How to Describe Veronika {guest post}

I’m not sure who is more famous, Veronika or her mum, Kylee, but there is no doubt in my mind that they are both remarkable women who inspire those around them each and every day. I am so glad that Kylee is able to share part of their family’s story here – a story of defying odds, of challenging stereotypes and of so much love. Thank you Kylee x


Last month I went to speak at our local TAFE to a class of students preparing to become individual support workers for people with disabilities. I was invited to talk to the class from a parent perspective about having a child with a disability and how this impacts our family and our day to day lives. This is something I have done for the last couple of years, each time there is a new class of students.

The day before I went I asked a question on Veronika’s Facebook page, Veronika Will Walk, our ups and downs with Cerebral Palsy.

This was my question.

veronika1“My Mum needs some help for something she’s working on for tomorrow.
Please leave a word or two, or a sentence about how you would describe me (Veronika), and then where you live.

My mum will go first…

wilful
cheeky
loveable
Princess warrior
~ Tasmania, Australia”

The following morning when I went to talk to the class, I started off by reading a list…

Trisomy 21
Down Syndrome
Congenital heart defect
Hypotonia
Cerebral Palsy
Hemiplegia
Brain injury
Grommets
Hearing loss
Vision loss
Heart failure
In-utero Bilateral strokes
Epilepsy
Central Sleep Apnea
Fits
Seizures
and the list went on and on….

This list are the words that medical professionals have used to ‘describe’ Veronika, my daughter, my warrior.

This list of words are clinical terms or diagnoses that Veronika has been given in her lifetime.

But none of these words actually describe who my girl really is – her uniqueness, her individuality, her larger than life personality.

I then had the teacher at TAFE open up Facebook on a large screen for the class to see and we looked at the comments from the question I had posed the night before. Some of the responses included…

“Courageous, Bubbly, Determined, Intelligent, Wise beyond her years – she has so much to teach this world. ?”

“Heart capturing Smile, gorgeous face, and now, Inspiration, a Fighter, and I bet a Bubbly girl with an Attitude to match as in (Nothing in this world is going to stop me), just a lovable little girl ~ Hobart, Tasmania.”

“Strong, determined, cheeky, happy, inspirational, brave – White Beach Tasmania”

“An inspiration, an educator…I am a teacher and a mum…you have taught me so much over the years Miss V, thank you!” 

“Resilient, funny, curious and beautiful ? Hobart, Tasmania.”

“Fierce… Important… Perfect. ?
South Arm, Tasmania”

“Resilient. Strong. Inspiring. 
Surry, Maine, USA”

“Adorable, unstoppable, inspiring and fun. She captures your heart and lights up the sun. I love Miss V so much xx Sorell Tasmania.”

Learner with Grit and with an ‘I can do’ attitude. Hobart”

What I wanted to show the class was the difference between the two lists. None of the people who follow Veronika’s journey through her Facebook page responded with anything mentioned on the original list of medical terminology. Many of the people who responded have never met Veronika in person, they ‘know’ Veronika through following her journey on social media.

Veronika is more than a diagnosis. Her extra chromosome is her genetic makeup. Yes, Veronika has Down syndrome, but she is not Down syndrome.

I talked to the class about the importance of seeing the person, not a diagnosis. The importance of getting to know the person that they would be supporting once they enter the world of being a support worker.

Talk to the person, not at them.

Ask them what they like and don’t like.

Don’t refer to the person by their diagnosis, use their name. The use of people-first language is very important.

Treat the person how you would like to be treated – with respect and with dignity.

Over the last eight and half years since Veronika survived her birth, I have been incredibly blessed by what my girl has taught me. My life is completely different from what I had imagined when I was pregnant with Veronika. A better kind of different.

When the NICU doctors came to talk to my husband and I soon after Veronika was born and taken to NICU, I thought they were coming to talk to us about her brain abnormality, which had already been discovered at the 36 week check-up with our obstetrician. I didn’t realise they believed she also had Down syndrome. Those words from the neonatologist were shattering at the time.

I cried an ocean of tears at the diagnosis, but if only I knew then what I know now. If only I knew just how much joy Veronika would bring to us, just as her brothers do too; how amazed by Veronika’s resilience and determination I would be; how much we would celebrate each milestone that Veronika would achieve, because we know how hard Veronika works and how many hours of therapy have gone into each achievement.

For us, every day with Veronika is a blessing. We were told by our obstetrician before our girl was born that he didn’t know if she would survive her birth. Veronika survived. She is our precious miracle with 47 chromosomes and she is very very loved.

Veronika completes our family perfectly.

Photograph by Dani at Dream and Just Believe Photography
Photograph by Dani at Dream and Just Believe Photography

Kylee is wife to Marcus and Mum to Jordan 14, Jakob 11, and Veronica, 8, whose lives were all changed on 28th April 2008. At the 36 week check up when pregnant with Veronika, Kylee’s obstetrician noticed the baby had a severe brain abnormality. Veronika spent her first 5+ weeks in NICU before she was able to go home with her family. Over the last 8 and half years they have learnt so much on their journey with Veronika, their medically complex warrior. Kylee is passionate about giving her girl every opportunity. She doesn’t limit Veronika’s potential, and she doesn’t let anyone else limit her either. You can find more about Kylee and Veronika through their Facebook page and blog.

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