We had been dreading this long weekend. Not for the extra day off, not for the winter wine festival, not for the chance to visit a friend in Sydney... we were dreading this long weekend because it's not been good to us since Dexter was born.
Two years ago, Dexter was still living in Sydney. He was still in his plastic cage of a bed... still needing support to get through the days. He was a month old, which meant we had been parents for a month. It should have been a happy time, but it wasn't. It was scary.
The June long weekend of 2011, we found out about Dexter's brain damage - which is why he has cerebral palsy and his vision impairment.
The June long weekend of 2012, we knew Dexter had cancer. It had been confirmed, and we spent the weekend wondering whether it would be the more treatable version, or the nastier version. (We got lucky on that one!)
So, we were afraid about this long weekend... afraid for what it would bring.
On Thursday, Dexter was a little 'off' and we didn't do most of his exercise. He had a cold. His sister gets a sniffle and its gone the next day...Dexter's body can't do that. The chemotherapy treatments have taken this strength away. He's got nothing to fight off any sicknesses.
On Friday, he was worse... This is the difficult time... How sick is he, really? Should we be worried? How long do we hold off? Are we becoming the parents who complain as soon as their child gets the slightest thing? Or, is Dexter really sick, like hospital sick?
We talk over the phone, Dad at work and Mum hating having to make the final decision. On Friday, Mum knew. An early lunch was eaten - last hospital stay, Lenice went without food for around 12 hours!
And, Dexter got worse...
And so... back to hospital we went.
And the waiting game began. Luckily, being young, Dexter does get through triage very quickly. We were given a bed in Resus. in the emergency department, so we were relatively comfortable.... Dexter wasn't so comfortable.
His temperature had hit 39 degrees.. and he's usually a 'cool' boy. He was breathing up and his heart was fluttering. They put him on minimal flow oxygen, just to help him out. Dexter was not impressed.
Phone calls are made and messages are sent - "Dexter's in hospital, again'.
Those conversations never get easier - and they are even harder when there is no diagnosis. We have to stay strong for everyone else, even when we are way past exhaustion.
Dexter had another cannula put into his arm. The very word is almost enough to make us cry. His poor veins are ruined... smashed... torn up and shriveled... They have had so many needles put into them! The last few times Dexter has had cannulas put in, needles have been put into him, then twisted and turned around - inside his tiny arm, in the search for a vein! He screams... really - he screams and it breaks our hearts.
Charlottes hears him. She worries, too.
Some ventolin was tried... a spacer was tried... nothing seemed to be really helping. Dexter actually held his breath when given the ventolin through a spacer... he hated his face being covered and hated the sounds. He is becoming more fearful and less trusting of hospitals, doctors, nurses and the word 'medicine'.
Who could blame him, really?
His blood tests were good... all test results were back and clear... There was no diagnosis yet. We had been in hospital for around five hours.
We got lucky and coffees were brought over to us by beautiful staff members. Sandwiches and juice are offered... Dexter is cared for and Charlotte is spoiled.
Finally, after almost 7 hours Dexter is strapped into a car seat which is strapped on to an ambulance trolley and we are ambulanced off to another hospital... where familiar nurses will be both excited and disappointed to see us.
Dexter needs to know you're there...
he wants to to hold on to you.
Hospital stays are harder now...
There's Charlotte, too and its not fair for her to be stuck in the hospital.
It's hard... the worry, the waiting...
A few hours later and we are sent from Emergency to the ward. Still no diagnosis - a couple of maybes... bronchiolitis and pneumonia. He has been on minimal oxygen - just to try to give his little body a break, but he is being weaned off it now.
Even worse, there is a beautiful day just outside the window and we will probably miss most of the weekend.