We were hoping we might hit 100,000 hits, but we fell a little bit short.
Yesterday, this webpage had about 99,300 hits.
That's pretty amazing for a little boy's webpage.
We're pretty confident that many of the hits are 'repeat offenders' -
People who are following Dexter's journey...
People who come back every few days, just to check up on him.
Everyone wants their children to be loved and we are no different to that,
so to those people, we say thank you.
Sometimes, we worry about Dexter and how much people know about him.
We worry that our whole lives are being played out on this webpage
and on social media.
We worry that we might be doing the wrong thing.
If Dexter didn't have cerebral palsy... this webpage wouldn't exist.
So, how did it all begin?
We didn't plan for Dexter's story to be this big.
It started on facebook. Our family knew Dexter had 'a mass which needed to be treated' and he was in Randwick Children's Hospital, so doctors could determine what the mass actually was. That was an absolutely awful time.
There was nothing we could do to help Lenice and Andrew.
We just had to wait and worry and worry and wait. We hadn't gone public with anything. We were silently hoping there would be good news and they would be sent home... but then, it was Dexter, and we figured we were facing cancer.
We thought Lenice and Andrew needed a smile, so we 'played a trick on them' on facebook. We posted a comment, saying we were trying to fill Lenice's facebook page with jokes... dodgy jokes, Dad jokes, funny stuff. We asked people to join in and post jokes with us... and they did! Lenice's facebook page was smashed with jokes and it was clear that, with Dexter's upcoming cancer journey, he would need his own page... his own place where jokes and fun things could be shared.
And so, Dexter joined facebook.
And, people were amazing.
Whenever Dexter was in hospital, there would be jokes and pictures
and little hellos posted every day. And then, when he was home, his facebook page would go a little quieter... until he headed back to hospital again,
and everyone shared more photos.
Lenice and Andrew were smiling... in the children's oncology ward...
beside Dexter's hospital bed, while he was undergoing treatment for his hepatoblastoma (liver cancer) - Lenice and Andrew were smiling.
The jokes were working.
The jokes also set the tone for Dexter's facebook page and blog. It took on a fun, hopeful, positive approach and this has been maintained. Sometimes, pages for children like Dexter become places filled with prayer and bible quotes.
Dexter's Pokky, Len, no doubt prays for Dexter. He grew up in a strong Catholic family and his belief is still strong. And yet, he has never pushed prayers on to Dexter. He is quiet and respectful and we admire him for that.
It's hard for us to believe that someone decided Dexter needed to endure
all he has suffered and what he is yet to suffer. It's hard for us to believe that we were chosen because we are strong enough. We're no stronger than anyone else, we've just been tested much more than most. We've learned to be strong.
And so, we've kept a cheeky, happy tone.
Dexter was born nine weeks early. For many premmie kids, they get bigger and stronger and they can almost leave their premature story behind them. This is Charlotte. She was four weeks early, but is reaching all milestones and has put on the weight she struggled to gain in her first weeks. Dexter's premature birth is linked to his brain damage. His brain damage is linked to his vision impairment and his cerebral palsy. His cerebral palsy is the reason this blog and webpage have been maintained. |
It makes speech very difficult. His cerebral palsy is incredibly frustrating
and frequently heartbreaking. It's unfair and cruel.
Lenice and Andrew's house is filled with expensive equipment... huge, bulky pieces of equipment. Dexter needs all of it... he'd benefit from having even more.
Dexter's cerebral palsy is never far from their thoughts. It will never go away.
And so, we maintain this webpage... and hope we are doing the right thing.
We sometimes worry about identity theft and we sometimes worry about people using Dexter's photos and story for their own personal gain.
But, the positives remain stronger than the worries.
When Dexter first began to use his walker on the side footpath,
people stared openly, but quietly, as they walked by.
Now, people are passing Dexter and saying hello... and using his name.
People have come up to Dexter in public places, to say hello.
They have recognised him, having long ago fallen in love with his determination
and strength and are delighted at the chance to finally meet him.
They always comment on his eyelashes.
Before they knew about Dexter, would they have had the confidence to approach a boy with cerebral palsy... a boy who often drools, even though he is two and a half? Would they have had the confidence to approach a boy who's mouth is often open, in what we call his 'cerebral palsy face'? Or, would they have simply stared
and wondered what was wrong with that kid?
