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Time away.

 

 

We went away.

We had to.

Exhausted, we basically packed up the kids and once Ivy was given the all clear, we left.

We’re back now and life is rolling on,

back early because the girl is unwell and needed the hospital.

I can’t even begin to process everything yet but can I just say that immune deficiency is such a crappy disease and I wouldn’t wish it on my worst enemy.

We’d thought about going far away, travelling by plane to a place we had never been before

but in the end I was too scared to go anywhere where I was unsure about health care.

I don’t like that feeling but I’m glad I listened to it now.

It was very strange travelling without AJ.

It was emptier somehow, quieter.

There was no bargaining for sushi every day,

no buying brand label shoes,

no begging off morning walks because he wanted to sleep in until midday.

All the things that infuriated me on previous holidays are the things I missed the most.

I guess love is like that.

We had a nice time though and packed as much into the days as we could.

The small girl had grown enough to be able to go on some of the theme park rides

and so we did.

We rode on everything she could multiple times

and celebrated with sorbet and teppanyaki.

We fed seals, patted stingrays and watched as the dolphins flipped and gracefully flew through the air.

We saw the Emperor penguins and wondered how they felt with all of us staring at them through the glass

and at night we listened to the sound of the ocean through our open windows.

We explored a haunted house, which was stifling and made me feel like I couldn’t breathe

but the kids had a ball

and I was happy that we were all together,

Ivy and Noah very pleased that they had  been brave

and escaped unscathed.

At Ripley’s Believe It or Not the big kids were in awe of Dave and I because we knew how to play a pinball machine

and I rubbed some fertility statues even though my uterus had packed up and left town years ago.

We went to bed early and woke with the sun

and we walked until our feet ached.

We watched horses do-si-do

and introduced the kids to Bibimbap.

It was nice to forget for a while.

It was nice be to us.

On the sixth day in we spotted a sausage dog walking along the beach and the kids said “we miss the puppies”

and the next day Ivy was a little slower to get up and I knew our time was coming to a close.

It had been a lovely break while it lasted.

Our time in the hospital with Ivy in renal failure for the second time this year has made me reassess a lot.

Like how my fighting the doctors is getting us nowhere

and how I find it very hard to like myself if I feel as though I am upsetting others – I am a chronic people pleaser

and no matter how hard I try, I cannot change that about myself

but I can change some things.

We have been introduced to a lovely social worker, who, along with out awesome play therapist, is helping Ivy and I  to work with Ivy’s team better

and helping Ivy to address her fears.

Things had been tense for a while – a story for another time perhaps

but for the first time ever we are having a family meeting with all of Ivy’s doctors, scheduled in two weeks from now.

To tell you the truth, I am nervous and scared

but I am hopeful too that we can come to some sort of agreement on Ivy’s health care plan.

It’s important for so many reasons.

As the days approach I’ll probably need to write it all down, process everything that I’m feeling

but not today.

Today is for reminiscing.

 

 

 

 

 

 

 

 

 

When nine becomes eight.

While we were in the hospital, my big boy decided he no longer wanted to live with us

or should I say, he no longer wanted to live by our rules.

He would have been perfectly happy to stay with his family if he’d been allowed to do whatever he wanted.

The thing is “whatever he wanted “was amounting to  getting up to no good and hurting the other people in the family in the process.

Fostering a child is never easy.

There is a lot to learn when you bring a child into your home and into your heart

but over the years we had all managed to settle into the dynamics of  our family.

As the big boy went through his stages, we dealt with  his anger, aggression and defiance, along with all the other things that a child who is not living with his biological parents goes through -

and they were many and varied.

I know for a fact that AJ went through some terrible abandonment issues every time we were ushered into the hospital

and my return into the house post admission was filled with him testing me and pushing all of my buttons, in a strangely routine re-entry punishment program.

We did the best we could, he and I

but it was not working in the end.

I wanted so desperately to teach him that he didn’t have to be a product of his parentage.

With my father being alcoholic and my brother and sister (his mother) drug addicted and alcoholic what I wanted more than anything else was for him to break that cycle.

Admittedly I am not perfect

and sometimes my anger for my sister spilled over and became muddled with all I was trying to achieve, all the love and energy I was pouring into this boy

but I tried to teach him and tell him

that he was good

and worth it

and life depended on the choices he made and the consequences that they carried.

Unfortunately I don’t think that’s what he saw.

I think he saw that my expectations of him were too big

and as a result he turned around and became the very person I didn’t want him to be.

Alcohol, drugs and now couch surfing his way through his quickly diminishing friend poole.

He didn’t see me before he made his decision.

We had a heated text message conversation where he was given two choices:

pull up his socks or become independent.

He tried to back down and suggest that perhaps he just have some ‘time away’ from us

but I watched my mother and my father accept my brother and then my sister back into the family home time and time again.

I watched as they used and abused everything my parents offered, stole from them, used our home as a place to store and deal drugs and endured way too many police raids

and I knew that I would not do that to the other six children in the house, no matter how much I love him.

There was no in between for me, no coming and going -

there was only the two choices

and so he left.

Life has been way more settled since he packed one over stuffed bag and walked away from us for his lifestyle choices

but I miss him.

I miss his great hulking form hovering in the hallway

and his silly sense of humour

I miss having to buy ten kilos of cheese a week.

Word on the street is that he is dealing drugs and has been off his face drunk for much of the two weeks he has been gone from my presence

and I cannot begin to tell you how much that hurts.

As a girl who watched her siblings and father self destruct,

as an adult who fought so hard to break the cycle,

as a parent who has drilled the ‘don’t do drugs’ mentality into her children with stories from her own childhood, as well as facts

but

I hope he is enjoying himself.

