Today on the blog I have the lovely (and strong!) Kasey sharing her story of advocating for her gorgeous daughter, Ava. Kasey is a part-time legal secretary on the Gold Coast and mum to Ava (2) and Dayyan (4).  Ava’s story is so inspiring and Kasey’s words really touched my heart so I knew I had to share it here.

Our beautiful baby girl was born in July 2013 by emergency caesarean, we were elated with the intense rush of pure joyful emotion on the birth of our beautiful baby girl. Two minutes after her birth the doctor told us he was very sorry but our daughter looked to have Down Syndrome and they would need to do further testing. My heart was broken into a million tiny fragments with the fear I felt for my tiny, precious baby. 24 hours later the tests came back negative and we began the rollercoaster journey that we are now on for the “Undiagnosed”.

Ava Kalani has a unilateral Optic Nerve Coloboma and Microphthalmia, 2 rare genetic disorders which means that one of her eyes is blind and it is also smaller than the other eye. The doctors in the Special Care Unit were also worried that Ava was not putting on enough weight following her birth and inserted a naso-gastric tube for feeing. They told us that the tube would only be for a few days until she started to put on weight, well…. days turned to weeks …..and weeks turned into an agonising 10 months of constant projectile vomiting, reinserting the tube up to four times a day and spending most of our time at the hospital.

We spent thousands of hours at doctors, specialists and hospital appointments, had hundreds of tests with doctors trying to diagnose a syndrome for her “dysmorphic features” (a term I would grow to despise every time I heard it – my daughter does not have dysmorphic features – she is beautiful just as she is!!!). Doctor after doctor told us the worst, that she might not crawl or walk for a long time but she did! I was told that my baby girl was not ready to eat by herself and I was wasting my time and money on trying a tube wean program. But I was determined to help my baby girl and I knew she could do it, she just needed the chance!!! I sourced my own specialist and attended a rapid tube wean program at the Mater Private Children’s hospital with fantastic success.

Our baby girl is the most beautiful ray of sunshine and my heart goes out to all mums of bubs who are a little different and with any sort of rare diagnosis as we need to fight extra hard to be heard and not characterised in a box. Our bubbas are individuals and not defined by their differences.

Our journey has been filled with the most amazing highs and incredible lows, it has not been easy. Some days just going out in public I was reduced to tears by people staring and strangers making ignorant and hurtful comments whether I was standing in line at the bakery and someone asking me if she was going to die, or walking through the shopping centre with a man chasing me, pointing and yelling “whats wrong with your baby?” All Mum’s need to be strong but some of us need an extra layer of toughness!

Ava made me hope when there was none and be thankful for every tiny “normal” thing she did and now I am incredibly overwhelmed with happiness to say that she is tube free, walking, eating, happy and healthy! She will always look a little different to the outside world and my heart will always shatter into a million pieces with worry for her but, that’s what all mums do, and then we put on a great big smile and give our cutie pies the biggest cuddles.

Have you had an experience like Kasey’s? Has your little one defied the odds like Ava?

Each Thursday I will bring you a real mama who is sharing her story. Whether you are a single mum, a grandmother, a mum of many or a mum to one, a mum-to-be, a step mum, a working mum or a stay at home mum, and you want to share your story about a particular motherhood journey or experience you have had then please get in touch at sara@kidmagazine.com.au.

 

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