Mary’s grandparents .....

Rita and Jo 

Mary was born 14 years ago with spinal bifida, and hydrocephalus.  The doctors called in the family to ask them what they wanted to do.  They unanimously decided to give her a chance of life. At 7 days of age Mary had a shunt inserted into her brain to drain off the fluid. The journey was hard for Mary’s mother who was a single mother with two other children to support.  She lived a two hour drive from Brisbane and as Mary needed regular medical treatment, trips to Brisbane specialists and hospital stays the financial and emotional cost became almost unbearable.  

Mary's epilepsy was diagnosed when she was about five when she had a tonic/clonic seizure.  The medication controlled this mostly.   

Five years ago after much family discussion Rita and Jo, Mary’s grandparents  became her legal guardians.  With Rita’s background as a nurse and with Jo as “her rock”  chief cook and person to do the washing  they love and support Mary in whatever way is needed at the time.  Every second weekend her mother travels to Brisbane to take her back to stay with her sister Camilla and big brother Matt..    

When Mary was 10 she had spinal surgery which was successful.  There were risks to consider with this operation but it was needed to solve her breathing problems, help her sit up straight and help her to become more mobile. Once again with Rita’s nursing experience she was not frightened when faced with the extra responsibilities and difficult situations that arose.  Mary stayed in hospital for 2 weeks and came home wearing a back mould that needed to be worn for a few months.  She was not able to attend school for more than 3 hours per day so Rita and Jo drove her to and from Craigslea Primary School (a long distance from their home) for weeks so Mary could have a regular routine and social interaction.  The  regular school bus driver was not allowed  to lift  clients and Mary needed transferring during this time.  

Three months after the surgery Mary started to have complex partial seizures.  The family has tried several different medications but the seizures continue, though not as intensely. Rita can honestly say that dealing with epilepsy has been the most frustrating experience for everyone caring for Mary. 

Mary remained at Craigslea Primary School which has a special disability unit until she completed primary school. She now attends Aspley Special School and is transported daily to and from school by a Department of Education  bus.  This school focuses on teaching independent living skills – the theme “Independence for the Future”.  On Thursday’s  Mary’s class visits community organizations, goes to the shopping centre, the library or other places of interest.  At school she is learning cooking, numeracy and literacy.  

Rita and Jo receive support from SAFS (Shared and Family Support –formerly WR Black) and the Spina Bifida Association. They have a support worker to take Mary out each 2^nd Saturday.  Mary  attended special training sessions at the Spina Bifida Association where she learnt to transfer herself, make her own bed  and  attend to all her personal care needs.  

Rita’s philosophy is “A sense of humour has carried me through life”. She feels that this  sense of humour came from Irish ancestors. Jo is Irish and  Mary still has trouble with differentiating when he is joking and when he is serious.  Most of the time now she can tell and can laugh at the joke. 

Rita says that even if she had known then what she knows now about the hardships that have arisen while being Mary’s legal guardian she and Jo  would not have changed anything.