It's been a year since I have written anything on here. Blame it on lack of material I guess which is most definitely a blessing. When your kid has gone through two open heart surgeries and the best you can come up with to write about is her obsession with the Trolls movie soundtrack then you know you are leading a pretty good life (except for having to listen to the Trolls soundtrack on repeat EVERY.... SINGLE.... DAY...).
I guess the reason that I am writing this now is because it's Riley's birthday on Monday and she is turning three. Over the past month Facebook has been bringing up Facebook memories (you know the ones where it shows you embarrassing photos of yourself from years ago that you would rather not see again; maybe it's a reminder service to delete them); and it keeps going back to three years just before Riley was born. I remember being nervous, unsure and just holding onto my faith believing that God has got this. That everything would be okay. That Riley wouldn't just make it through but she would be kicking goals along the way.
So it's nice from this vantage point to see how far she has come; all the things we were told to expect between her second and her third surgery never really came to fruition. She has gotten to live a pretty normal life aside from the odd Cardiologist appointment here or there which I suspect she thinks everyone does as a part of their everyday lives. Go to your dentist, Go to your Doctor, Go to your cardiologist. Yep that seems completely normal.
However this year we are in for something slightly new. It's almost like we have been in a holding pattern where we just get to enjoy this block of time free from stress, anxiety or concern about Riley's health. But just on the horizon is the next surgery; it won't happen this year unless her condition deteriorates suddenly but it is planned to happen almost a year from today. The other night I was getting Riley changed into her pyjama's for bed and as I was doing that; I noticed her scar (which I never even realise is there these days). I pointed to it and said "That's your special scar" to which she replied "Why is it special?". Even though we have pointed it out a number of times to her and she almost always delivers an unfazed response; this time I dug a little deeper than usual at her question. "Because you got this scar from when the doctors fixed your heart" and her reply was "Why did the doctors fix my heart?". "Because you have a special heart that needed fixing; so now you have a special scar to show for it". That was the end of the conversation and she resumed running around the room with boundless energy as we tried our hardest to get her into bed. But it is beginning to dawn on Jess and I that the next part isn't really that far away; it always seemed so far away but now it is finally creeping up.
We never really talked about the third surgery before with her because it didn't seem necessary yet plus she has no recollection of the other ones for us to give her some kind of context for what's to come. But this year is the time when we have to start having those kinds of talks with her to prepare her.
Not that she will ever really understand the weight of what we are communicating to her though. It's a hard thing to explain to a three year old that you have to go through complicated life saving surgery and begin to wrap your head around your mortality when currently you are just trying to wrap your head around potty training (much success in that department though!).
So I think we can all agree that is not going to be fun but thankfully there will be some pretty cool stuff on the horizon for our family as well. This year we are doing something else new; we are moving to Mackay. We will miss the Isa but we are excited for our new home (our friends and family in Mount Isa are considerably less excited about it but they get it); we are looking forward to new challenges, our new Church and getting to meet new people. What it also opens up to us is connection in an area that we don't really have here. When we came back three years ago to Mount Isa; Riley really was a one of a kind. There wasn't any other Heart Kids to speak of; nobody who had a Hypoplastic Right or Left heart anywhere to be seen in this city. So Riley became a kind of anomaly. Any trip to the Doctors became a teaching example for the medical student off-sider who had never encountered somebody like her. They would ask the student to listen to her heart and get them to guess what is wrong to which the student would always give a puzzled look upon hearing it and say "It sounds funny". We were never bothered by them doing that but it reminded us that Riley was something special here.
So another aspect of our next destination that has peaked our interest is that there is a Heart Kids group in Mackay. This means there is the potential for her to meet other kids like her but also for Jess and I to build relationship with people who may have been through similar challenges. Learn from them but also be a support if need be. It'll be nice to have the potential for community in this regard.
