If there were no internet
and no blog
life for me would be very insular.
One of the main reasons I started to write online was because of my isolation
and yet isolation seems to be the order of the day.
There have been a lot of blog posts flicking around lately on
writing about your children online
and how disclosing information is not in their best interests -
which might be true.
There have been bloggers who condemn the very things that I write about -
talking about Ivy’s illness online, well, that cheeses some people off, apparently.
In fact, as far as they are concerned,
no parent ever should reach out into the online world
looking for answers and like minded people who are going through a similar thing.
Apparently that’s wrong.
It’s okay for them to write about their own conditions online
because that’s their choice.
They can garner as much strength from their online community because they are talking about themselves
but a mother trying to get through life with a chronically ill child -
because writing about the child, however discreet it may be,
is taking away their right to privacy.
Which might also be true.
Not that I’ve ever been ‘discreet’ about my kids
no ‘only taking photos of the children from the shoulders down’ (well, sometimes, in the name of art)
no trying to hide their identity.
I mean, honestly
some of the people who harp on the most about these kinds of things
then turn around and do a double page spread in a national newspaper,
a family photo sprawled across the feature, with a link to their blog and the suburb they reside in
in widely read magazines
or I see them on national television talking about their blog and their children.
So, it’s okay to have a photo of your kids in newspapers and magazines
and on the TV
but not on the internet?
That’s bizarre to me -
especially when media today has taken a large turn towards being online.
They talk about sick weirdoes but
sick weidoes are everywhere,
not just on the internet.
Some of the most well known pedophiles
people who you should be able to trust.
It’s just not as simple as switching off your computer and never posting about your children anywhere online
There are sick people everywhere.
Aside from that – it’s really not that hard to track down a person, work out who a person is.
Even if you don’t photograph your kids’ faces
or if you use aliases -
you don’t need a lot of information.
Look at all of those bloggers who have been scrutinised lately
when average, every day people do a little research and find their earnings and their debt amount
and then splash that around in forums and such.
I’m sure that is not freely disclosed in the scratchings of a post
and yet someone, somewhere thought to look.
Look at child abductions and pedophilia rings
before the internet was a thing.
Evil has always existed throughout time,
so why are we suddenly blaming ‘Mummy bloggers’ for making things worse.
We sign permission for our kids to be photographed at school, for goodness sake.
When we fill in paperwork for day care or enrolment at school
when we fill in forms at the paediatrician’s office
that is willingly giving away information.
That is giving away your so called privacy.
The minute we open up our lives to a person we expose ourselves and our families to another human being,
who will most probably go and tell another family member,
or a friend in the playground,
or a colleague
and soon everyone knows your story.
Unless you are prepared to keep your children home and never go out into the world at large
there is no privacy.
For the record,
I don’t want to expose my kids to anything that will harm them
any more than the next person.
I ask permission to write about my older kids
and have recently sought the same from Ivy and from Noah,
although I’m not too sure if they understand what they are agreeing to yet,
they know I have a blog and that I like to write about them.
My family (including David) have been largely supportive (and proud) of my of my six year blogging habit
and how it has helped to connect with other mothers who are going through similar things
and how it has helped me to come out of my shell again after losing my baby
and how it has opened up a world of (all be it small) philanthropy
and helping other people
and how that gives me a feeling of worth.
Darn it, I’ve even made some real life friends out of it.
If every single person
who ever wrote something about their child on the internet
suddenly removed all trace of their thoughts
would the privacy rate go up?
Would bad things stop happening?
I doubt it.
Human beings are social creatures
and sooner or later someone would say something to another person
and the cycle of disclosure would begin again.
So, will I continue to write about my kids online?
Will I continue to photograph my children’s faces and ‘splash’ them all over Facebook.
because without the connection of other humans
(and for some of us that connection is mostly through the internet due to proximity, uncertainty, life skills and availability)
what is the point of existing at all?
