Ok, yes I am, in a kind of normal, ‘my kid is having an operation’ way.

What I am really scared about is the afterwards.

Immy was grey.

I walked into the kitchen about a week after she finished her course of post op antibiotics and she was sitting at the table, eyes flat and unmoving

and her skin was grey.

He mouth was slightly open, her cheek resting on the table top.

I touched her forehead, which told me that this kid was hot but there was no flush in her cheeks, instead she was a mottled grey the colour of dusk, almost.

In nursing we were taught the worst colour to be was grey.

Being pale was not good but being grey was bad, an indication that something sinister was going on.

I called for David.

I picked her up.

Her body lulled against mine like an old rag doll.

“She needs help”, I said and he asked why and I said, “look at her, she’s grey”.

So I took her to the hospital and she was sick.

Septic from her abscessed tonsil that had burst (quinsy). The infection now in her system. An infection that might have stayed in her adenoids, had she not had them removed three weeks previously.

Three weeks she lay in the hospital bed. Not much older than Ivy is but a bit.

Three weeks of not knowing, of watching and worrying, of waiting for her to fight back.

She did.

She was strong.

When William was born, he was grey.

In midwifery we were taught that blue was ok, purple was ok but grey was bad, very bad.

In the NICU he was pink until he had his first big crash and then he was grey.

In midwifery we are taught that if the baby looks mottled and grey that it can be a sign of infection or a sign of cardiac problems.

William was grey.

On the day he died he was ashen.

Ok, so I am worried, in a weird blogging at all hours of the night and into the morning because I can’t sleep kind of way but not for the reasons the doctors and nurses all think.

I don’t want to do grey again.

I know you all know I’m crazy, right?

So it will be totally safe to tell you that I have been having these awful nightmares and you will accept that just as you accept that I am as nutty as a fruitcake.

Nightmares are a recent addition for me, as an adult. Sure, I had them as a kid but as an adult they were few and far between (unlike some people, who have recurring dreams about ghost cats in a haunted house - not mentioning any names, but if I said wonderhusband, you would all be smiling and nodding knowingly behind your computer screens, wouldn’t you?). 

I started having vivid dreams when I was pregnant with William and the worst part was, they came true. So, when the nightmares come the hair on my arms prickle and I sit up and take notice.

Just a little legacy from Will’s time with me.

Yeah, crazy, right?

Anyhoo, these dreams are freaky and they are about Ivy, of course.

For anyone who doesn’t know, Ivy sleeps in my bed.

She just does, ok.

I don’t like it, it’s squishy and I often ache in new and interesting places, so that I can share my space with the girl but ever since she’s been sick, I’ve stopped fighting it and just let her be. I figured, she’d become a teenager one day and not want to sleep with me anymore.

These dreams come in the small hours and they are about the girl, not breathing.

At all.

They are very graphic and detailed and in the night I get them mixed up with reality sometimes.

The prednisone keeps her temperature very low and as a consequence, she is cold to the touch, even though she is perfectly fine.

And I panic, okay?

There, I said it.

It’s scary and it’s not doing either of us any good.

Or David for that matter because I cry out and wake her and wake him and ask him to get my stethoscope just so I can listen to her little heart beating away and then I can’t get back to sleep for fear that she will, you know, just stop breathing.

I know where this is heading.

It is insomnia inducing and breakdown worthy but what I don’t know is what to do about it.

It feels crazy and yet it doesn’t.

I can break it down. I know just where all the fears are coming from. I know it has everything to do with William dying and with all of the stuff that is going on with the girl, well, it’s just me trying to protect myself because I couldn’t do it again. I couldn’t survive. 

I can’t even say it.

When those fears whisper in the back of my mind I push them away, make them not so, because we all know if you don’t think about it, it will never ever happen, right?

There is some sense to it all, if that makes…sense.

So here it is; out in the universe, floating around, my sanity (or insanity, depends how you look at it) hanging by a thread.

Be kind, okay,  because I haven’t had much sleep and we all know that kind of deprivation makes a girl emotional.

What is your best bet, for a waiting time, my friends?

Six weeks?

No.

Try six months!

That’s right, six months, that will see us just about up to Ivy and Noah’s 3rd birthday

in November.

The paed’s idea that we see this new doctor before we see him next, at the end of May, is one of pure fantasy. In fact, I think I heard the endo’s receptionist fall to the floor in a fit of hysterical giggles, when it was mentioned.

