Imagine a young mother gives birth to a baby girl. This baby girl is found to be severely intellectually and physically disabled. She is taken away from her mother who is unable to care for a child with special needs and placed indefinitely in an institution for intellectually disabled children.

Imagine, that despite the kindness and best intentions of the staff who look after that baby girl, she does not know the safe and consistent warmth of being cradled in her mother’s arms and the closest thing she has to family are the nurses at Princess Margaret Hospital who see her so regularly that they create a photo album of her baby years. During those many nights she spends in hospital, she has no-one sitting by her side, holding her hand and reassuring her that she is safe and loved.

Imagine, that four years later, that same little girl still lives in this institution. She is heavily medicated and the busy staff have very little time to devote to reading her a bedtime story, singing her a lullaby or lavishing her with cuddles, let alone encouraging the little girl’s personality and talents to blossom.

Imagine, that just before her fifth birthday, you are introduced to this little girl. Her name is Jess. She is beautiful … radiating warmth, hope and mischief. Imagine you are told that Jess is blind and deaf, will never walk or talk, must remain heavily medicated and will only ever experience food through an external tube which runs directly into her stomach. As you sit there with Jess, can you imagine what the future might hold for her?

Four years ago, as I sat there with Jess, I truly did wonder what the future would hold for her and what my role in that future would be. Little did I know that Jess and I had begun a truly magical journey!

Through Citizen Advocacy, I had the opportunity to become Jess’s “advocate”. The roles I have played in Jess’s life over the last four years have changed constantly.

When I first met Jess, she was in desperate need of pure love. I spent many afternoons, for many months, sitting with her snuggled in my arms, soaking up the cuddles, warmth and lullabies she had been deprived of for the previous four years. As I grew to know Jess closely, my role evolved to that of investigator and spokesperson, as I queried the various medications, operations, and to my horror, a “Do Not Resuscitate” order on her file. Most importantly however, I was a presence in Jess’s life that communicated to her carers that someone was always watching out for her best interests, making sure that she received nothing but the best of care.

In more recent years my role has changed again, as Jess was fostered out to a wonderful family who have provided the full time love and attention she so deserves. My role now is to advocate on Jess’s behalf while also providing support to her foster family. This usually involves simply taking the time to share Jess’s latest achievement, (and there are many!) or the obstacles they may encounter in providing the best care for Jess.

And I bet you’re wondering what the future did hold for Jess? She is now 9 years old. She goes to school every day (her favourite class is swimming), loves listening to music and watching her Hi5 DVD, eats all kinds of yummy foods, can speak enough to express her feelings, is healthy, and is a cherished member of her new family.

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