A Boringly Awesome Two Year Old

Today is Riley's 2nd Birthday; that means we have had two years of this awesome little girl in our lives. It also marks at least a year since I have written in this blog; I lost a bit of motivation I guess due to a couple of reasons. One is that I get the opportunity to speak in my Church every other week and she provides me with an endless amount of material to work from; I am always sharing some crazy or funny thing she has done (I am sure when she is a teenager one day there will be plenty of eye rolling and groans from Riley every time I say "My daughter did the funniest thing the other day"). I guess because of that; the idea of sitting down and writing down Riley's experience just feels a bit like I am reheating leftovers because I have already shared so much about her. Though I do realise that not everybody goes to Isa Community Church on a Sunday so that's not a great excuse really (However I do realise my Instagram and Facebook is almost like a shrine to my daughters; I have turned into one of those parents. My apologies).

The other reason I haven't really updated the blog is because Riley is kind of boring. Though she is not a boring kid; she is actually quite a funny little thing. She loves singing when she is at home which can alternate between beautiful renditions of the ABC song or Twinkle Twinkle to just straight up screeching and declaring that was singing no matter how much we disagree. Or the way she is endlessly fascinated with her little sister Maya (who is doing really well by the way) and always wants to be playing with her or providing commentary to us on what Maya is doing. Or the fact that she refers to "Let it Go" from Frozen as "Dancing Song" even though she just sits there doing absolutely nothing fixated on the TV when it comes on.

Basically what I am trying to say is there is nothing boring about my daughter except her condition. I remember two years ago when we would be obsessed with her oxygen sats, whether she is doing well enough to get out of the PICU and to be honest I can't think of any other examples at the moment because they feel like such a faint memory.

Just a few weeks ago we were discussing with the Cardiac Care Unit in Brisbane about Riley coming up for her yearly development clinic where they assess how on track she is in her development. Usually we would be speaking with Qld Health Travel about booking tickets except that the Cardiac Care Unit let us know they changed their procedures. Now they get you to fill in a questionnaire and if they feel your child is struggling or needing assistance then they fly you out for the clinic; otherwise they will just reassess in a few years. The moment we heard that; Jess and I both looked at each other and were like "Well I guess Riley isn't going to the clinic then" Because there are no unexpected symptoms and no big delays in speech or movement; She is boring in the most awesome way.

Even when we get to know people; somewhere along the way they may see the scar peeking out or hear about Riley's six months in hospital and get a little curious as to what that is all about. So we let them know all about the journey she has been on.
Every time the reaction we seem to get is "Really?? She seems fine" or "You really can't tell".

Riley is no longer defined by her condition. It is still there obviously but it's not all there is to her. At one point her condition felt all consuming but it is something that we forget about to be honest except when she gets her daily dose of aspirin. There are so many wonderful things about her; this is just a small part of her. And if you are wondering the question we always seem to get eventually "So does that mean that Riley is done with surgeries since she is doing so well". The answer is still no. The doctors have spoken with us and are projecting that she will need her final open heart surgery in 2018. So yes we are two years removed from all the battles Riley had to fight but we are also two years away from the next one. Plus there are no guarantees that she won't need further surgeries after that one.

But that's a battle for another time. We are just enjoying our little girl; her personality which is evolving every day, her little quirks, the funny things she does and above all her laughter. We love how generous she is with her laughter when she is at home or shoots you a big bright smile. Two years ago this was something we were praying for and so were all of you (even some of you who don't believe in the power of prayer but you did it anyway; that really meant a lot to us). We are just incredibly thankful for every good thing that has happened since (and the arrival of of Maya who although six months old is starting to get her own little fiesty personality too) and how God seems to have really taken care of our family.

I will one day write another blog post about the journey but for now we are just going to continue to enjoy our Boringly Awesome Two Year old...