The art of biting my tongue

I was sitting up in bed the other night reading my copy of the journal, The Lifted Brow. I was reading it at a ridiculous hour of the night because I often stay up much later than I should. My …

An Unexpected Motherhood – the story of a woman with Down syndrome who has a child of her own

*This story was originally published in Voice The Journal of Down Syndrome Australia, Issue 1 2016 and republished with permission. I am the author of the original article* Times are changing rapidly for people with Down syndrome as every year more …

Passing the Baton on…the importance of sharing the lived experience of raising a child with Down syndrome

This week, as I was scrolling through my newsfeed on Facebook I noticed a screen shot posted by a friend of mine in America. His name is John and he is dad to the very adorable Owen, who has the coolest flop of wavy hair and also happens to have Down syndrome. After I read this screen shot, I was taken over by a moment of lovely clarity and enormous pride. My mind was cast back to when I first met John online and the enormous impact he had on me when he got in touch.

John and Owen – photo provided by John

I started this blog back in March 2013. Wade was 14 months old and I was just starting to find my way in this new world.
Having an unconfirmed prenatal diagnosis for Down syndrome meant 9 months of complete unknown. Life consisted of percentage chances of this or that and a long list of maybes that may or may not be relevant.
I remember being consumed by wanting to know what my future would look like. On the whole I was comfortable with the idea of raising a child with Down syndrome but it was a process to go through all the ifs, buts and maybes about what that would entail. Some days were easier than others and some days were harder but when I looked at the roller coaster of emotions I had been on during my pregnancy, I realised that I had come out the other side relatively unscathed and with a positive outlook for my future.
I was probably a bit naive to some of the challenges ahead of me but once I met Wade, I knew I had been through an experience that you could only understand once you had done it yourself.

Once I came out the other side, I wanted to pass that information along so that other people might find a story they could connect to as well. While I expected that family and friends would be curious and want to know a bit more about my story, I was really hoping to reach other parents who had received a prenatal diagnosis like me and were looking for a story they could relate to.

It’s not the 60s anymore…it’s time to update the advice given to parents about Down syndrome

I was listening to a story recently of a woman who became pregnant with her first child when she was just 16. My mouth sat open wide as she explained how hard she had to fight to keep her baby, being a “good Catholic girl” in the 1960s.
It was the norm back then. Young mothers pulled out of society and whisked ‘away’ somewhere to either have a termination or disappear for a while until the baby was born only to be forcibly removed and given up for adoption. These sorts of practices were commonplace and considered to be ‘for the best’. This woman had all sorts of so-called experts in her ear, from the local priest, the doctors, family and friends weighing in on what was best for her, the baby and ‘good taste’ apparently.
It’s not like that anymore. Society has realised over the past 50-60 years that it’s not the end of the world if a young mother has a baby, actually. We know that tearing children from their mothers and raising them in foster homes or boarding houses away from them is not the recipe for a well-rounded upbringing.

We know that so we don’t do it anymore.

In the story, the woman recalled how her son was called a “bastard” purely for being born to an unwed mother. She talked about how little support she had and how hard it was back then. This woman was a trail blazer, refusing to be told what was best for her and being a part of change that would bring us to the better place we live in now.
No one looks back at those times and considers it ‘Best Practice’. No one looks at the damage done to young mothers and their children as a result of forced separation and uses that to advise young mothers today.

We know it is better to support parents through challenges rather than demonising them for their choices. We know that when we stop telling children they are ‘worthless bastards’ who should never have been born, they grow up having more pride, confidence and control over their lives.

When a young girl becomes pregnant at 16 today…we don’t go looking to the 1960s for advice…

….so why are we still doing it with Down syndrome?

When parents are told prenatally their child has or may have Down syndrome, the information and advice given by many health professionals is wildly outdated and skewed heavily on the side of Doom and Gloom.

For who Wade was named…

Anzac Day is getting harder for me as every year passes. I am standing by helpless as one of the most admirable, dignified and courageous people I have ever known sails quietly towards the end of his days. The final years of a life is a time for reflection and over the last 4 years, since my pop suffered a massive stroke, I have had plenty of opportunity to think about his life.

The Anzac Spirit was forged on the battlefields of WW1. It was the reputation the Anzacs had for loyalty, mateship and skill on the battlefield but it was also mixed with cheekiness, mischief, and good humour. The generation that fought in WW1 have all passed and the generation that fought in WW2 is passing too. As the last of the WW2 diggers age and die, I wonder if the Anzac Spirit still has a place in today’s society. A society that feels a world away from the one my grandparents grew up in.

My pop, Jack Wade, was a commando, a “digger”, a scrappy nugget of a man with a cheeky sense of humour and the respect of everyone he ever met. He was the embodiment of the Anzac Spirit. He fought in WW2 in New Guinea in the 2nd/3rd Commando Squadron in the Australian Army. All the men volunteered to join knowing they might not come home, because that’s what you did back then.

We weren’t told a lot about this time or what it was like when he returned home, as it wasn’t discussed much.

Happy Birthday little Blog!