David was told, in no uncertain terms, that we could not actually make an appointment, that Ivy’s referral would be sent to a booking commitee (yes, you read it right) and we would then be allocated a time and date to which we would attend.

Bwa hahahahahahahahahahahahahaha!!!!!!!!!!!!!!

OMG, where are we living, people?

This insane life that we lead just got a little bit crazier.

Of course, Ivy is not a high priority.

I mean, what could possibly go wrong, with a two year old, on large doses of prednisone, in the next six months?!?!?!?!

Best friends.

Boys.

Double dating my girls.

Ewwwwwwwwwwwwww!

Boy germs.

It wasn’t that long ago that we used to tease each other about boy germs if an offending species of the male variety brushed up against them and now they are ‘going out’ with them.

Apparently, all the twelve year olds have boyfriends.

Oh. My. Gawd.

I turn my back for a second and this happens.

They told me the creatures’ names but I couldn’t hear them. I had planted my fingers firmly in my ears and all I could hear was the thump thump thump of my heart pounding in my chest.

(Not listening, if I can’t hear you, it isn’t so).

I’m mature like that.

My babies.

Have boyfriends.

Oh, I know, it’s not serious boyfriendedness, nothing as concrete as kissing even,  at  least, not yet… but but but… it’s started and I’m not ready, not ready at all.

While we are on the subject, what is it with the still a fair way off from twelve year old boy, proclaiming his undying love for Bree the girl with the biggest boobs, in 6th grade? (tasteful, hey? Yes, that is why he is going out with her).

Over MSN, for goodness sake!

 He’s too young for that kind of stuff. Too young, I tell you!

MSN has now been banned from the kids’ computer.

Whoever thought it was a good idea to have toddlers and teenagers together?

I can’t possibly be expected to cope.

Where’s my corner?

I need to crawl into a small dark space and rock for a while.

We are supposed to be going to a wedding this weekend but I haven’t seen my friend for so long now, I feel that I shouldn’t go. Besides that, when I think about getting out amongst people my heart jumps into my throat. The thought of mingling with other people makes me nervous.

Sick nervous.

It hasn’t always been this way. I used to be a social creature, who needed to get out and be with others but as I become increasingly overwhelmed with Ivy’s illness I feel ’safer’, for want of a better word, staying at home.

Don’t get me wrong, I still get out. I have to. The kids have after school activities and of course there are all the doctor’s appointments but when it comes to being social, I suck.

Alot.

I used to be good at holding a conversation, making my thoughts and ideas known but now I find it is easier to be quiet.

It seems the phobia for staying inside has made all my other little quirks twice as bad.

I worry about what I say, I think what comes out of my mouth sounds weird or unimportant or just plain dumb.

I worry what I look like to others. That I am not good enough in some way.

I just worry.

Weird, I know.

The sad thing is, it’s starting to be more than just around strangers.

My family, my friends, in particular, my own husband, who I have known for years and knows me inside and out, I suddenly feel inadequate around.  Like nothing I say holds any interest. I feel like I’ve said it all and I’ve exhausted all new avenues of conversation without sounding like a total train wreck.

It’s better to just be quiet.

I’m really struggling. (insert nervous laugh and wonder if I am divulging too much of my inner thoughts to even the most forgiving of universes).

Psychotic?

No…maybe…I don’t know anymore.

In losing myself, through having to give up work and being confined, often, to the four walls of a hospital room, I have just lost my confidence in who I am, I think.

Maybe I just need a holiday, time to reassess.

Also, a period of wellness for Ivy might be good.

Might help.

I am typing at the kitchen table waiting for another friend to arrive with lunch and I feel as though I am going to throw up. Try as I might to deter her from ‘doing lunch’ she is insistant that we catch up. I cancelled my going to her house (she is a chef) and so she is bringing lunch here.

Part of me is very grateful to have such a wonderful friend, who will go the extra mile for me but another part is worried that I am not good enough for her…for anyone, really.

My maternal grandmother had very bad agoraphobia in the last years of her life. It makes me think that maybe there is a little mental health issue going on here and that a trip to the prescriber of the crazy pills might not be such a bad idea.

Ugh, I don’t know.

Do you have funny quirks and phobias?

Please tell and make an old shut - in feel better.

She physically and me emotionally.

I am not sure I can cope with her being unwell now.

Not now.

Not any time in the next six weeks or so.

But she is.

And I have to deal with it.

Because.

Just because I am the mother.

Yesterday I had the world’s biggest panic attack and I haven’t had one of those in such a long, long time.

