The reason for her long delay?

The IVIG?

Denied.

Even though she said Ivy would have no problems getting the Intragam it has been denied by the Australian Blood Bank.

An appeal is taking place as I type and the paed says it’s not over

but it is.

My little girl is going to have a life of hospital admissions and illness, some chronic, some life threatening, because some guy in an ivory tower decided she could survive without this medication.

I know I said no more negative

but

man, this bites.

to see the world with innocence and vigor.

New negativity.

A jaded, bitter, watchful me seeks out the sickly and squeezes between them, hoping to filter away any airborne disease.

Inwardly, I laugh at my naivity.

Feeling defiant and wrong for being out amongst the people, for socialising, when we are supposed to be in ‘enforced isolation’.

We are only buying food.

The cupboards bare for fear of exposing anyone to anything.

Shopping these days is a luxury.

Wall watcher, wishing away the days to a time when  there is sunshine and the house will not hold us prisoner anymore.

Doctor chaser.

Too much of a nurse and not enough of a mother.

Wordless, worry.

Does she look a bit off to you?

When will the next infection hit and will we get through it without a hospital admission?

Dark thoughts of failure and exhaustion.

Doctors names as large and complicated as their egos.

Weeks when our trips to the doctor’s are our only outing.

Medication

cannulation

 putting all our eggs in the infusion basket.

Frustration

Lonliness.

I read something that said we’ll get used to this, that we will learn to take it in our stride. It won’t be as stressful as it is now.

I don’t know.

Will I ever get used to this new normal?

Ivy is sick. 

 Almost hospital worthy.

We went to the paed who said she was sick but ’stable’.

He  offered her IV antibiotics to clear up the obvious infection but it wasn’t emergent and with six other children to look after and a husband who has no more leave left, I declined.

He had nothing else for her,

No new answers and no word from the immunologist, despite leaving several messages and emails.

She is missing.

So I did the only thing I could.

I cried (silly I know, I’m usually much better at keeping my emotions to myself)

and then I left.

He called last night.

Just to see how the girl was holding out and, I guess, to see how I was too

but

still no word from the immunologist

and so we are living in limbo.

Written as part of MamaBlogga’s GWP.

My brother was a drug addict by the time he was thirteen.

It started with marajuana and escalated from there. His drug of choice was heroin but he was a poly drug binger and would take anything he could get his hands on.

Life was sometimes scary with a brother on drugs.

There was a time when I loved him. I was always scared of him but I loved him too and I think he loved me. If anyone teased me at school, he was my protector, even though he was two years younger than I and much smaller.

He was also the worst offender.

That’s how I know he loved me.

Sometimes, I thought I hated him. I didn’t though, I just hated what his drug use was doing to him, my mum, my family.

He was pretty violent, my brother. He hit me and threatened me with knives and threw things at me. He choked my mother until she passed out.

The police came often.

The worst time was at Christmas and my mother was at work.

They came with the dogs and searched the house. They pulled all the ornaments off the tree, pulled them apart, while my sister and I looked on, huddled together on the lounge.

They had no warrant and they had no right to be there because we were home alone until Mum finished up.

The whole neighbourhood came out to watch and nobody questioned them as they ripped our home apart looking for drugs because, by then, my brother  was a supplier.

They didn’t find anything.

He stole and manipulated  and hurt everyone who loved him, especially my mum.

Once he was ‘dumped’ on our lawn after overdosing, by some of his so called ‘mates’ in the early morning hours. My mother hauled him inside, kept him conscious, showered him, made him vomit up the crap he had taken.

She loved him but it was killing her, watching her boy self destruct.

He died when he was 17.

A doctor prescribed him a strong pain killer. He took every single one of the sixty tablets, crushed them, mixed them with water, drew it up into a syringe and injected it into his vein.

He was dead by morning.

It was declared an accident but to this day, I’m not sure.

He had been an addict for such a long time, he knew what he was doing.

My sister’s drug use was much quieter.

It effected her schooling and she didn’t finish year nine but it was in her adult life that it caused the most damage.

She brought two children into the world and chose drugs over them.

I will never understand.

My kids know all about their uncle and they have seen first hand the effects drugs have on families.

I still worry though, especially with the big boy. My sister watched as my mother tried to piece her life back together after Andrew died and yet she turned around and did the same thing. 

They say the ability to have addictive tendencies is genetic.

I only hope I’ve taught them well, on the cusp of high school and adolescence and the turbulence of self discovery.

Drugs ruin everything.

Do you one day wake up and think I have nothing left to say that hasn’t been said?

What do you do, if that happens?

Do you walk away?

Do you wait until something fabulous or funny happens, so that there is anything other than real life to write about

because, really, I haven’t got anything.

You can only blog about being a shut in with a sick kid for so long before it gets boring.

Weekly Winners is  brought to you by my garden and my children and of course Sarcastic Mom.

All of the wattle is out.

