Three Years On

September marks 3 years since we received Louis’ diagnosis. It always brings up so many emotions, thinking back to our time in Sydney Children’s ICU. In all honesty, July through to September carries a weight with them every year. The dates and days from that time have memories and emotions woven permanently into them. They bring with them reminders of some of the darkest moments I have experienced. 

However, each year the reaction and emotions that these memories conjure change ever so slightly. The pain is still felt, the lump in my throat still comes up, the pounding of my chest and anxiety of the unknown is there. But there is a difference about it that I can’t quite explain. It may be the fact that each year these “anniversary” dates that pass by are actually another reminder of how far Louis has come. How much he has achieved that he was essentially told he wouldn’t. How far we have come, as parents and as a couple. 

Three years ago if you had asked me what I expected three years to be in the future, I would’ve told you I hoped we had Louis still and maybe another child. I had hoped that he was smiling and laughing and living a life he enjoyed. But deep down three years ago, I didn’t expect that. I thought my future would be so much more dark that I dared not let myself think about it for too long. 

So whilst the memories of three years ago are painful. They are also a testament to where we are now and how proud I am of my little boy and my little family. 

Alongside the ever growing light that is attached to these dark reminders is now the brightest light. 

Now July brings with it the happiness of Isaiah’s birth. Growing our family was also a dream. Something we both hoped and longed for. But given the genetic nature of Louis’ condition it was never going to be an easy journey. To have Isaiah, in my arms, a sibling for Louis and unaffected by CDG fills my heart. 

The other day, Isaiah was upset as he was getting tired and ready for a sleep. He’s still so young and needs hands on settling to go to sleep. I needed a couple of minutes before I started trying to get him to sleep, so laid him next to Louis, both looking at each other. I often do this as Isaiah stares at Louis and it distracts him but it also helps them to know each other and recognise each other. Louis always seems to reach his arm or hand out to Isaiah when he’s close by. This time, their arms ended up wrapped around each other. Within minutes, Isaiah had stopped crying and calmed and then, they both nodded off to sleep together. I stood there looking at them and felt completely overwhelmed with love. These two boys, two brothers, my boys, may not be able to to talk to each other, but they already have formed a connection, a bond, that seems stronger than I ever expected. 

That moment right there, three years ago, I dreamt of that. 

That moment, along with so many others we have experienced since Isaiah was born will slowly become what we think of first when we are reminded of July to September in years to come.

Sure the darker times will still be remembered and still have a presence. But soon enough the light will outshine the dark.