Ziya means light and glow and that’s exactly what she embodied throughout her little life and in many ways still does today as I stand here before you all. Ziya was born normal or at least in the normal sense of what the world viewed normal to be, then at about 2 months of age she suffered from an almost fatal episode of Status epilepticus. I thought she was going to die that night when there were about 10 people leaping on her little shaking body in the ED and it all felt like a nightmare scene from a movie in those few moments that felt like hours. The journey started there I suppose because it was then that I knew our life and her life was about to change. What I did not fathom though perhaps is how much this change will impact her little life and as a side effect our entire world really.
Having a child with a rare disease like Ziya who had a rare subtype of Mitochondrial disease called KARS is quite a daunting and scary experience. She is one of eleven documented cases in the world with this particular type of Mito. She is special, fierce and a warrior in the truest essence of the word. I met Monique and the gorgeous superstar Nathan on a Christmas morning of 2019 about 2 and a half months after Ziya died, we were there on Christmas day on the wards of PCH to spread some cheer and show other parents that we remember them we see them and we hear their struggles through the holiday season. I opened the first door with little Mahi 4 years old holding my hand and there seated was gorgeous Nathan and his amazing Mumma doing her warrior mum thing! We clicked instantly and ever since then our kids have deepened our friendship and bond to a level that is perhaps ethereal. We made a pact together in the coming months and years as Nathan went on to grow his wings too a few months ago that we will together make the change needed for all other families so that they may have a deeper more meaningful experience in their journey and hopefully that will be literally life changing for them. It is incredible how much strength resilience and grit can be born of a wounded mother’s heart! We are living proof of that as a collective.
The mental health side of this journey has been challenging to say the least, I personally along with many here to today suffer from a wide array of mental health issues that I battle with day in day out. When you have a child like Ziya your body tends to go into a fight or flight mode, you know nothing but survival and you do everything in your power to make her life better. That’s what I did but it came at a cost. It costed me my mental health in such a way that I may now spend my entire life untangling and re-wiring my brain’s psychological and emotional states into a state of inertia. What brings me and my family here today is Ziya and to let you all know that Ziya a mental health and wellbeing program that Monique and Nathan’s centre propose would help other families like ours to ensure that they don’t have to pay the same highest of highest costs without help. It will ensure that while survival instincts kick in there is a solid backing of amazing resources that would help support them to ensure that the long-term impacts of this journey don’t take a toll.
Update* Preeti was accepted into medical school and is now a med student!
After Ziya passed, I knew that my life had to bifurcate in order to make sense existentially. I took thecourage to then make a promise to myself to keep on fighting for Ziya and for all the other families and kids who could benefit from all the rich experiences I had to offer with Ziya. I decided I wanted to study again and become a medical doctor. I pursued further master’s studies, I went back to clinical physiotherapy work, and I sat the gruelling medical entrance exam and am about to sit it again for the third time in a few weeks. Why? Because I want to make sure that Ziya’s fight never ends and her soul and the essence of what her name means outlives everything else. I want to help change one life at a time and I know that I can only do that if I focus my energy, my grief, and my resilience into this part of the journey after Ziya that can be beautiful and meaningful. This is the path I have chosen as a wounded but fierce mother of a little warrior who may no long remain an existential blip… not if I can help it!
I lost Ziya in 2019, I died too that day or at least a part of me did. The biggest takeaway from my little speech today to you all would be to remember that loss through the journey and after comes with an intense amount of deepened grief and that comes with a price of life-long suffering. The power is always within us to make a change and that comes from somewhere very deep in our human spirit. By supporting Nathan’s centre, you will help build bridges for drowning carers and broken parents who might go on to outlive their children. You will bring hope and you will bring Ziya – Light and Glow…