“Light and Glow” - Ziya Raghwani
Ziya’s name means “light and glow” and that is exactly what she embodied for us throughout her full and beautiful little life of 20 months and 6 days. She sadly passed away in 2019 from Mitochondrial Disease. She taught us the importance and value of making memories and how these would not only help us during our time with her but also how treasured they would be after she left us.
During Ziya’s lifetime we had an initial period of adjustment where we were just trying to keep our head above the water. This was where memories were not always in the forefront of our mind because we were in a flight or fight mode most days, and we just really wanted to find out why this was happening to her. It involved a lot of therapies and appointments. Until - one day when we decided enough was enough; we didn’t want to spend this limited time we had with her doing things that we couldn’t remember. We decided to make each moment count, on the day we received the news that she would be under the palliative care team.
We created our family slogan of “Making Memories with Ziya.”
This led us to doing very beautiful things such as getting her hand/footprint moulds, keeping a journal of what her life was like or just something simple like taking more photos/videos. Living in the moment of the good times and soaking in the not-so-great times and making the most out of those too; like family dinners at the hospital by her bedside. However, it also led us to doing some pretty exceptional things with Ziya from raising awareness of her condition on TV to raising funds and doing fundraiser walks. We were even empowered by her palliative care team to do a once in a lifetime trip all the way back to the UK to visit family and make treasured memories with them.
On this side of the journey, now three years later, where we miss our dear daughter and sister so fiercely, one thing we are so grateful for is that we had the privilege and honour of making memories with our beloved because it is those memories that keep us breathing and get us up in the morning. Prioritising making memories with Ziya was the best thing we did for her and us because now we have an eternity of great ones to keep us going until we meet her again one day. Memories keep the person we love alive and for this gift, we the Raghwani family, are forever thankful for our palliative care journey because it is truly a gift; a gift that will continue to enrich us for the rest of our lives because we made the conscious decision to make each moment count.
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This story was first published on the Paediatric Palliative Care National Action Plan Project website.