Living with Mackenzie (part one)
The days following Mackenzie’s diagnosis seemed to us like a living nightmare. I stopped eating and essentially stopped speaking. All I wanted to do was hold Kenzie close, feed her, touch her, tend to her, talk to her.
Jonny went the opposite way. He got comfort from eating and found it cathartic to talk to people. He paced up and down on the balcony talking to whoever needed to be spoken to. He did what I couldn’t, and I think I did what he couldn’t.
I spent hours staring at Mackenzie in complete disbelief. At times, I felt myself looking at her with such determined concentration until I realized that, subconsciously, I was trying to swap with her. I knew that I would take her place in an instant if I could.
In those early days, amongst the tears, Jonny turned to me and said, “We have been given the worst hurdle a couple can face. We have to do this together. We can’t let this break us. “This would become our motto. Whenever we felt it needed to be said we would turn to each other and just say the word “together”.
Both sets of parents rushed to Sydney to be with us. I cannot describe the pain of a household with six parents filled with grief over their children, terrified of the pain that they feared their children would have to go through, feeling helpless. For both sets of our parents, their pain was intensified as they were scared and worried for their children as well as for their grandchild. The suffering in that house was palpable.
The way our family rallied around us cannot be expressed in words. They have been everything we needed in every second of every day. They have never failed us, especially our parents. As we put our arms around Kenzie and cared for her, our parents put their arms around us. They fed us, cared for us, cleaned house for us and gave us their love. Most importantly, they gave Kenzie love. Everything we learnt about being parents we learnt from them. Better people you will not find.
None of us knew how to comprehend what was happening. And at first, we didn’t even believe it. We said to each other, “This can’t be happening.” Each of us hoped to wake up from this nightmare. We would go to sleep each night only to wake up and remember each morning. In one moment, we’d get lost in laughter, playing with Kenzie, loving her smile, only to remember in the next. At all times, it seemed that there was someone breaking. Someone was always breaking down and crying as we took it in turns to feel the pain.
Slowly we started to pull ourselves out of our sad fog. And as we did, we realized we needed to be something else, something more for Kenzie. She needed more from us. Early on, we realized that whilst we were in intense emotional pain, Mackenzie wasn’t. She was so young (only 10 weeks old at the time of her diagnosis). We knew that she would never be old enough to know that she was sick, she would never feel sadness and pain, she would only know our love and happiness. We knew that, for her, we needed to live.
Our first act was to learn everything we could about SMA and how long we would have her, and how best to care for her. We were also given the impossible task of deciding whether or not we wanted to put her on a clinical trial for a drug called Spinraza (also known as Nusinersen).
At this time, I am choosing not to go into the specifics of what Spinraza might offer or our decision. Whilst I am sharing our world there are memories, moments and decisions I will still keep to myself. Going on the clinical trial is such a personal choice. It is one that no-one can ever really know how they would answer until forced to make such a decision with ALL the information, not just the theoretical good that it might do. We know that it is by no means a cure and will only, ultimately, delay the inevitable. Therefore, decisions about quality of life come in to play. We know families who have chosen to be on it and those who, like us, decided against it. There is no ‘right’ decision and each decision is an individual one for everyone to make, although we know in our hearts that this was the right decision for Mackenzie.
We had multiple appointments at Sydney Children’s Hospital with our wonderful neurologist, Dr Michelle Farrar. We met physiotherapists, social workers, psychologists, nutritionists, occupational therapists and more. We had a large team to support us. Whilst this was comforting, it was also a reminder of the seriousness of our situation.
Learning about such a cruel disease was heartbreaking to say the least. We often broke down, screamed (at home) and begged each other to make the pain stop. However, we made it a rule to never break down in front of Kenzie. She was such a smart little girl, and very aware of everything around her. All she knew was what she could read in our faces. We knew she would pick up on our sadness if we allowed ourselves to show it around her.
We learnt that Mackenzie showed early signs of the symptoms of SMA. We were told that the average age that SMA type one babies pass away is at eight months. We were told that it was likely to be months for her not years. We were also told that some SMA babies had a slow decline, while others developed a cold which then caused a fast decline in hospital, and still others might pass away with no notice. We had to be prepared for any of those scenarios; although how could we prepare for the possibility that one day we might wake up and look in her bassinet only to find that she had passed away in the night.
In the process of learning about SMA, our eyes were opened to a whole new world. A terrifying, unfair, brutal world which didn’t make any sense at all. We learnt that although SMA is the number one genetic killer in babies under two it was largely unknown amongst society and even health care professionals. We also learnt that there are so many other genetic conditions such as cystic fibrosis and Fragile X Syndrome that kill or severely impact our children. Too many to count. I feel it has to stop.
We learnt about the world of genetics, recessive disorders, pre-implantation genetic diagnosis, carrier testing and more. It was hard not to hate the world and everything in it. Because, despite everything we learned, nothing could change either Mackenzie’s diagnosis or her future. Everyday felt like an emotional balancing act. We were living life on a knife’s edge, worried that one wrong move or thought would send us slipping deeper into the darkness of depression.
This is where friends and family saved us, especially in those early days, that and the love of a beautiful baby girl.