KU Alumni Connect Winter 2022 Edition
“A special memory was watching the day Evie finally walked into the playgroup. The applause, claps, smiles, cheers, tears and cuddles that were shared that day was so overwhelming. You know in that room were people who only had Evie’s best interest at heart and genuinely were so happy to see her reaching her goals in her own time.”
Our names are Lauren and Gary Stanley, and we are blessed to have the privilege of being Evie and Josiah’s parents. Evie is our first child and was born in 2012. Before Evie was born, we understood that there were a few things not developing at a typical rate, she was small and she had arm and hand abnormalities. Evie a few days after birth was diagnosed with a rare syndrome called Cornelia de Lange Syndrome. This came with a lot of unknowns for us but we were so excited and happy to welcome little Evie into our family.
Two years later Josiah, Evie’s younger brother was born who was pretty much the same size as her. Evie and Josiah really are best friends, and it is a real honour to see their unconditional love for each other.
Life for us comes with some challenges, worries and unknowns but has always been outweighed by the love and fun we have with each other.
When we first walked in the doors of KU we instantly felt at home. We were welcomed by so many warm and genuine people who felt like family. We had been searching for a place that made us feel welcome and celebrated Evie’s differences with pride and excitement and we felt instantly accepted and understood. This was the first time I had ever left my child in the care of someone that wasn’t family, and I couldn't have felt any more confident and calmer. I just knew deep down that the teaching staff at KU were going to look after our girl as if she was theirs. This was the biggest comfort we could have asked for.
Long lasting friendships are something that I will forever be grateful to KU for. While our children played, had fun with activities and experiences set up for them, us parents were able to have the opportunity to sit together and have a cup of tea that was HOT. This time together was facilitated by a KU staff member that enabled us to talk and share our experiences of what it was like being a parent of a child with a disability. I know this time for many was the only time in the week they had an opportunity to feel heard and just feel like they were not alone. In this group I met some of the most amazingly kind, hardworking, honest, genuine and real people.
Watching Evie have an environment that fostered her learning new skills, making friends and gaining her independence was life changing for us. Evie really blossomed at KU and grew in so much confidence and my only regret is that we didn't start there earlier.
There are friends and teachers I still have contact with and would consider them some of the closest and deepest friendships I have had in my life. It doesn't matter how much time passes between cups of tea and catch ups. I have been extremely blessed to have made some real long-lasting friendships. I think there is an unspoken bond and we all know that whatever comes our way we have established such a solid foundation in each other's lives that we have a support network that is always dependable in any situation.
Over the years we have supported each other in babies being born, diagnoses, challenges, marriages, death, the scary world or starting school, understanding the NDIS, food issues, medical complications, the hurt, the sadness, the fun and the joy. KU enabled this and I will forever be grateful for what we had and still have with each other.
KU was really the first place after years of searching to give our daughter the opportunities she deserved and so passionately supported our family's journey in caring and advocating for Evie. KU was a place that had such great information and experienced and dedicated staff that were so knowledgeable about disability but also how that works in the real world. It was tangible, effective and really met parents and families where they were at and were never judgemental. I saw families turn up on their first days in tears and with no hope because of so many unknowns and walk out with the confidence and skills to advocate effectively for their children. They were given permission to feel what they were feeling, grieve but then given tools to help assist working through that for the benefit of their children and their children’s future.
We just really want to thank KU, especially the staff and teachers at Airds and Cobbitty that loved us so deeply and treated us with the utmost respect. We learnt so much and met some amazing families and people along the way. We will never be able to repay KU for the love and hard work put into our beautiful Evie and the kindness and patience given to her. Evie is turning ten this year and is living her best life. She is not just walking but running and is giving life her best in everything she does. She is communicating with her iPad and has definitely mastered requesting anything on the dessert menu. She is kind, funny, caring, empathetic and the cheekiest and sometimes naughtiest little thing. The teachers at KU really did have a major part in moulding and nurturing her.