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The doctor’s words slammed into me with force. “Your son has significant brain damage. Left untreated, he will die a slow and painful death.”

All of us have moments. That was one of mine. A watershed moment where life hangs precariously in the balance, and you wonder what tomorrow will hold – or if there will even be a tomorrow.  

My baby was only nine months old when we received his latest diagnosis of Infantile Spasms, a form of childhood epilepsy. He had already gone through open heart surgery, multiple hospital admissions, NG feeds, oxygen on occasion along with his primary background diagnosis of Downs Syndrome (among others).

I couldn’t comprehend in advance how heart breaking this next part of our journey would be.

But I also had no way of knowing then that survival was possible. For all of us. That we could somehow pull through as a family, despite the odds, and come out the other side. Yes, we have made more sacrifices and concessions than you would care to count.

But today I stare at a little two year old boy who signifies conquering battles with a smile on his face and a resilience that takes my breath away.

I have learnt a lot through our journey of raising a child with complex medical needs. I am still learning how to parent a healthy, older sibling who is brought up with a strong self-esteem as he grows and develops alongside a younger brother with special needs.

What I have learnt is about survival in the toughest places. I’ve learnt how you keep yourself going when you feel like screaming and never stopping. When you feel like crying and never ending, but you have no time to even begin.

I’ve watched as our second son has reached for life with both hands and surpassed expectations. He was walking at eighteen months, saying “Mummy” at 16 months and his hospital admissions have dramatically reduced.

Join me as I share our journey about navigating life’s unexpected curveballs, tools to survive in the moment, and the joy when you emerge out the other side.