Today, I'm going to introduce you to my social media team.
My social media accounts are run by my Mum and my Aunt.
Often, Mum will upload a photo on facebook.
My aunt then shares the photo and the comment on my website and my instagram page. Sometimes, a little extra information gets added to the website posts.
My website posts are often shared on my instagram account. My aunt does that.
Sometimes, we share a video. It gets uploaded to you tube and shared by my aunt.
We wanted to tell you this, because sometimes, I say really positive things about Mum and we don't want people to think she's writing that about herself.
(I'm the cheeky one in the family!)
We want to tell you this, because sometimes, people with kids like me might wonder how Mum finds the time. It's hard to be a mum of a child with cerebral palsy, who can't talk and who has had cancer. We don't want other Mums to wonder why they can't find the time to write blog posts, too. We need them to know I have a team of people... and that we think those other mums are doing a great job!
Sometimes, the longer posts take a month or so to write. They often come from something that we found hard or challenging.. Or maybe we want to raise some understanding and help people know what's been going on. Mum and my aunt might talk about it for a while... The idea might sit there and grow over time. They might wonder about whether they can even share the post... or, what the best way to say it is.
Some of the posts seem to write themselves! Sometimes, my aunt wakes up and the post is in her head... and the words just pour out!
Some posts sit there for long enough that they lose relevance and we delete them.
When we share a simple post, my aunt just shares it. When we are doing a more serious or emotional post, Mum always reads it before we share it.
We've been so lucky, in that most people have always supported us. The people who don't like my story tend to move away.
We're lucky because we have not had trolls or people making loud, negative comments. We do watch out for these. If we find any, we will delete any nasty comments and block anyone who causes trouble. My life is hard enough; we don't need to deal with trolls. So far, though... we have been very lucky!
Sometimes, on my social media accounts, Mum might answer and comment. Sometimes, it might be my aunt. They are pretty good at talking to each other, but sometimes they forget to pass on things.
Sometimes, they don't get to all the notifications on my social media accounts, though they do try to answer most comments. (If they miss something, let them know.)
With accepting new friends, they generally accept people who have mutual friends or who have messaged and introduced themselves.
We really respect the positive words that people embrace me with. We appreciate the words of support and we love that people recognise how important my milestones are. We like how many people feel they know me and how they treat me almost as a member of their family. We like that people we don't know say hi, and use my name, when we go out and about. We especially like it when kids do that. It makes us smile.
This website and my facebook page all started back when I was being diagnosed with cancer. My aunt asked people to post jokes on Mum's page... and they did!
It was a practical joke, and an attempt to give Mum and Dad something to smile about, while they waited for my cancer diagnosis. No one knew what they were facing, back then.
Our friends posted so many jokes and funny pictures that I got my own facebook page! And then, this website was started. Back then, the posts were very, very simple.
Over time, more and more pages have been added to my website, in the hope we may help, inspire and encourage other families while also helping others to understand my disabilities and illnesses.
We only shared posts during my chemotherapy days, at first. We shared a very simple explanation of the day, in my words. We chose to do that, because we could use simpler words and not be as graphic with what was going on. Also, it was nice to give a non-verbal boy some words of his own.
We always chose to lean to the positive. We didn't want pity and we didn't want people feeling sad about me. We wanted hope and fun and adventure. We still do!
When the cancer treatments finished, people were still interested, so we kept posting.
Sometimes, it's hard to share and post. Sometimes, people tell Mum they know all about her and all about me. Sometimes, people forget we don't know them as much as they know us, and they wonder why we didn't talk to them... They forget to introduce themselves!
But, so long as we get positive feedback from families like ours and from our beautiful village of supporters, we will continue to share my story. We will continue to try to raise awareness and understanding. We will continue to fundraise for local charities (over $34,000 so far!).
My mum and my aunt are a pretty determined pair, and they make a good team. They are backed by some strong, silent supporters at home. I'm lucky; I've got amazing people around me.
Thanks for following me, and for commenting and liking my photos and sharing our posts.
We would not be here without you.
#raisingawareness #cerebralpalsy #hepatoblastoma #corticalvisionimpairment
You can find me here: @lovedexter3 on twitter and instagram and Love Dexter on facebook.
Carol wrote this one :)
**No wonder I am a little bit cheeky! Look at these two!
Mum was Crying in the Ball Pit
What a Dollar means to Dexter
When Wheelchair Stops Being a Dirty Word
About the Sisters
Dexter's 2013
Dexter's First Month
Dexter's Vision
Dexter's Cerebral Palsy
Dexter's Cancer
Who is Dexter?
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