‘There it is again, this time I definitely noticed it.’
I stared intently into his eyes, desperately trying to remember if it was something I’d seen before.
‘I’m being silly’, I told myself and picked him up again, his warm face resting up against mine.
I took a breath.
It was a relief, this time around. My first baby had been a shock… all of those sleepless nights, the loss of independence, the feelings of massive failure. But this, this was different. Finally things were feeling right.
It was a few weeks later I was looking adoringly into those same eyes when I saw it again. It was no longer a surprise as I was noticing it all the time now. My eyes darted up to the nurse who was busily checking his measurements, hoping she hadn’t seen it. She hadn’t.
“You have one very happy and healthy little boy here.” She had said a moment earlier, as she pulled the measuring tape around his tiny little body.
Then, she got to his eyes.
I watched her carefully. The gentle smile slowly left her face as she leaned into him closer. My heart sank. I was right to be worried.
“Do you see that? That.. that’s not normal...”
And just like that, in an instant I knew it was true. My perfect little baby boy had been born not so perfect after all. His body had let him down and I had no idea how to fix it.
The next few months would turn into a blur. A lot of waiting and fear, trying to think positive, and then a heavy feeling of fear would set in again. It was exhausting.
One particular night I was up late researching the words ‘flickering eye movement’, the results were terrifying. It was a word called Nystagmus, and if I was to believe what Google had to say, we may as well give up hope altogether.
‘People with Nystagmus will be ridiculed bullied and abused throughout their entire life. It is common for people with Nystagmus to be unable to drive, unable to play sport, work options will be limited.’
In that moment I quietly pleaded to please not allow this thing called Nystagmus be connected to my precious little man. He didn’t deserve that.
After waiting a further two months, unable to do anything but worry, we finally met the specialist. A direct but kind man, with a warm smile for the children who visited his office.
“Your son has Nystagmus.”
And there it was.
All those weeks of waiting and begging for a different outcome, and there it was. Nystagmus.
We cried for him, we cried for us, we grieved a life that he would never have.
We drove home, lay on our bed with him stretched out between us and watched him smiling up at the light coming through the window. Blissfully unaware of the anguish that surrounded him. We cried some more.
Surprisingly, through the tears came something different.
The sadness and fear started shifting as we realised that along with this diagnosis there was the hope of something new.
We now understood a challenge that had been dealt to our little boy. A difficult, physical barrier to a life we thought he was entitled to.
Or, once we thought about it differently... this challenge could shape him in a way we never could have imagined. He would literally be viewing the world in a different way, who knew what he would be capable of with that unique perspective.
We sure as hell didn’t, and who were we to let one singular word ‘Nystagmus’ define him, or dictate the life he would live.
That day our baby received a diagnosis, as well as his freedom. We made a decision that we would never hold him back and we would take his lead on the life he would live.
My not so perfect baby is the perfect fit for our family as he continues to teach us every day.
There is no longer fear, instead replaced by determination, by pride and by hope.
Diana Fisk is a mother of two children and a film producer based in Melbourne, Victoria.
Diana has recently launched a crowdfunding campaign to share the story of the journey in understanding her son’s vision condition and an incredible woman named Jess Gallagher who Diana found to teach her son that he gets to make up his own mind what he’s capable of doing.
Jess Gallagher is the only Australian athlete who has won in both the winter and summer Olympics. You can find her speeding down mountains on her skis or racing around the velodrome in training, all in which she does whilst having the label of ‘legally blind’ attached to her name.
Support the story of Diana finding Jess and the moment Diana’s son will get to meet Jess for the first time. It will be an inspiring story that will assist a lot of families during transition of understanding their child’s impairment or differing conditions in the early stages.
For more information and to support the project please visit: