Updated: May 7, 2019
Rudolf and I actively chose Cairns to be our home and the place we would bring up our children. We happened across Cairns between our times in the US and the UK and decided we would make it our base. At the time we were nomads with very little to our name, so we figured that if we purchased a little place it was forced savings. We were pre-kids and all our money went to traveling and having fun. I have to add that at that stage in our lives we were definitely opposed to doing anything that remotely resembled 'adulting'. Within six months of moving into our little one-bedroom apartment, the travel bug bit again. We locked up and took off to England.
In the July of 2000 I returned to Cairns with a bump in my tummy. Natasha was born in the September. Rudolf and I met in 1984 so the arrival of our first child some 16 years later was not really in our thoughts about the future. Although we were aware of being a childless couple to that point, I guess we'd just accepted that children weren't going to come. We'd had a few conversations about trying but were consumed with all the different experiences the world could provide, and I was very committed to my career.
So along came our Tasha. Wow, doesn't the world change? You see things different; you're values change; the world is a different place. I remember saying to my Dad that I'd always seen the world in colour, but that now it seemed fluorescent. I learned quickly that I knew a lot about child development, less about child care and nothing about being a parent.
Despite all those things that come with babies, that we all giggle or cry about, Rudolf and I were hooked. We were completely in love: head-over-heals. We wanted more. We tried, I conceived and we lost. It happened again. I can't describe the pain of our grief and then Sebastian came along. We dared not hope at the beginning, but in May 2002 our beautiful, beautiful boy came to us. We loved our babies so much so we tried again, but we lost. By then the pain was too much. We decided to focus on what we had: our family.
Both children were born in Cairns and Cairns was home to us. Our families lived south and when anything went wrong or I didn't know what to do I was in contact. It didn't occur to us to move. I wasn't one for playgroups or mother's groups so I didn't really connect with others in my community. It was a mistake. I don't recommend it. Money was tight so I returned to work. Rudolf was a toolmaker and industry opportunities up here were limited so he stayed home with the kids. He was an early generation stay-at-home-dad. Most parents groups were actually mother's groups - not Rudolf's scene. We were isolated.
Work felt different to me after the kids. Over my career I'd mainly been in peadiatrics and I'd like to think I was empathetic to parents before kids. I know after, my approach changed and I noticed things differently. A pattern I started to notice was parents I was working with leaving Cairns; their community; their home.
When a parent has a child with a disability, and while they are trying to come to terms with their grief and understanding of what this means, they are hit with 'medical intervention' and 'early intervention'. Decisions are needed. Learning is needed. A clear head is needed. Time is critical. Pressure and pain is mixed in and gets in the way of what's needed. The statistics of relationship stress and break down between parents are high, and there are no surprises about why. No matter where I'd worked in the world, I'd noticed this pattern of disproportionately high relationship breakdowns, what was new to me in Cairns was the trend of moving away from friends and family in pursuit of expertise.
I couldn't accept that this was a reality of living in a regional community, and having a child with a disability. Roll on a decade or so, and things are different now. Technological advances are bringing expertise to regional areas more and more, so I imagine the need for moving will become a thing of the past. What stays with me, though, is the importance of a strong network around parents. Every child irrespective of whether they have a disability or not, needs a parent who is at their best; and I would argue, every parent needs a strong support network.
Rudolf and I did not build this network and it was stupid. I know so many other parents up here, without family and doing it alone and I want to give advice. But, when it comes to advice, everyone has some, particularly parenting advice: what their parents did, what their grand parents said or did, what their uncle or aunt (or some distant relative) think is best. Everyone has advice, and when you have a child with a disability, it doesn't always feel like a fit. All the judgements when a child is delayed in their development, or has meltdowns, or looks different. It's enough to make any parent close the door on their network and go it alone.
This isn't the right thing to do. Your child needs you, and you need a strong, supportive network. If all these people are offering advice, sift through. Most of the time, you'll be right: they don't know what they're talking about. They don't know what you are going through. They don't understand. You are your child's parent; even if you don't think so, you are making the right decisions for your child and family. Others may not make the same decisions, but tell me any two parents who do this anyway.
Reach out to those who you think understand and are a fit. My only advice is don't isolate yourself. It's lonely, it's draining and it's fatiguing. Reach out to those you feel are a fit for you and your family. Strengthen yourself and build your emotional capacity.