... 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)
Young Ostomates United Inc