I have been thinking of a few things lately - mostly because I'm feeling a bit reflective - at the top of the list is who I was, what I expected to be when I was a grown up and given that at over 40 I am undeniably a 'grown up' (of sorts!) - who am I now? What happened along the way - what were some fo the most significant things that have guided and shaped my journey?
I know a number of people on the 'special needs journey' who quote the very applicable and lovely road less travelled ... 'and that has made all the difference'. What bits I wonder have made all the difference for me? I can tell you I have felt that I am on the road less travelled for a long time before I became a 'special needs mama'.
When I was 10 my family moved interstate from Brisbane. There I was part of a pack - my cousins were very close - for my primary education there we all went to the same catholic school - the one that was local to where my Aunt and her three children and my Grandmother lived. I recall being happy go lucky. Family drives. Lots of visiting of rellies - I remember not being able to visit my grandmother on Saturdays as she would be glued to her old radio listening to the 'gee gees' or horseracing as it is more widely known. I remember my eldest sister stage managing us siblings and cousins into 'performances' and dress ups. I was particularly close to one cousin and she and I would walk the streets for hours just passing the time...
My mum's family were country folk - her Dad a boundary rider/rabbiter/horsebreaker etc in swQLD. Dad was a city boy (if Brisbane in the 40s and 50s was anything like a city!!). He met her when he went to visit one of his sisters in the country - and stayed. He was 16. She was 18. They got court permission to marry (as he was under legal age then) and were married on Mum's 21st birthday.
Both my sisters were born in that country town. The middle one of us 3 girls was a rubella baby. She had to go to Brisbane for heart surgery. She was vision impaired and profoundly deaf. I imagine that was a significant factor in the family moving to Brisbane. My grandmother and aunty moved there too around the same time I think. My aunty never divorced but I have no memory of her husband at all - as far as I know he can still be found in that same country town.
As the baby of the family I was very spoilt. I don't recall any resentment of my sister who was deaf. I remember being friends with her, sharing a room with her. I remember her fiercesome temper tantrums and the teddy bear that she has still that she loved - he travelled with ehr when she was very young and she was sent to a baording school for deaf children. I know that she was homesick - especially after an aunt who had been living nearby the school moved away. I remember driving down to visit her.
Now as Hannah's Mum I can only imagine at the stress it must have put my parents under. To send off such a small and cute little girl off to school. It is a school that was very well known at the time and is still well known by many. It was run by nuns. I fondly recall the home film of my sister at the sports day - her cheeky grin as she ran along the logs and jumped around, happy. After a time though it just wasn't working - she was so homesick. How that must have hurt my parents. How they must have agonised over what to do. In the end she was brought back home and enrolled at the state special school for blind and deaf children. I can't recall much of who she was then - to my childish mind she was just my sister. Dad and my eldest sister attended workshops for cued speech I learned a form of pigeon sign language - taught by my sister - complete with 'deaf speech'. For example instead of signing teacher correctly I would repeat back how she said it 'bibi' and she would read my lips to know what that was.
Once we moved to Sydney she went to a school for deaf children here. Adolescence was hard. There are so many things from this time that I wish I could change. I don't know if they would have made a difference but they would have been worth a try. There was a time when i was so angry and resentful of my sister that I hardly spoke her name. I saw Mum and Dad struggle with how to help her. She was furious and so lonely - it must have broken Mum's heart. When she finished school I know how very proud Mum and Dad were of her - She got a regular job. She saved her money and travelled overseas. Dad would drive her into the deaf club each week so that she could socialise with the people she desperately needed support from - the deaf community. This was mostly a good thing but there was also some bullying and teasing which was hard for her to manage. They were also beaming with joy for her when she got ehr licence and bought her first car. Eventually she fell in love, got married and had 3 beautiful children. Her achievements still are wonderful. She has succeeded in living well, in creating a home, in coping in a hearing world. She is a strong advocate within the deaf community. She is a lovely and funny person. Loyal and still fierce. Incredibly intense in her passions and her anger.
She has taught me so much about myself and our family. She is a guide for me as I try my very hardest to be the best parent I can be for Hannah and Kit. The things I look back on and see in my parents - some of those are now my experience. Some things I look back and see in my sister - are Hannah's and well - some of mine - they will be Kit's - with a twist - a very important and significant twist. I truly believe that it is so much easier today - I have wonderful supports available. I have experience to tell me to make the most of them. I have an online community that is pure gold. Knowing that my family 'survived' and 'thrived' means that when I first got Hannah's diagnosis I felt more ready than if I had had no experience of difference and disAbility. That road less travelled? I was born on it. I never knew other kids who had siblings with a disability although of course they must have existed! When I was out with my sister her voice had the tone of the deaf person. Our fingers would fly and people would stare - yes I was brought up knowing that life isn't a one size fits all affair. It has stood me in good stead for the me I am today. I felt comfortable (mostly) being different because it is all I'd ever known.