I hope he is happy and that he is safe.

I hope he is learning good life lessons and that one day he will come out the other end and be something more than his mother’s son

or my nephew

or the fostered boy.

I hope he finds himself

and that one day he comes back to visit, knowing that we tried to teach him well and that we always loved him

and always will

but I think we both have broken hearts -

at least mine is quite broken right now

and the hurt and anger and the feeling that he has been given a raw deal in life is keeping him away.

 

 

 

Spirit-broken.

When the small girl is in surgery and I’m waiting, I tend to bite the inside of my lip.

It’s a subconscious –  conscious thing, you see,

Sometimes I bite so hard that it bleeds.

It’s mostly to stop the stupid tears that leak from my eyes but it’s also some kind of terrible release.

Feeling that physical pain helps the emotional pain inside me settle.

It’s the only way I know how to cope.

I  sent her to surgery yesterday for another temporary subclavian line because on Monday we were forced back into the hospital with Ivy in renal failure.

Again

and peripheral access is incredibly poor

and now we are set to spend another Easter in here and most of the school break, while we do the sleep , vomit, reefed and replenish thing

and wait for Ivy’s kidneys to come good.

I asked the kind surgeon today how many times we could put Ivy through this and he said, in all sincerity, because he is good

and kind

and a doctor

and quite literal,

that we could keep placing lines like this indefinitely  -  until the vein gives up.

I didn’t mean it that way, really.

What I meant was how many times did he expect Ivy could go through the trauma of surgery and recovery before it all became too much for her -

before her spirit is broken

which I’m sure is a confronting and confusing question to ask a surgeon, who cuts and fixes physical bodies for a living.

I need the doctors to think about how this affects her, that she is more than a ‘case’.

I need them to care about the little girl who is struggling with all of this stuff, right now.

I want them to see what I do and know that we are not doing her any favours by having ridiculous expectations.

Surgery, for all intensive purposes, went smoothly.

The line went into the vein, where it should sit quite happily until it’s ten day usage is up.

The kind surgeon and the anaesthetists involved were all very happy with how things had gone.

Our nurse told me that I need to find the silver lining in all of this (of course he was  right) and a smooth surgical procedure is pretty shiny -

I can’t help but feel that lining is a little dull, right now.

The reality is, I think my girl is already  spirit-broken.

I think it might be too late.

 

 

 

About not having a job.

If one more person tells me I need to get myself a job, I just may implode.

There are several reasons for this, the first of which has something to do with why other people, women in particular, feel that being employed is the be all and end all of life -

that a stay at home mother has little worth and nothing to give to society.

I wonder how we all came to be so close-minded, why we attack our own kind,

why money is seemingly everything and how others belittle the work that people who are at home do.

I cannot judge anyone.

Mostly, I love being able to stay at home

but I come from a working background.

I’ve worked full time, part time and casual right up until I could no longer hold down a job, with all that was going on with Ivy.

My own father told me I would be useless unless I had a career, chastised me, when I refused to return to work before Lily had turned one

and so staying home for me has been difficult at times.

When you have been brought up being told that you will be nothing if you do not have a career by a man who only realised the importance of family on his death bed,

it is easy to feel worthless and non- contributional, especially when my older kids work on weekends and I am left at home with the washing.

Some days I long to use my mind for something challenging.

Sometimes I’d just like the acknowledgement of working as part of a team, being seen as me and not somebody’s mum.

Some days I’m just driven to distraction with boredom.

After the washing and the picking up and the cleaning, I am left to my own devices and occasionally it becomes self destructive

and I berate myself for not being able to figure out a way to hold down some form of employment too.

Some friends insist that I just do ‘anything’ to bring in some income into the house.

Others suggest that I return to midwifery – that I must somehow find a way to go back into the profession I trained in.

The thing is this:

how?

How can I return to work?

Is there such a place out there that caters to someone like me?

Today, for example, would any employer have let me drop everything to pick up Ivy when she became too tired to be at school anymore,

would they have excused me from my duties while I attend multiple doctors appointments at the most inconvenient of times.

I doubt it.

Is there a company out there who would employ someone who suddenly needs to leave work for up to three weeks at a time, while their child is in the hospital,

one who would not be uncomfortable with the uncertainty of when it would all happen again and how much I would be able to commit to my position.

No, or at least, I am yet to find somewhere.

In  less than a week Dave will be without a job.

After nineteen years working in one company he was downsized.

He and I have talked things over repeatedly and know that this is ultimately going to be the best thing for him and for our family,

even if things are tight for a bit.

We did talk about my going back to work, doing a bridging course to return to nursing

but in the end it was decided that it would be better for everyone if he remains the income earner.

Better for him because of his own sense of self worth (he is madly applying for as many local jobs as he can)

and better for the kids because, well, because adapting to having a working mother and a stay at home dad would be interesting and stressful all at once

and we all feel that added worry is not what they need right now.

I’m by no means belittling Dave’s place in the family  -  he is a man who can and has held the fort when Ivy is in hospital

but for some reason the only question the kids feel confident in asking their father is ‘where’s Mum’.

Besides that – I just want to be there for them.

Also, with Ivy’s circumstances being unrelenting and unchanging I feel that I need to be there for her as well.

Which leaves me in the category of being ‘unemployed’ in the eyes of many, which also translates to worthless to society at large apparently.

I liked to work.

I did.

Admittedly, I hated having to leave my kids (who doesn’t)

but once there, I worked hard and enjoyed it.

However, not working doesn’t make me useless or unproductive or any of the labels that society pushes onto a stay at home parent

it just means that most people don’t see, understand or appreciate all that I (and thousands of others) do in each day

and there is no income for it.