A year ago this week, I started something I never believed I was capable of doing. I started compiling all my thoughts about my pregnancy, birth and first year with Wade and I started blogging. My aim was to speak to other families who may be in a similar position to us and tell them everything. I wanted to show that something can rip your world apart and make you question everything you know and still be positive and joyous. That in the midst of swirling, competing emotions, a path emerges and while it may not be the path you intended to take, there’s no reason why you can’t plant a few bluebells and enjoy the walk.

It was important to me that I didn’t just end up preaching to the choir about Down syndrome too. I wanted to speak to people who had no experience of Down syndrome and show them that life is not like they imagine it is from the outdated stereotypes they may be familiar with. I wanted to throw the door open on my world so that no one had to creep around the issue or feel uncomfortable about talking about Down syndrome. I wanted people to think about and forget about Down syndrome at the same time when they thought of us.

Wade “on the phone”

I remember the week I launched the blog. I had decided to write my whole pregnancy story in 6 parts and publish them together before telling anyone about it. Two days after posting the first few posts, I received my first comment…. from a complete stranger on the other side of the world before anyone knew I was even writing this thing! It blew my mind that in the endless sea of blog posts on the Internet, someone had stumbled across little old me!

Reclaiming Possibility

March 21 is World Down Syndrome Day and, like over 2 million people and counting, I had the pleasure of seeing the beautiful “Dear Future Mom” video released to celebrate the day. It made me bawl like a baby to see the pride and unmistakable joy that exists between mother and child.

I love this video for its simple message to future mums. To celebrate this day, I have a message for future parents too. Mine is about embracing possibility and making the most of a situation but unlike the succinct brevity that was employed by the video, I have continued in my “why use 5 words when 50 will do” fashion!

What do we Lose if we “Cure” Down Syndrome?

Yesterday morning I heard something that really made my blood boil for the first time since Wade was born. I got into the car to hear a local celebrity scientist on the radio discussing an item from the day’s news. Recent research has developed a technique for potentially shutting down the extra chromosome in the cells of a person with Down syndrome. The short term implication is the potential to develop new gene therapies to treat some of the health issues more commonly associated with DS such as hypothyroidism, leukaemia and early onset Alzheimer’s. The wider implication is that this technique may be used to ultimately turn off DS in the embryonic stage effectively “curing” it.

It wasn’t this in itself that made me angry, it was the description this scientist gave of Down syndrome. She called it a “devastating” condition. There was joy in her voice as she described how this discovery had the potential to eradicate DS all together. And I thought to myself…this is my son they are talking about here. Maybe I’m just an over protective mother ready to leap to the defence of my child (well, I was when I fired off my aggrieved text message into the station!!) but it also had me thinking about what is really at stake here.

Part 5. Thoughts that got me through

My pregnancy was definitely a roller coaster of emotions where I questioned my resolve, my decisions and my sanity every time I got a new test result. But right from the beginning, all the way through till now, I had reasons why I didn’t want to test for Down Syndrome. This post is not about what I think everyone should do, it’s about what I did and how it helped me get through the turmoil of prenatal diagnosis. Even though there were ups and downs during those 9 months, by the time Wade was born, I was ready and happy and waiting there with open arms to meet him whether he had DS or not and if any of my thought processes help other women in similar circumstances then its achieved its purpose.

From the outset, I want to say that I am not fundamentally opposed to abortion. Everybody’s circumstances are different but I feel that we have a huge responsibility to think about it carefully and get as much information as possible. For me, it was important to “go there” in my mind on both sides of the argument. For me, considering all of my options and really thinking about it meant the right decision for me was so much clearer. As I contemplated my options, the right path to take kept leaping out at me. I chose to keep my baby and these are the reasons why.

Part 4. The new normal

During my pregnancy, I was working as a waiter at Marios’, a cafe in Fitzroy. The cafe has been there for 27 years and has many regular customers who have been going there for years. It’s the kind of place where you need to get along with the customers as well as the staff and owners, as they are as much a part of the furniture. It’s one of the things that I loved about the job. I had returned to hospitality after 5 years away from the industry and I was really enjoying it. I had worked at Marios from 2001 to 2005 when I left to go and find a career. I’d had a quarter-life crisis and after racking up 10 years as a waiter, I decided I needed to do something meaningful with my life. Whatever I did, it had to be noble and worthy. That is something that has always been important to me. I have always shied away from the corporate world of money, ambition and power. I have never wanted to be defined by my job.

I left Marios’ to join the police force. (Bad choice if you don’t like issues of ambition, power and being defined by your job!!) After 2.5 years of stress, heartache and anxiety which was mainly due to the size of my IN tray of paperwork and less to do with the horrors out on the street, I resigned. It wasn’t for me. Yes, I was earning slightly more money than waiting tables but I was drowning in paperwork and the job was consuming every waking hour of mind and most of the sleeping ones too. I couldn’t find a reason to stay so I left.

Then I worked as a sub contractor for a company installing eftpos machines. The money was fantastic, I worked for a great company but again, the work was taking over my life. I worked long hours on the road only to come home and spend a lot of the night preparing for the next day and doing all my own paperwork. After that job ended, I discovered that I crave the simple life.