The Unspoken Weight We Carry – A Reflection on Strength, Surrender, and Support
Thursday, 23rd January – The Uneasy Feeling
Some days begin just like any other—until they don’t.
That morning, I woke to find Ruby not quite herself. She was clammy, her breathing shallow and rapid. Yet, despite these signs, she was alert, present, and her ‘usual’ self. I had a commitment to support my eldest daughter at her beach volleyball competition—a two-hour drive away. I told myself Ruby was in loving, capable hands with her long-term support worker, so I pushed forward with my morning commitments and the drive to the Sunshine Coast.
But all day, my spidey senses told me otherwise. That deep, unshakable intuition that parents of medically vulnerable children know all too well—it whispered that this wasn’t something Ruby would just “get through” at home. It felt different.
At 10 PM, I made the call. Ruby needed to go to the hospital. Her support worker took her while I jumped in the car and started the journey back.
The Detour That Was Meant to Be
As I turned a corner, headlights illuminating the road ahead, a stray dog emerged from the darkness. He walked toward my car, pausing directly in front of my door. I slowed to a stop. I looked around, hoping to see someone searching for him—but no one came.
A lonely, exhausted dog, standing still, staring at me. Pleading.
So, what did I do? I opened my car door and let him in.
I called the nearest 24/7 vet, who agreed to take him. Little did I realize, this was 20 minutes in the opposite direction of the hospital. But in that moment, I had committed. He needed help, just as Ruby did.
I dropped him off, whispered a farewell, and continued my drive.
The Familiarity of the Hospital Halls
By the time I arrived at the hospital, it was well past midnight. Walking into emergency, I was immediately transported back to a time I knew all too well—one filled with uncertainty, exhaustion, and the relentless cycle of questions from doctors and nurses.
Ruby was in acute respiratory failure. Blood was drawn, oxygen administered, tests carried out. And then, we waited.
I found myself curled up in the corner, sleeping on the concrete floor, my head propped up on Ruby’s bag. The cold, sterile air of emergency wrapped around me, familiar yet unwelcome.
Yet this time, something was different.
I felt confident in the care Ruby was receiving. The doctors and nurses listened. They respected my insight as a mother, reaffirming that I know my daughter best. Alternative pharmaceutical supports weren’t dismissed. Her diet—real food—wasn’t frowned upon.
A Moment of Recognition
Once Ruby was moved to the ward, the exhaustion settled in, but so did a quiet sense of gratitude.
It was in this space that a nurse shared a conversation with Ruby’s support workers that she had with her colleagues:
"We were discussing Ruby out the back, and we all agreed—we can’t believe, given everything she has going on, that she hasn’t been in hospital more. It’s extraordinary. Her mum has done an incredible job caring for and advocating for her.”
That hit hard. Because that’s all I’ve ever tried to do.
I can’t cure Ruby. But I can make her life one to remember.
A Moment of Shared Understanding
During our stay, I found a moment to breathe in the quiet of the parent lounge.
That’s where I saw her.
A mother, alone, tears silently streaming down her face as she held the phone to her ear. The weight of exhaustion, of relentless caregiving, of never getting a moment to herself—it was written all over her.
I stepped out, heated some wipes, and then returned to her. I knelt beside her and gently placed my hand on her shoulder.
"What can I do to help?" I asked.
She wept, shaking her head. Then the words spilled out—her 3.5-year-old son with special needs, his constant need for her touch, her sleepless nights, her inability to even go to the toilet alone. She was drowning.
I had been her 13 years ago.
I assured her the nurses were with her son, encouraged her to take just five minutes outside, to breathe. I promised to inform the staff so she wouldn’t feel guilty stepping away. Then I wrote my name, number, and room on a napkin.
That night, I bumped into her again. And this time, she opened up. She shared her life—the work, the caregiving, the endless hospital stays, the exhaustion.
"How does one person carry all of this without breaking?" she asked.
The Question That Never Leaves Me
As I sat by Ruby’s side, I kept coming back to the same thought:
How do we do it all?
How do we balance ambition, dreams, the desire to live a full life, while also dedicating ourselves so wholly to a child who needs us in every moment? Is it selfish to want more?
Should I be home more? Should I give less to work?
But what if my work is part of the answer?
What if my mission—building a support system for parents like her, like me—is the thing that makes the impossible feel possible?
A Crusade for Support – And What’s Next?
I don’t have all the answers. Some days, I am the best version of myself for my work colleagues. Other days, I retreat and let my team step in.
I am learning to be okay with that.
Because this is why I built Ruby & Ollie’s.
And this is why The Inclusion Network has come to life.
To hold space for those navigating the same relentless journey. To remind parents you are not alone.
To be the napkin with a name and number, passed from one exhausted caregiver to another.
So, watch this space—because something amazing is coming. The future is brighter, and we’re just getting started. 💜
Rebecca.