Julie-Ann’s Story

... by Robert's mum

Hi, I'm Julie-Ann and I'm proud to be the mother of an admirable man who is now approaching his 30th birthday. When we first contacted the YOU Group, Robert was not even in his teens.

I remember distinctly the intense love I felt for Robert the moment I touched his head at birth - it was always secondary that there was something "wrong". During his infancy and childhood the prime awareness was that my husband and I had this fabulous child and it just happened that there were extra issues involved.

My first explanation of having bladder exstrophy and epispadias is that it so complex! There are lots of technical issues and you really are in the hands of your surgical team. Looking back, I know that I learned some assertive skills but I have some regrets that I didn't develop these more quickly.

My strongest memories of special needs are: skin care, prevention of odour and therefore stigma, practical clothing, recognition of grief & loss, management of 'supplies', education of others, laundry, family balance and self care (where should that be on the list!)

During those first few years the Royal Children's Hospital was a significant part of our lives. Just before Rob turned 4 he had surgery to create a urinary stoma. Right from the start Rob emptied his bag of urine.

What a pleasant surprise it was to find those Stomal Therapy nurses - and what great relief they gave with the support and knowledge they offered. No matter how good the nursing and medical care on the ward, you still have to go home, whereas the care provided by the Stomal Therapists carried over to home life.

Overall it was our intention that Rob should lead a 'normal' life and have some participation in decision making. This was not the only aspect of his life and having a stoma did not define who he was and what he could do.

The complexities have made for a bumpy ride for my son, and this will always be a sadness, but we have this clever and kind man who has considerable wisdom, great character and much to offer.

The above was presented at the "Who Cares For The Carers?" Panel Discussion as part of the Y.O.U. Inc Meeting held in conjunction with the ACSA Annual Conference (October 2010)

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