. I heard the muttered comments. I saw the eye rolls. Even the children’s father sided with them.
My intuition was confirmed that following weekend. Almost like a proverbial middle finger to all those that doubted me.
Sonny had gone into cardiac arrest. He was dying. Emergency heart surgery was now his final hope of surviving.
I remember the constant beeping of machines. I remember tucking his bloated body into hospital blankets, making sure that “doggy” was snuggled next to him. I remember all the tubes and wires, oxygen prongs and drips. I remember the chill of the air con at night, as I dozed on the recliner chair. I remember the annoyance I felt when I got told that litres of my expressed breast milk had gone missing. I also remember the driving I did. The kilometres continued to tick over on the speedo, all the while getting me closer to my babies.
One was in the Intensive Care Unit in Brisbane. One was in the Special Care Unit on the Gold Coast. Then one rolley polley, cutie patootie toddler was at home with my then six year old step son and a paitent grandparent.
Oh, and the coffee. Everywhere I went I was offered a shiny, white polystyrene cup, filled with brown water mascarading as coffee. It was always luke warm and tasteless.
Jazmin beat her brother home by one month. So when Sonny was discharged, to have them reunited was blissful.
My life became whiteboards. They were everywhere and documented everything from feeds and changes, to sleep times and where we were on the medication merry go round.
Sonny was on ten different medications around the clock. He was then syringe fed my breast milk via a nasal gastric feeding tube, that he just would not leave alone. The adhesive on the tape irritated his skin to the point of it becoming raw and blotchy.
Well meaning friends and relatives only had to look at the white board to know who was due for what and when.
The children’s grandparents on both sides played a role in keeping things together, as it was intensely busy and far too much for one parent to manage on her own. By that stage, the children’s father had taken a job up north, “for the money.” He returned on weekends. I recall pleading with him. “Please…we need you here, we’ll find the money somehow!” It fell on deaf ears and soon the weekend trips home went from weekly to fortnightly.
I was in survival mode. Laundry piled up, the garden became overgrown and the floors remained dirty. My main goal was to keep the small humans alive, fed, medicated and happy.
My feelings of relief washed away after I discovered Sonny, grey, stiff and not breathing in his swing. Another emergency transfer back to the hospital.
That night, sitting next to the cot where my son slept, I cried. I cried tears like I never had before. And never again have I ever cried like it. A deep, broken hearted howl came from within me. A cry of pure exhaustion and of cold isolation.
The nurse on duty consoled me. “If your child’s going to die of cot death, there’s nothing we can do.”
She was bitter.
I was broken.
This year, Sonny and Jazmin turned 9. We celebrated in Airley Beach, with swims, a sushi lunch and ice cream that melted quicker than we could eat it.
They’re some of the healthiest and happiest kids I know.
Six months ago, my beautiful, dedicated, “Peter Pan” partner, Ryan, and I decided to sell everything we owned to travel. So now life is much less about medication, hospital visits, whiteboards, therapy sessions and bad coffee… and much more about natural healing, homeschool, big adventures, fostering independence, time in nature and the occasional latte in a keep cup.
The twins have ended up with an extensive list of diagnosis and a number of operations and procedures between them. But, it most certainly does not define who they are.
That season of motherhood, has undoubtedly been the hardest, but I wouldn’t change it. It’s woven us all with threads of resilience, strength and bravery, and shown me the depths of a mothers love. It’s like no other.
Moving forward, as a family we have now shelved “normal” and are now co-creating a creative life, that’s brimming with experiences and rich with adventure.
My hope is that one other mother, father or carer reads this, and it’s the glimmer of hope they needed to get through another day. Collapse into the space of trust. Breathe it. Embrace it and dance with it. Things will improve. I promise.
This beautiful, heartfelt piece was written by Kristy, who is currently travelling the country in a van with her partner and three children, homeschooling them on the go! You can find Kristy over at @little_platypus_learning on instagram to stay up to date with where life takes them next!