There was nothing to trigger it.

Nothing obvious, except the last six months of doctor yuckiness and second guessing myself as a Mum. Nothing obvious except that William’s birthday is coming and my whole self is being engulfed by his presence.

It is really just an adrenalin rush, the panic attack. An overdose of it, if you will, and you get the sweating and  heart palpitations and the dizziness. All the physical signs of the emotional turmoil coming to the surface.

I hate them though.

They are an open sign of the crazies.

For me.

So, the girl’s ears are bad and she is throwing up her antibiotic and her poo is gross, runny and black (because she is on the iron and because she has gone back on the Erythromycin - I know Mary, I know). She is back on the EES because she started vomiting the Bactrim and she spiked a temp. Now she is not stomaching that either.

Her tummy is just so tender.

We were hoping to go away this Easter but all of our funds are sadly depleted from ongoing medical expenses and Dave just cannot see a way around it. He is stressed about money, which I completely understand and support and I am stressed about everything else.

Which brings me to my point.

My breaking point.

I wonder if others can feel it coming.

When they reach the end of their tethers and they know that if something doesn’t give something is going to give.

I can feel myself getting agitated and short with the children. I can feel that…lump…just under the surface.

You know that knot?

It just keeps growing, balling itself up, until eventually, it will cause an obstruction and all the panic, anxiety, stress, sadness, anger, horror will come bubbling out. As harsh words, as ‘what about me’s’ as emotional breakdown.

If I don’t tend to this node, do something to ease the pressure… I don’t know, really.

Please tell me that it’s normal. Please tell me you all know what I am talking about. Please tell me I’m not at breaking point yet.

These are strong words, my friends and if they are too painful or heavy then, please don’t read. I need to write my thoughts down and push them out into the night.

I am not writing for sympathy. I don’t need help. I need to work through all of this.

I am writing so that I can process my feelings…

When William died, I wanted to die.

I wanted it to be me.

I literally could not see past myself.

I didn’t want to see the other beautiful children who were waiting for me to pull myself together. Of course, kids have a way of pulling you back to the present. Their life force buoying me up when I felt like sinking.

For almost four years I have been trying to get a grasp on the grief I feel for a baby who is not here, who I never really had the time to get to know. I failed dismally, of course and so I went to the medical profession for help. My GP put me on antidepressants after I lost the plot last October and I started to see a psychiatrist.

The GP moved and the psychiatrist sucked.

She wasn’t interested in teasing out the knots of grief, that had gone unattented for so long. Her answer to my weeping was to push the medication up further. All my own attempts at dealing with having William’s blood on my hands had not worked as they relied on my obstetrician to help me.

So.

Now I am off the medication. For whatever reason, it doesn’t really matter.

Have been for over a week and I am not feeling very good. Somedays, yes, I will admit it, I have been feeling… ’suicidal ideation’ creeping back into my being. I don’t like that feeling either.

I have cried buckets. I’m not ashamed to say that.

I’ve cried because;

I cannot trust any of the doctors and

I do not trust my own self.

This is so complex for me. It has everything to do with William and the choices I made for him. In his birth and in his death.

When you have to turn off the ventilator that is sustaining your son’s life, it stuffs up your own for what seems like forever and it becomes part of who you are. Seeps into your everyday.

 Now I am second guessing myself with Ivy.

I hate it.

I want to be confident in her care. I want that confidence who whispers in my ear that my gut feelings are right, that I am doing everything I can for my girl and what I am doing, is great.

I want to jump up and down and tell these doctors to do a better job.

I am her mother, for goodness sake.

But I can’t.

The doctor’s don’t help, with their mistrust but when it comes down to it, it’s me who doesn’t believe me.

That little voice, ever steadying, says, wait, maybe you are wrong. Maybe what you want for her is the wrong thing. Maybe your gut feelings are wrong.

Yesterday was a low point.

Lower than last week. Whether it was because the last of the crazy pills had left my system or because I felt as though we were not getting anywhere fast and I finally lost the plot or both. I was a howling mess of self pity.

Today is a new day though and the sun is out.

So what happened yesterday?

I got in the bus with the toddlers.

On the way to the appointment, Noah puked up his breakfast in a fetta - type pile of cark sicky goodness. Word of warning, my dear friends, do not feed your child seed bread toast after a nilla shakey and then pile him in the car for an hour long drive. This is the third time in as many months of early morning appointments that Noah has protested. No more sitting up the back of the bus for that little guy.

