Collective disbelief.
Last night a little boy died.
I’d known he was ill for a little over a week.
I didn’t know him or his family personally but they were a part of our small Australian community
of people with immune deficiency
and smaller still,
parents of children with the disorder.
When things get bad, everyone feels it.
Differently from the little man’s family, of course
but it has been a collective suck in of breath while we all hoped and waited
and when the news came through,
a collective devastation
and disbelief spread throughout the group.
Some more than others because they knew the family -
had spent long infusion days with them.
We all held our children tightly last night,
knowing that it could have easily been one of us.
We are told that a simple infection could become life threatening all the time but
when a little boy loses the fight it makes everything real.
We lit a candle at home to honour him
but it’s not enough.
It never is.
My heart is heavy for his family -
his mum and dad especially.
It’s not right
or fair.
I can’t say that I know what they are going through
because each and every person who dances with death deals with it differently
but I understand.
I don’t know why
but I can’t stop thinking about them.
I have my theories though.
The questions that come up have me feeling angry and displaced.
Why can’t doctors treat all children with immune deficiency aggressively,
why take on the wait and see approach, when it seems so…
inappropriate.
In Australia, it seems that many in the medical world do not take immune deficiency seriously
or they don’t have time nor the inclination to educate themselves.
They think it’s okay to wait things out
but it’s not.
Things can change quickly.
Losing a little life is not okay.
People are not expendable
just because it’s hard to understand the nature of a quirky immune system.
It will never be the same for the little boy’s family,
their lives different now.
I wonder if anything will change in the medical arena
or if his star will fade with the morning of a new day.
Forgotten to those who it really should have mattered most.
Fly free, little man.
Soul searching.
We’ve been laying low these school holidays.
Or I have, anyway.
I’ve been watching old episodes of ER and eating all of the wrong things.
I’ve been making and doing things with the kids.
I’ve been fighting with the teenage boy,
which causes rifts within the family at large.
They say parenting little ones is hard.
Give me a newborn or a toddler any day.
Teenagers are hard.
Damn hard.
It’s not that it’s been too hot or that we couldn’t go out if we wanted to.
I guess I’m in some sort of awful slump.
Again.
It’s the same with blogging, really.
I come to the computer and sit for a while trying to think of how to word the things that I want to say
but it seems too boring or self pitying
and I think; ‘what’s the point’?
It has got alot to do with the whole hospital fiasco but there’s a whole lot more to it as well.
I’m sure whatever I put down in words will be viewed poorly by someone
and I struggle with that.
I do.
I joke around and tell people I am a reformed people pleaser.
The really sad thing is,
I’m not reformed at all
and worrying about how people see me is exhausting at best
and soul destroying at worst.
Sadder still is that I can’t seem to stop that behaviour.
It is ingrained into my very being – always seeking the approval of others.
I know all of the tools to work through it but those horrible thoughts of self doubt always find their way in
and then I loathe myself all the more.
Ugh, don’t you all hate that revolving door thing?
Me too.
People are excited about the way blogging is going,
bubbling with new ideas,
new opportunities.
Feeling they finally have a voice in this medium
but I feel an unrest inside me.
I used to worry that I couldn’t keep up with all the new bloggers.
I used to get myself all knotted up inside
but now I just don’t care anymore.
All too often now other (newer) bloggers are quick to tell me that I’m doing it wrong.
I read post after post how to be a better blogger,
how to be the best social networker.
Not authentic enough,
revealing too much,
posts being too long, too short, not contraversial enough.
Too many reviews,
not enough reviews.
Too many words in a post,
not enough photos.
WordPress, blogger, typepad (is typepad even a platform anymore?)
We pick on each other’s grammar and spelling.
We cry poor when we feel someone has copied our ideas,
even though we must know that in real life, sometimes people think alike.
That’s how we come to have groups and committees and gatherings
and we balk at people who are original or non conformist.
We put cryptic messages up on facebook and twitter about how things cheese us off.
It’s guerilla warfare in blogland.
It seems as though the whole thing has become like a competition
in an all girls high school.
We attack each other’s way of writing and documenting things,
sometimes stealthily, in that chinese whispered scenario:
‘she never joins in, she never comments, she’s a little strange. Let’s push her out’
Sometimes it’s with our claws out, hacking and scratching our way to where ever it is we think we need to be to be important.
Trying to vie for more hits, more votes, more views.
Aren’t you all tired?
I know I am.
I sit and wonder at some of the things that I read,
wonder why we pick on each other so much.
Why can’t we all accept that each of us writes differently?
Like there are no two people in the world who are exactly the same,
writing or blogging (however you choose to see yourself) is an individual thing.
Perhaps that is a hippyish, floaty way of seeing things
but there it is;
why can’t we all just blog in harmony
and accept and appreciate that each person sees their world with a different point of view.
I know -
it will never happen because that is just the way things are.
I accept that
but I still wish for it.
I’ve been taking alot of photos these last few days.
They help me to clear my mind and find perspective
and this is my favourite:
For me, blogging should be like this.
