If you aren’t familiar with Daisy and her gorgeous son, Oscar’s story regarding congenital heart disease, you need to know that Precious Hearts have been an absolute god-send to Daisy and her family.
On the night, Daisy was asked to speak about Oscar’s journey and she’s kindly given me permission to post the speech.
I’m a blogger, a business owner, twin mum, mum of three, wife, cleaner, maid, personal chef and sometimes I even get to be me.
And I’m a heart mum.
It’s been three weeks since our last episode, and just over three years since our first diagnosis.
My husband Pal and I live in Young NSW – with our three children. Rory – a feisty, fiery, redheaded, stubborn 4 year old girl. I have no idea where she gets it from. Fraser and Oscar are three year old identical twin boys.
All you really need to know about them is that they are three year old twin boys. Enough said.
In June of 2010, an 11 days old Oscar was diagnosed with a coarcation of the aorta and transferred via helicopter from The Canberra Hospital to Westmead Children’s hospital.
He underwent a coarcation repair and was further diagnosed with a biscuspid aortic valve.
6 days later, he was transferred back to The Canberra Hospital via plane.
Funnily enough, at three years old, his list of favourite things consists of three items:
He should add “driving Mum crazy” to that list, but I’m pretty sure he thinks that activity is actually his goal in life, rather than a simple joy.
Three years ago, we weren’t sure he would survive – and if he survived, would he ever thrive.
Now we’re wondering why we were ever concerned. A more alive, healthy, thriving child you will not find.
He lives life like every moment matters. And I guess for him, it does.
Oscar has been dubbed by his doctors: “The Healthiest Sick Kid” they’ve ever seen.
In our family, he’s known as The Evil Twin.
Well, not really. But he may as well have.
Oscar is the kid you find standing on the mantel piece, next to the TV, with a trail of destruction below him and a look on his face that suggest he’s well within his rights to be standing over a metre above the world, perfectly poised to push the TV onto his minions standing below.
I often call him my Extremist.
Nothing by done by halves in Oscar’s world.
This is true for Oscar medically as well.
When he’s well, he’s very, very well. when he’s ill, he commits fully.
It was two years ago, after Oscar’s second procedure – a balloon angioplasty – that we found a calico bag hanging on the end of the cot.
I asked the nurse: “Um, excuse me, what’s this?”
“Oh, that’s just a little care package some of the mums put together for the heart ward.”
Precious Hearts is SO much more than that to our family.
I’m sure to many families.
I am in awe of the work Precious Hearts does. AMAZED by Traci’s commitment, and often comforted simply to know they are there.
On days when I am struggling to get dressed and make my own coffee, I’m pretty sure Traci has already changed somebody’s life. Probably twice over.
Let’s face it – when there is someone in the world who read s a blog post named: “An Open Letter to ABC Adventure Buggy Company, Phil and Ted Green, BrandStyle and anyone else that may be interested” and not only laughs when she reads:
“I wonder how good a WWF wrtestler I would be – if matched with an 8kg one year old in a caged event” but also takes the call to action seriously.
And figures out a way to provide a family with a pram that they would never have been able to afford – thanks to regular medical appointments for their child that require up to four hours travel each way.
Precious the Pram gave me freedom I hadn’t known since the twins had come home. It’s not easy getting around with three children born within 17 months, and by providing our family with something that might seem so simple – a pram – our lives were changed.
Not in the least for having our eyes opened to the love and generosity that people we had never met, but those paths had crossed ours at just the right moment.
What I never realized about congenital heart disease could fill a book.
What I know now, I’m sure, is not even the tip of the iceberg.
But here our family is, in this world of CHD – trying to make sense of who, what, when, where and how.
And standing firm and easy to find in this world of blood pressures and oxygen stats is Precious Hearts.
A rainbow beacon, a shelter from the storm, an organization run by amazing people, doing amazing things for amazing children – and families – every day.