I kept on driving though until we found a parking spot.

I changed the boy and stripped the carseat… or was that stripped the boy and changed the carseat???

We got there and waited.

About an hour later the paed turned up and we were invited into the hornets nest of dermatologists.

Ivy had a small erruption of blisters on her bottom, which I exposed to… ooh, lets say, half a dozen derm residents and registrars, two medical students, the paed and the head honcho, King DermGuy.

They bantered around what is was, what it could be, what they would do.

Hello?!?!?!?!

Parent here.

Talk here!

But No.

After a lengthy discussion, that didn’t involve me at all and only briefly involved Ivy’s bum, it was decided that they would do nothing.

Yep, you heard right.

Nu - uh - uthin’.

Let’s pause here briefly to go over the short history leading up to this appointment…

1. The paed would not alter Ivy’s meds without us seeing this guy.

2. We were told that once we had seen this doctor, a decision would be made and Ivy would be treated accordingly.

3. Seeing this guy is easier said than done.

It was decided that we would keep reducing the prednisone and induce a blister attack! (Because the blisters that were already there were not acute enough). When she was all blistered up and in pain they would do another biopsy.

Huh?

I guess it’s a decision.

David and I have been scratching our heads and wondering why.

The last biopsy she had on her bottom was on Christmas Eve. They said it was perfect and that we could not ask for better.

The last biopsy she had has left a giant keloid scar.

The last biopsy gave us a diagnosis of pemphigus.

Why is all of that not good enough now?????

So here we are, waiting for our baby to blister and it feels wrong, so very wrong.

So there it is. The ugly just got uglier.

or bad

just very very ugly.

More later when I have licked my wounds.

Hurting over the insinuations of Ivy’s colonoscopy reults.

Even though I have been cleared.

Last night it was all I could think about.

Here’s the thing,

I was abused.

Take that for what you will.

The foster boys, who are in my care, were abused.

I have spent my whole adult life running from parts of my childhood. Trying to be the best at being a mother, trying to be as unlike my father as I could.

 My own mum did the very best she could for us and she was, and still is, my world.

Being a great Mum is my everything.

When you come from a childhood that was dysfunctional, you do all you can to get as far away from that as possible, or, you can become a repeat offender. The stats are there. Sadly, many who are treated badly turn around and do the same thing to the next generation.

I do not want to be included in that group of statistics.

Ever.

So to have someone make that suggestion…

it’s like something inside me has died.

I will be second guessing my actions and scrutinising everything I do for the rest of my life and it feels as though everyone else will be watching now too, waiting for me to slip up.

That can’t be good can it?

That can’t be normal.

It has taken such a long time to trust myself and others.

Where do I stand now?

It can’t be.

I’m not ready for tomorrow or Thursday.

I don’t think Ivy will ever be ready…

The paperwork for the procedure came yesterday. No cover letter, nothing so friendly. Just three pieces of paper, the first being the doctors fee.

By the time I had finished reading just that alone, I felt like I could sh*t a brick. That’d give him something interesting to scope! Make it worth all the money he is bleeding from us.

Does it really cost almost $700 to stick a ‘flexible camera’ up one end and down the other?

 I mean, really?

That’s without the gas guy’s bill and any pathology that needs to be done…

Of course there is going to be pathology! That’s what the scope is for -  to get biopsies!!!!

Okay, we have insurance, so we will only be out of pocket around $300 for the procedure because that is the gap between the recommended retail price and the mark up but still.

$260 for consult.

$300 up the bum and down the throat gap.

$200 excess (because we haven’t had an admission this year).

Christmas Eve was still last year, my friends.

No, it doesn’t count.

Nor does the week leading up to New Year.

Plus sleepy juice and tests (unknown).

Probably looking close to $1000 by this time Friday morning or more. I hear these anaesthetists can charge whatever they like. They do hold your life in their hands after all.

Not going to pay your bill? Oh that’s too bad, oops, I just forgot to put you all the way under! What’s that? You can feel the doctor slicing you. Oh, I’m sorry.

Why does it cost so much anyway? Ivy only has a small bum. Her large intestine can’t be that long.

She’s only small. Couldn’t he do it for half price or… I could bring along Noah and maybe get a two for one deal?!?!? (kidding, just kidding).

I know, I know. I’m being overdramatic and cheap. What price can you put on the possibilty that he may find something important that will help to fix Ivy?

Oh and he’d better find something or i’ll stick his flexible camera… well…right where it’s supposed to go!