The last thing I ever imagined myself doing was creating a blog (ok, maybe becoming a nun is probably a touch less likely).
I have no journalism training, I am not a trained writer (this will quickly become clear to you all) and I never thought I had much of interest to say but recently writing has become an outlet. This is my new therapy. I have no idea if anyone will ever read this and to be honest I am ok if no one ever does. This is mainly for me. It is my outlet for all my thoughts as I try to figure out this world.
Firstly I have to decide out how I introduce myself these days... my ‘blurb’ used to be simple but these days it has become a lot more complicated.
I guess I’ll start with the basics. My name is Rachael. I am a woman in my mid-30s, married to a beautiful man called Jonathan. Jonny is my unicorn. He would like a manlier description, I’m sure, but I mean it in the nicest way. He is the perfect male specimen. Manly, friendly, emotionally intelligent, thoughtful and caring, happy to hang with my girlfriends, great with kids and even gets along with my parents. He is a male unicorn and there is something quite magical about him. Sorry, ladies but he is taken – he’s all mine.
We have an exceptionally wonderful family and we could not love them more. My parents are my heroes, my idols and my best friends. My in-laws are divine. They love us, support us and encourage us even in the darkest times.
We have a seriously brilliant group of friends. All unique, some crazy, kind, genuine, supportive, fun and kind. We are lucky people.
Jonny and I are both police officers and we met in recruit college. He was my instructor. He taught me self-defence, firearms and was happy to spray me with capsicum spray which was a part of our training. I remember that day clearly. The pain was excruciating and when Jonny came to check on me I told him “f**k off!”. That must have been when I cast my love net over him. But it was, quite appropriately, all above board as he waited patiently until I graduated to ask me out.
But my other most important descriptor is that I am Mackenzie’s mother.
Mackenzie was born on 11 March 2017 and she was pure perfection. How we made something so cute and adorable I will never know.
Mackenzie was our rainbow baby. We miscarried a baby before getting pregnant with Kenzie. We spent the whole pregnancy terrified that something would go wrong again. When she was born we breathed a sigh of relief. She was beautiful and perfect. We finally dropped our guard thinking that she was in our arms, we had created a life, she was safe, we get to keep her. But at 10 weeks old Mackenzie was diagnosed with Spinal Muscular Atrophy (SMA) type one. And our world fell apart.
SMA is a 'rare' neuromuscular disorder characterized by loss of motor neurons and progressive muscle wasting, and at its most severe, often leading to death. It is the child version of motor neuron disease brought to media attention through the ice bucket challenge.
In Mackenzie's case we were told it would be extreme, rapid and terminal. We would lose her and there was nothing we or anyone else could do. There is no cure. I felt as if a part of me died that day.
The average age that a baby with SMA type one will live to be is 8 months old. We got 7 months and 11 days. On Sunday the 22 October 2017 Mackenzie passed away as she lay between Jonny and I in her hospital bed in the ICU at Sydney Children’s Hospital. Our world lost its brightness that day. We broke.
Since then we have been trying to figure out our world. Why did this happen? What does this mean? Who are we now? How do we move forward?
One thing that has been helping me is writing. So yet another mummy blog is created.
My aim here is to write honestly about my family’s journey, how it felt for us to find out our baby had a genetic disorder, our pain of learning we would lose our perfect baby, how we coped during the months when we woke up to see her face each day knowing it could be our last day with her, what it felt like to lose her at last, and the grief that has filled our world since that day.
In this blog, I want to talk briefly about how we are moving forward, how we are relating to with people now that we are ‘the couple that lost their child’, how to cope with grief and how we are now tackling an IVF journey to have Mackenzie’s siblings.
I want to be honest and real about this very dark side to life. I don’t want to gloss over the hard parts because that would disrespect Mackenzie. I refuse to put a shimmer of perfection over everything like as things are often portrayed online. However, I also want to talk about the positives we have found within the darkness, how we decided to create change in Mackenzie’s name, and do what we can to make sure this doesn’t happen to other families, and find a way to be grateful for the time we had with her.
Despite the fact that losing Mackenzie has engulfed every aspect of our lives, I also want to write about just being a Mum. Sometimes I just want to be an everyday normal Mum, sharing my lessons/experiences and thoughts on pregnancy, birth and being a Mum. I want to write about being Mackenzie’s Mum not just about the tragedy of losing her.
I hope my writings help someone other than me. This is the very real and honest story of my life. It is my life of love.