But before the surgery and the big talks that entails, the move which means packing up our house and saying goodbye to family and friends; we are going to take it easy. Enjoy our remaining time in the Isa and celebrate our daughters third birthday. She has come so far, grown so much and we love her to bits.
Happy Birthday Riley you little champion!!
I guess the reason that I am writing this now is because it's Riley's birthday on Monday and she is turning three. Over the past month Facebook has been bringing up Facebook memories (you know the ones where it shows you embarrassing photos of yourself from years ago that you would rather not see again; maybe it's a reminder service to delete them); and it keeps going back to three years just before Riley was born. I remember being nervous, unsure and just holding onto my faith believing that God has got this. That everything would be okay. That Riley wouldn't just make it through but she would be kicking goals along the way.
So it's nice from this vantage point to see how far she has come; all the things we were told to expect between her second and her third surgery never really came to fruition. She has gotten to live a pretty normal life aside from the odd Cardiologist appointment here or there which I suspect she thinks everyone does as a part of their everyday lives. Go to your dentist, Go to your Doctor, Go to your cardiologist. Yep that seems completely normal.
However this year we are in for something slightly new. It's almost like we have been in a holding pattern where we just get to enjoy this block of time free from stress, anxiety or concern about Riley's health. But just on the horizon is the next surgery; it won't happen this year unless her condition deteriorates suddenly but it is planned to happen almost a year from today. The other night I was getting Riley changed into her pyjama's for bed and as I was doing that; I noticed her scar (which I never even realise is there these days). I pointed to it and said "That's your special scar" to which she replied "Why is it special?". Even though we have pointed it out a number of times to her and she almost always delivers an unfazed response; this time I dug a little deeper than usual at her question. "Because you got this scar from when the doctors fixed your heart" and her reply was "Why did the doctors fix my heart?". "Because you have a special heart that needed fixing; so now you have a special scar to show for it". That was the end of the conversation and she resumed running around the room with boundless energy as we tried our hardest to get her into bed. But it is beginning to dawn on Jess and I that the next part isn't really that far away; it always seemed so far away but now it is finally creeping up.We never really talked about the third surgery before with her because it didn't seem necessary yet plus she has no recollection of the other ones for us to give her some kind of context for what's to come. But this year is the time when we have to start having those kinds of talks with her to prepare her.
Not that she will ever really understand the weight of what we are communicating to her though. It's a hard thing to explain to a three year old that you have to go through complicated life saving surgery and begin to wrap your head around your mortality when currently you are just trying to wrap your head around potty training (much success in that department though!).
So I think we can all agree that is not going to be fun but thankfully there will be some pretty cool stuff on the horizon for our family as well. This year we are doing something else new; we are moving to Mackay. We will miss the Isa but we are excited for our new home (our friends and family in Mount Isa are considerably less excited about it but they get it); we are looking forward to new challenges, our new Church and getting to meet new people. What it also opens up to us is connection in an area that we don't really have here. When we came back three years ago to Mount Isa; Riley really was a one of a kind. There wasn't any other Heart Kids to speak of; nobody who had a Hypoplastic Right or Left heart anywhere to be seen in this city. So Riley became a kind of anomaly. Any trip to the Doctors became a teaching example for the medical student off-sider who had never encountered somebody like her. They would ask the student to listen to her heart and get them to guess what is wrong to which the student would always give a puzzled look upon hearing it and say "It sounds funny". We were never bothered by them doing that but it reminded us that Riley was something special here. 
So another aspect of our next destination that has peaked our interest is that there is a Heart Kids group in Mackay. This means there is the potential for her to meet other kids like her but also for Jess and I to build relationship with people who may have been through similar challenges. Learn from them but also be a support if need be. It'll be nice to have the potential for community in this regard.But before the surgery and the big talks that entails, the move which means packing up our house and saying goodbye to family and friends; we are going to take it easy. Enjoy our remaining time in the Isa and celebrate our daughters third birthday. She has come so far, grown so much and we love her to bits.
Happy Birthday Riley you little champion!!
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