Rose’s parenting experience and what brought her to Envisage Families

4 August 2023

By Envisage

4 August 2023

Rose's son Eric was diagnosed with a brain malformation after seizures started at 4 months old. His initial diagnosis was followed by many others which turned Rose's and her family's world upside down. What also turned their world upside down was this beautiful and crazy love they had for their little man and what lengths they would go to for him.

I began my journey to motherhood in 2005 when my darling Eric was born. Motherhood for me started off fairly typically. However when Eric was 4 months of age he started having seizures and this was the beginning of a very different type of parenting journey than I had expected.

My husband and I had thought that life would change when we started a family but I don’t think the changes that we faced were anywhere on our radar.

Eric was diagnosed with a brain malformation and this initial diagnosis was followed by many others which turned our world upside down. What also turned our world upside down was this beautiful and crazy love that we had for our little man and what lengths we would go to for him.

Rose and Eric 2006 - Envisage Families Participants

Over the years since Eric’s diagnosis, our family has gone through so many changes, we had another beautiful boy in 2007, made lots of friends and connections, cried and felt on the brink of despair and loved beyond what we could have ever dreamed possible.

As a mum you don’t want your child to face challenges or difficulties which is why I find it hard to reconcile the notion that I have been made “better” through this journey. But it is true that there are so many lessons and positives that I have gained by being Eric’s mum. One of these has been my partnership with researchers on the development of ENVISAGE Families.

Since 2017 I have been involved in the development and implementation of this program.

The first thing I remember being drawn to was the evidence about the value of families and everyday life experiences. I will always remember discussions about parenting as “A Dance” and thinking (and saying) the dance may feel briefly like a Waltz but more often than not I feel like I am being thrown into the “Mosh Pit” and getting carried precariously along!

Everyone’s experience of parenting and indeed parenting a child who has a disability is different and my experience is so unique and it is always changing. However the LENS through which I see the world is one which I believe to be common amongst families going through this journey.

The common things are that we want people to see our children for who they are, and services to help our children by seeing our family and what is important to us.

We also want to connect with people who share experiences, hopes, dreams, and fears in a space that is just for us.

I have been so proud to be able to work with so many wonderful people on ENVISAGE Families and hope that through the fully funded places in this program that the government is offering that it can make a difference to as many other families as possible. I want many families to be confident to know that they are the EXPERTS in their child’s life and explore ways they can be supported in their journey at different times as their life and family changes and grows.

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