ZIYA

Ziya means light and glow… and this is exactly what she brought to our lives when she was born. As I held her for the first time, I had imagined her whole life in my heart and wished nothing less but a world of fulfilled dreams for her.

Unfortunately, the universe had other plans and a few weeks into her life we were thrown into this scary isolating and very lonely world of unknowns as Ziya was diagnosed with profound hearing loss which meant she was completely deaf. People deal with difficult life changing events in different ways… for us it was “What’s the fix?” Ziya would need bilateral cochlear implant surgery to help her hear again. As human beings we learn to compromise in difficult situations and this is exactly what Janesh and I did.

We were just about getting used to the idea of her deafness; learning and navigating through an array of hospital/specialist appointmentswhen at 2.5 months Ziya had a massive seizure.At first it was like she was just shivering but very quickly it escalated and the next thing we know we are surrounded by about 20 people in an emergency room; it felt surreal like something out of a movie. All I remember that day was not being ready to lose my little girl… I could see all sorts of tubes and lines going through her it was hard to see the beautiful baby underneath all that.

The days/weeks that followed consisted of ICU stays, Ward staysand Discharges only to be catapulted back and forth into the system for the next 9-10 months with recurrent readmissions. All the tests kept coming back normal. I couldn’t understand why this was happening? Why were we not able to find any answers? The genetic services of WA were phenomenal in their support and never stopped looking even when it felt like everyone else had.

One day… nothing special about this particular day, the Geneticist who had been relentlessly searching for answers called me and said they had isolated a gene that could be the possible cause of Ziya’s condition. It was related to mitochondrial disease. Of course like any other parent I started researching the more I researched the more I realised that the world of mitochondrial disease is not straight forward. Ziya has a KARS gene mutationwhich means she is 1 of only 11 children in the world documented with this mutation and it falls under mitochondrial disease. The neurologists then proceeded to tell us that this is a life limiting, progressive and terminal condition and mostchildren like Ziya don’t live a very long life and often deteriorateas the years progress. We were then referred to various teams one of which is Palliative Care. Things which no parent should have to discuss were discussed in the meeting with them and the world terminal and life limiting was put into perspective and the situation we found ourselves in forced us to have to think about the end of life care and a plan needed to be put into place.

The paradox of this whole situation lies in the root of it all… end of life is end of life… we will all face it one day… the only difference is that we have an inkling… a hint… a tiny speck of speculation of when it may occur for Ziya… and in the midst of the sobbing I wiped away my tears… smiled down at her… kissed her forehead and realised that moment that my life is just as short as hers and hers is just as short as anyone of you…

In the end… sadness is an emotion to be felt and processed and honed back on whenever needed but never to linger in that state… My biggest gift to the world is my Ziya… she has taught us more than we could have learnt in several lifetimes. Happiness is something we now truly learnt the meaning of and it is something we do not take for granted.

Our day to day lives consists of uncertainty and mental challenges (our hospital bags are always packed and ready in the spare room in case we have to go). There is always a contingency plan in case of an emergency with Ziya. There is over 11 drugs Ziya is on that sustain her, keep her comfortable and basically save her life everyday that’s up to 24 doses in 24 hours. In the midst of all this there is the feeding through the tube since she can no longer eat with her mouth and the constant weekly hospital appointments that keep our life very busy. Our daily life is very different to what it used to be or what I had ever imagined it would be with a 3 year old and a 1 year old but there are lots of bright rays of sunshine between the grey clouds. We still have laughter… we have fun… we take a breather in between the hard parts and we soak the good parts in… we have walked through fire and made it out the other side and like many other special needs families out there will tell you that it truly is a make or break situation and it puts every and all relationships to the test but we survived.

Take what you would like from this story but please know you are not alone… There is always light in what feels like a dark tunnel ahead. Mitochondrial disease is a young subject something that still hasn’t been researched fully or understood fully… we hope Ziya can inspire researchers to be more interested in it and to focus their research on rarer forms of the disease in the hope that someday we may cure another Ziya in another lifetime and if My Ziya can contribute to that she will have accomplished more than I had ever dreamt of the day I held her in my arms for the first time…

A LITTLE POEM ABOUT ZIYA

Hi my name is Ziya…
I am a small-big miracle for my mum and dad…
They love me unconditionally…
Even when I am so imperfectly perfectly perfect…
They still love me and they both move mountains for me everyday

The universe hasn’t been too kind to me…
The first few months to my life have not been like yours…
I have had to fight for my life…
I have had to face what you may not have in your entire lifetimes combined…
My mum and dad have been there with me every step of the way ever since to give me that boost I so desperately need…
Part of that is finding out what’s wrong with me… why am I not able to do what others can who are my age…
It’s hard for me and my elder sister and my mummy and daddy but mostly it’s hard for me…

Some days I smile and laugh and giggle… 
My mum cries sometimes watching me so happy… I know it’s happy tears because she always smiles in the end…
I always try and tell her how much I love her through my smile and loving giggles when she calls to me…

I heard my mummy’s voice for the first time in ever a few months back and I was just mesmerised all I could do was smile at her…
It was a hard journey to get them to fix my ears they put up a fight but in the end my mummy and daddy won…

When I was 2.5 months old something scary happened I couldn’t control my hands and legs and I started struggling to breathe… my heart felt like it was going to pop out of my chest… most of the time I didn’t know what was happening it went on for hours… in between I was able to gasp and I tried to tell my mummy and daddy I was not well I let out a cry that I had hoped they would pay attention to… I was really struggling and I almost thought I wouldn’t see my mummy daddy and big sissy again… 

I woke up and I didn’t know what to do… 
I couldn’t drink my milk when mummy gave me my bottle… my tongue refused to do what it was supposed to… my mind wasn’t doing what it was supposed to anymore… I was surrounded by all these strangers… I had a tube in my nose and it was so uncomfortable and painful at times when I coughed it made me gag a lot and I didn’t like it… 

I was so sleepy most the time in the beginning especially when my mummy used to put all those coloured medicines in my tube… I know my mummy and daddy were so worried when they brought me home that day after spending a month in hospital…

I was not able to lift my head up anymore… I couldn’t drink like I used to anymore… I couldn’t move my legs up in the air anymore… I couldn’t tell my mind to move my hands and legs the way I wanted them to anymore… as time went on I started feeling stiff…

I could see my mummy everyday relentlessly working so hard to get me answers always fighting for me writing so many emails calling to so many doctors and knocking on all the doors she could all over the world to see if someone could answer… I could see my mummy so tired as I was keeping her up all night because I was vomiting so much I couldn’t help it my stomach just churned and I would throw up all the time I couldn’t control it… I could see my mummy so tired but still being so brave and smiling and giggling with my big sis and playing with her even when she could barely stand up…

I could see my daddy working so hard every day at work for me and my mummy and sis to make sure my mummy could stay home and look after us both… I could see he wanted to help mummy because she could hardly stand at the end of the day. Big sissy and I need lots of energy .. I could see mummy and daddy laughing and playing and keeping all those scary feelings away from me and big sissy… 

I am so proud of my mummy and daddy and sister they look after me so well even on those days that my brain is just so overwhelmed and my body has been shaking for hours sometimes but they are there always besides me helping me telling me it’s ok and it’s going to be ok… My mummy says that she’s the luckiest mummy on earth she got to be “Ziyas mummy” but I say I’m the lucky one I got to choose my mummy in this lifetime… if I could I would choose her in every lifetime over and over again to help me through this… 

I love my mummy I love my daddy I love my big sister(s) in heaven and on earth…

Leave a Reply