Why have life when you cannot share it -
your triumphs (my children)
your low points -
if it doesn’t matter to anyone else but you
then does it really matter at all.
My children are a large part of my life
and their tales are mine too.
there would be no Circus
there would be nothing beyond a 40 year old woman living out in the sticks somewhere.
People are so intertwined,
how can we divulge of ourselves without including the lives of others.
That would make no sense at all.
I’m not sure where this blog is going right now
I’m actually not sure where this post is going
but I’m typing it out hoping to find direction.
After six years of blogging there are days when I look through its archives
and bore myself.
Everything seems to cycle in sameness year after year.
My blogging mojo is traditionally low about now
but this year it’s almost gone -
there are things happening in our family,
that I’ve been asked not to write about
and that is simultaneously easy and hard at the same time.
This blog has become a place to sift through all of my emotions
and to not be allowed that is difficult.
I’m not used to processing things without ‘talking’ them through.
but I have to consider the person who requested it.
That’s not to say I’m shutting down
or anything else.
It just means that I need to find my new groove.
I think that I am going to start on a new photography project I’ve found
and post it here at the end of each week, as a start.
As for the rest,
I’m sure it will work itself out.
For now, I wanted to share some of our Summer.
Ivy has had four good weeks of health,
although she is starting to throw off warning signs that her body is working hard now,
we have taken advantage of our time
and spent it in the water mostly.
I purchased an inexpensive pool and watched as both Ivy and Noah have found their confidence
amongst the long lanky legs of the teenagers making violent whirlpools
as they circle their fishbowl
and relished in the laughter
We’ve been to the beach -
the very same that in the year previously
Ivy would not even let the waves lap at her toes.
This time we climbed in and out of caves
and walked up to lookouts
and waded into the water without a worry at all
and yesterday we found ourselves at a gorgeous little river shack
with good friends
who are really more like family.
We tried new things -
whooshing along at high speed
and tubing on outstretched rope,
cutting through the man made waves of the boat that was pulling them
and Ivy and Noah blossomed.
All of the kids did.
Last year was such a lonely experience for me.
I spent the majority of it in the hospital with the girl
or holed up at home dealing with the emotions that go along with this life.
I don’t really want to do that this year,
although I’m not blinded by my want
and I am realistic in the knowledge that not much has changed for Ivy
and therefore for the rest of us
I’d love to do more,
and yesterday a good start.
I didn’t do a lot .
I sat in a banana chair
and mostly watched and listened to everything that went on around me
but it was a start
and by the end of the day
I felt the wonderful effects of sunshine and friendship.
I’d forgotten how much I like to be outside.
I’d forgotten how much I enjoy people
but it was just what I needed -
with all of its new experiences.
The thing about having a child with immune deficiency or any chronic, all consuming illness is that you never know;
you never really feel certain about anything at all
and planning something, even a week in the future, is like taking a giant leap of faith
but you have to.
We have to.
Yesterday, when the doctors were angry and huffy with me
and I them,
one of them said:
“with a kid like Ivy, you can’t live like normal, you can’t plan. Everyone should always be on high alert, just in case.”
but that’s not a way to live at all now, is it?
Waiting in the shadows for the bad to come -
always living with that fear.
It’s certainly not the way I want my other children to live.
I want them to make plans,
go to things,
be with friends
and I want that for Ivy too.
She deserves ‘normal’ as much as she can get it.
It’s an impossible mentality to have when at least one of us needs to work.
In a job like David’s you need to commit to being there
else you’ll lose your position
and therefore our whole family’s income.
You can’t stop the world while you wait for things to get better.
You just have to work around it.
One of her favourite things to do is twirl in the hallway.
Since she was little
she’s chased the dust fairies as they danced on the sunbeams
and spun and spun until she’s breathless.
Sometimes it’s in her PJs
and other times it’s when she has a new tutu to try out.
I shall always remember these days.
In years to come
when she outgrows the simple joy of spinning.
My tiny hallway dancer.
Playing along here today.