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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?