Life should be like this -
sometimes joyous, sometimes beautiful, a little sad, sometimes whimsical.
Breathtaking, significant, everyday, ordinary.
It’s whatever you see that’s right
about all of this.
Summer project: making sorbet.
While the biggies were off doing their own thing Noah, Ivy and I decided to try our hand at making sorbet.
We’d watched it being made on a cooking program before Christmas and thought we’d like to give it a go.
We were bashing around town this morning and saw that they had a half price special on food processors (ours had died months before)
and that decided it: today was the day.
It’s really really easy, inexpensive (aside from our having to purchase a new blender)
fun and super delicious.
So,
here is our gluten and lactose free
banana, mango and lime sorbet.
With photos -
of course.
You will need:
A blender.
A frozen carton of rice milk.
2 mangoes
2 limes
2 bananas
icing sugar (optional).
You could really use any fruit in this recipe.
Ivy wants to try strawberries next time.
Squeeze the juice of two limes
Cut up the mango and the banana into manageable pieces.
Here is the tricky part
and the messiest part
and the “oh my goodness be careful with that sharp knife” part :
cut the frozen carton of rice milk in half.
Remove carton.
I found a serrated knife worked best.
I also found a nice strong teenage boy to help me, when I failed to be able to do it.
Don’t do this:
Even if it is extremely messy, it is better if you then chunk up the frozen milk.
It blends better.
Trust me.
Chuck one half into the blender and blend it (for want of a better word)
pulverise it – there, that’s a good descriptive word.
Add the lime juice as you do.
Throw in the mango and banana and the rest of the frozen milk
Blend it to within an inch of its life.
Taste.
Add icing sugar if it’s too tart for you (or for the six year old boy, who is has a sweet tooth).
We ended up adding two tablespoons, which made it sweet but still had some zest to it.
Place it in an air tight container and freeze.
Or if you can’t wait eat it straight up (a little mushy but still very refreshing).
There you have it: easy peasy rice milk sorbet.
Yum.
Phobia.
When she was little and she had not been through so much
Ivy was fearless.
She loved and enjoyed many things,
especially the beach.
There was something about the salt spray and the feeling of the sand that made us all feel just a little bit wild
and free
but especially the girl.
She would push her chin to the sky and take on the world
and then stuff happened.
For a while there she couldn’t go in the ocean -
attached to a pump, with a port and then a hickman’s line
and she would sit on the sand and watch as the others splashed in the waves
and wished for the day that she could go swimming.
Then one day she could
but when we took her to the beach she was overwhelmingly and shockingly afraid.
Afraid of the sand,
afraid of the water -
just afraid
and whether it is true fear
or a way for her to deflect all that life has thrown her -
Ivy no longer loves the beach.
In fact, I would say it is bordering on a phobia of sorts.
Now, all of my children have had fears.
Noah still dislikes bugs of any kind and was scared of the vacuum cleaner for a while
and Lily had a fear of being eaten by an alligator, when she was four
but they’ve been fleeting or
I have been able to talk to them about what is frightening them.
This is different.
Last week, she agreed to going
and for the first time in a long time, she walked on the sand
and built a sand castle with her dad -
it was definitely progress
but when it came to the water part, well,
it was brief
and altogether painful.
Like it has been every single time since she declared her fear.
For months we have been trying a slow introduction
and gotten not very far at all -
onto the grassy hill by the sand,
to the very edge of the path that spat us out onto the beach,
onto the beach itself, so long as she could be carried -
and so on this day I took her down to the waves,
told her we were going to stand in the water.
Before we even got there, she was begging me to go back.
Screaming that she was scared, so scared and that she needed to go back to the towels.
Right now!
I stood with her
and tried to talk to her about what was frightening her
but all she could do was scream
and twist into me
and beg.
It was wholly awful.
Dave came down then
and my mum
and together we formed a tight little crescent of protection.
I asked Ivy that we stay in the water (barely ankle deep) for five minutes without crying.
We did her breathing excercises
and tried everything we knew to show the girl that it was okay -
she was safe
and her hysterical tears turned to quiet sobs and heaves of reluctance
and then resignation.
By the time the five minutes were up we were both exhausted.
I felt cruel.
I’m sure the many spectators on the beach that late afternoon thought I was
and I’m not sure I’ve changed anything at all by expecting her to confront her fears.
There doesn’t seem to be an easy way to do this,
which is a shame because the ocean has been such an integral part of our family’s healing
but now it’s just a stressful place to be for the girl and I.
I’m not sure what to try next
or if I should try at all
because the suggestion of the beach today has brought out the tears early this morning.
The tears and all of the same issues.
She’s just plain scared.
I miss that fearless Ivy-girl sometimes.
I miss her confidence and her sass.
I wish that things could be different for the girl who lives in her place now.
Almost every day.
Did you have any childhood phobias, or have kids with fears that went to the extreme ?
How did you work through them?
