The roses are budding.

Nothing but a boa.

What do you say, when the kids go to bed I wear this outfit?

Winter dandelion blowers

Almost gone.

The seeds of change.

Gorgeous girls.

Old  Blue.

Ollie’s girl.

David said the paed would never admit to forgetting to organise the IVIG.

He said he would play the blame game.

He said he would say he wasn’t able to contact the immunologist or the ward or the nurses or someone who needed to be contacted to get the infusion sorted.

You know, instead of being honest and saying he forgot.

David was right.

What David didn’t count on was that he would hide behind his pitbulls receptionists and have one of them call with the news that there would be no IVIG this week.

I was so cross.

Truth be told, I could still scream.

After the phone call I went outside and I pruned the potato vine.

When I say pruned, I mean that I hacked the living bejaysus out of it and imagined that  it was the doctor’s head.

Then

I got my little saw and chopped off a gazillion dead branches and pruned back the climbing rose to within an inch of it’s prickly life, imagining stuffing one of the sharper sticks up into the ENT doctor’s nose and scraping any adenoid tissue I could find and then poking at his tonsils for a while.

and I felt a little better

and I decided that I would keep very very calm.

However, tonight I am still fuming, so I thought I might try to look at the good things…

Ivy is still in pretty good spirits and aside from having goopy ears and a slight temp, is quite well and happy.

Noah sat on my lap this afternoon and said “Love me, I am your guinea pig” and then proceeded to make guinea pig noises.

“weeep weeeeeeep weeeeeeeeeeeeeeep”!

My fence can be seen again and I think the bottle brush that the potato vine has slowly been killing may live to see another Spring.

Oh and while I did all of that pruning, I plotted a double murder and now I have space in the garden to hide the evidence.

See?

Every cloud has a silver lining.

PS, sorry for the two posts in one day

PPS, I’m not really sorry just cross and a little crazy.

(Not, not not, not bl**dy NOT)

At least;

now she has matching discharging ears, instead of just the one.

Yippee!

Oh and her snoring?

Worse than ever.

In an attempt to stop the discharge before it runs away from us (pardon the pun) we contacted the ENT doctor’s rooms, only to find them shut.

De ja vu anyone?

I am so tired of chasing these doctors, trying to have them make good on their plans for Ivy.

I think the IVIG is not going to happen this week. I feel it in my bones. It may have something to do with the fact that the paed, having promised to call to organise things, has not come good.

Typical.

Part of me just wants to wave the white flag.

I give up!

I know I’m annoying. I know it. I hate it as much as you and I surrender.

I can’t do it anymore…

and then I look at her and I know how great she can be

so I start the doctor chase again.

Ugh.

I hate myself for it.

From my table.

Our table has eight seats and one is always empty.

He’s missing from our lives.

He should be there, amongst the noise and the blur of colour, hands in with the others, hands in the mess of fish and chips.

Hands greasy, mouth full of fat- laden -weekend comfort food.

He’s missing from the weekend activities, the ball throwing, the friendly banter of comfortable siblings, the ebb and the flow of everyday life.

He’s missing from the conversations with grandparents enquiring about what each child is up to.

He never rates a mention.

Not anymore.

There are no progress photos of him lining the hallway, no portraits of a little guy with fuzzy blonde hair and an impish grin amongst the freckles, a painted masterpiece in the background.

There will be no preschool graduation for him and no proud, tear stained eyes as he reaches the important milestones.

He is missing from the constant move forward in this thing that we call life.

He will always be William, the boy who hardly was.

Frozen in time, a baby of five days.

There will always be that missing person.

There will always be an empty chair.

It has been an enormous week here and to celebrate it I have my best photos to show you as part of the Weekly Winners meme. If you go on over to Sarcastic Mom’s you can have a peek at the other participants too.

Hospitals are ever moving places of humanity at its best and its worst.

The all seeing safe - t - view.

Keeping busy waiting for surgery.

Two friends, Bok Bok and Red Blood Cell, wait for her return.

Little wooden sculptures within the hospital.

On Saturday we decided to go out to the markets where there were free rides for the children.

Oh merry - go - round.

swinging chairs.

A new bath do.

Beautiful bath boy.

Kiss me.

Bath buddies

“So, I’ll see you at four”.

He seemed unimpressed when all of the lackey doctors fell about laughing and I knew I would pay for it the next day.

We didn’t get discharge until 2.

The ENT doctor came in earlier and advised that she stay away from  all social activities for five days.

When I told him she had none, that if we went to the supermarket, she came home with pneumonia, his response was;

“Well, that won’t happen anymore, I’ve cured her”.

Ahhh, yes.

He has a very healthy ego.

I’m sure he said the exact same thing the last time he operated on her.

but

in a bold move of unnerving positivity, I put both Noah and Ivy’s name down for preschool next year.

Next week Ivy goes in for her first infusion of IVIG

and so my plan for normality begins.