The stares are hard to take. We feel them... they no longer hurt as much,
but they make us feel very protective of Dexter
and they make us a little frustrated and resentful.
The unexpected approach from a stranger, who suddenly starts to talk to Dexter
is a little over-whelming and we are learning not to be too shy.
These little visits make us feel happy, to know Dexter is being seen as a little boy, not someone with cerebral palsy. They give us hope for his future.
living with cerebral palsy. They've gone up and said hello.
They've mentioned Dexter and his cerebral palsy.
They've no doubt made other families smile...
knowing for just a moment, they were not being stared at and wondered about....
they were being greeted and chatted to.
If we can raise awareness and acceptance of people living with cerebral palsy,
if we can show that people with cerebral palsy
are cheeky and clever and determined...
if we can help people look beyond disabilities and see the people like Dexter...
if we can do that, this webpage is definitely worth it.
If we can raise awareness and understanding of Dexter and his cerebral palsy
within his own community, we will be paving a smoother path for his future.
Dexter will always get more than his share of stares.
His sister will also have to live with these stares.
But, if people know him.... know his story and understand his challenges...
if they know how much he works at doing the 'little things'...
they will learn to see Dexter...
and not the kid who looks funny and talks and walks 'funny'.
(Because we are going to work our guts out
to get him on his feet and using his voice!)
If we can make Dexter's future easier, this webpage is worth it!
which is extremely important to his development... equipment which funding was denied for... equipment we would have had to do without, or buy ourselves.
If we had not been sharing Dexter's story, we would not have won that money. Dexter would not be as strong as he is today.
Through the local news, Dexter's story was shared and a beautiful man purchased Dexter's walker. Something we'd only hoped to own was suddenly ours.
It's hard to explain how incredible it felt to own a walker and a standing frame.
Dexter was first in his local paper after he was diagnosed with cancer.
The first time you are in the newspaper is fun and exciting.
Now, we do actually contact the newspaper when we want
to publicly thank someone for helping Dexter.
They know Lenice is a bit camera shy, so they don't push her to be in photos.
(Andrew is usually working when interviews are done.)
The Kiama Independent know Dexter well, and support us each time was ask them to publish something. We've also been supported by the Illawarra Mercury
and WIN News. We have approached them once or twice and they have helped us out. The local radio station, i98FM, also promoted Melissa's fundraiser.
This support means a lot to us.
Our only hope is that people do not get bored with always seeing Dexter.
If we could choose between being known by the local media
and having Dexter running around, yelling and chasing birds...
we'd choose the running and yelling one.
But, we have our Dexter... and he has cerebral palsy, and because we are using this website and social media to raise awareness and acceptance of kids with cerebral palsy (and vision impairments and childhood cancer) our story reaches the media.
We've had fundraisers and, in all honesty, we sometimes feel weird about taking money. We wonder whether people are wondering why we should be getting the money... when we already got a lot of money. Sometimes, we worry about sitting in a cafe and having a coffee... wondering whether people will judge us and think
we are using Dexter's fundraising money on fun things for ourselves.
We promise... every cent given to Dexter is spent on Dexter.
Cerebral palsy is expensive... well, not really.
If we were happy to leave Dexter on the floor all day, every day,
with no hope for the future... cerebral palsy would be free.
But, we want the best for Dexter - and wanting him to have the chance to be his best requires a lot of time and effort.... and money.
(For example - Dexter's starting to show interest in feeding himself.... to do so,
he needs good spoons... we got a set for him and they cost about $50.)
So now, when people offer us money for Dexter, we accept it.
We accept it for Dexter and we appreciate it.
Without this webpage and his facebook page, many people would not know about Dexter and they would not be interested in his story. They would not be proud of his efforts and they would not want to help him.
We have met so many wonderful, genuine people through Dexter.
He really is an amazing little boy, with the longest, thickest eyelashes
and more determination and cheekiness than we could ever have imagined.
To everyone who has followed his story...
Thank you
Thank you for seeing Dexter for who he is...
A happy, cheeky little kid.
Return to Blog
Read about
Read how we're teaching Dexter to see
Who is Dexter?
Read our fun post: Chasing the Media
Dexter's operation - set for January 2014