The guide I wish I had for my unexpected journey

30 January 2024

My journey into parenthood took a sharp turn I never saw coming. The vision I held for myself as a parent – carefree days, structured routines, and predictable milestones – changed dramatically as my child’s development unfolded in unexpected ways.

I Found Myself On a Path I’d Never Imagined

Suddenly, the rulebook I assumed would exist for raising a child vanished. Instead, I faced a vast, unwritten space filled with uncertainty and conflicting emotions. I was thrown knee-deep into a world that I knew very little about. My days were consumed by appointments, travelling all over Sydney to find the best possible interventions, late-night researching, googling at 3 a.m., and mostly guilt- guilt that I wasn’t doing enough for my son Dax and neglecting my daughter Dylan.

Should I be prioritising another therapy session or squeezing in precious family time? How could I balance Dax’s needs with the well-being of our entire family, myself included?

It was overwhelming; I felt lost and unsure of where to turn.

Finding Our Way

Fast forward to today and I’m relieved to say the picture looks very different.

I finally feel like we’ve arrived at a place of balance. Our family is thriving, my son Dax included. Today, I work for a family-led organisation delivering programs that build the capacity of families and support them to navigate the unexpected journey of raising a child with disability, delay or neurodivergence.

One of those programs is ENVISAGE Families. And it is the program I wish I had in those early days. It isn’t a rulebook but a supportive map for navigating this uncharted territory. ENVISAGE introduces frameworks, not rigid instructions. These frameworks, informed by research and experience, became guideposts in the fog. It doesn’t dictate but empowers you to make informed decisions, prioritising your child’s well-being and your family’s happiness.

A Tool To Chart Your Own Course

The program’s strength is bridging the gap between your head and heart. When faced with scheduling another therapy session or cherishing family time, ENVISAGE empowers you to listen to your intuition and lead your life based on your family values. It validates the importance of everyday experiences and will show you that the most powerful therapy sometimes happens at the dinner table, in the park, or snuggled up on the couch.

I can only imagine how different our path would have been had I known this information sooner. And while I wouldn’t change a thing about my son or our beautiful family, I wish I hadn’t spent those early days feeling adrift, yearning for a map that didn’t exist and living a life consumed by therapy and appointments.

ENVISAGE will show you that the best guidebook often lives within yourself, and sometimes, all we need is a trusted framework to light the way.

…and beyond the frameworks, one of the program’s greatest gifts is connecting you with other families walking a similar path. This connection and support are hidden gems that truly change the game when you discover them. It’s like finding a secret door that leads to a whole new level of understanding and comfort, proving that even in the most unexpected journeys, we are never truly alone.

So, if you find yourself on this unexpected path, I encourage you to explore ENVISAGE, and find support and guidance through the challenges and the triumphs. Because ultimately, the journey of raising a child with disability or developmental concerns, while challenging, is also one of the most rewarding experiences life can offer.

Bree Pennie

Bree is a mum of two; her second child, Dax, was born with Congenital Cytomegalovirus (CMV). Bree is the Program Lead at Kindred, a family-led peer support organisation for families raising children with disability, delay and neurodivergence. And is a Parent Facilitator for the ENVISAGE Families Program.