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The zebra and the horse.

 

There’s a saying amongst doctors and a favourite with parents with an immune deficient child:

“When you hear hoofbeats, think of horses, not zebras”

which basically means look for the common things before you start thinking about rare diseases.

My girl is a zebra.

It’s taken a long time for me to accept that.

It’s taken a long time for Ivy to accept that too.

Today, when we went into the hospital, I relayed the aphorism to one of our favourite nurses because Ivy was wearing a  cute zebra shirt

(another thing I have long avoided – anything zebra but they are popular this season, it seems and the small girl finds them adorable)

and on hearing the story she looked me up and down for a moment and then said,

“well, that’s good that you’re a zebra then, isn’t it Ivy because zebras are precious and unique and every single one of them has different stripes from the other”.

I knew we loved that nurse for a reason.

The review today meant our release from this admission and hospital

and this makes me incredibly happy.

When we were sitting in the car Ivy asked me about being a zebra and so I explained the meaning of the story.

She thought about it for a while and then said, “I think we are all zebras, really. It’s just that some of us have darker stripes than others”

and “why would anyone want to be the same as everybody else?”

My daughter, the philosopher.

She’s right though, we are all unique and that is what makes humanity special.

Unfortunately, not everyone sees it that way.

Last week, while the girl was off seeing her awesome play therapist, I went to see the social worker.

The morning had been a flurry of busy-ness and so by the time we had arrived back in the hospital grounds I felt rushed and flustered.

I waffled on about how I felt about things that morning and perhaps disclosed a little too much of my thought process.

I worried about the family meeting that is coming up this week

and how it might change things.

It prompted the social worker to tell me that my thoughts were quite distorted and that I needed to seek out some professional help.

My response to that was silence.

You just begin to trust someone and then, with a comment like that, it all changes.

Why would I want to talk after that.

I know I am screwed up, okay?

I know I am a product of my childhood and my father’s words.

I know I over think things and that I worry too much about what others think of me,

that I get anxious over things and stress about stuff.

I know I will never be able to grow out of it, no matter how hard I try and no matter how much therapy I have.

I understand who I am -

both good and bad.

The thing is this – most of the time it doesn’t interfere with my life or my ability to raise my children and have meaningful relationships with people.

It doesn’t until I have to talk about it and then it does -

if I let it it can consume me

and on that particular day, I let my walls down way too low.

Mostly though I compartmentalise it all and it stays out of my every day life.

Besides, that – I don’t believe that my thought process is distorted because I feel threatened by medical professionals and worry that if I push them too hard they will no longer want to give Ivy the best of care.

I know plenty of mothers with kids who are chronically ill, who worry about the same things and feel the same way.

The thing I need to learn most out of this I think,

is to keep my guard up and not to openly process my understanding of my character to anyone who isn’t David, my mother or a very very close friend,

which is hard when I don’t like secrets or masking who I am so much.

I will though, so I don’t rock the boat.

The last thing I need is more therapy to dredge up all those feelings of inadequacy again.

It’s time for me to be a horse,

so I can look after my zebra properly.

 

 

 

 

 

 

The process of cannulation.

When we arrive in Accident and Emergency, the girl is very unwell.

A doctor comes and says a line will be needed and quickly.

I tell them not the cubital fossa, not the hands but they try anyway because surely a mother cannot be right about these things.

The girl lays quite still and barely acknowledges their failed attempts.

In a last ditch effort they go for her feet and suddenly she is alert and denying the doctors  any access.

The feet are her ‘last resort’ choice but by last resort, she actually means never.

Her father and I try to talk to her  and reason with her (he is experiencing an emergent emergency admission for the first time)

but she is not listening any more.

Soon I resort to begging her

and then when that doesn’t work

and the doctors and nurses are becoming more anxious as her blood pressure drops

and her heart rate climbs

I do the one thing I hate the most;

I hold her down,

while they slip the needle into the only vein they can find.

She is momentarily angry with me before the job of compensating becomes more important

and she slips into semi consciousness once more.

 

In the wee hours of the morning the cannula in her foot goes belly up.

She is hot and sick and the anxiety hits her hard.

Luckily there is another needle already in place but the small girl will not let her nurse anywhere near it to flush it.

She screams and folds her arm tightly into her belly so nobody can get to it

and I can feel her heart beating so quickly, I think it might break free from her chest to escape the fear.

I try to calm her but she is overwhelmed by what comes next if her arm cannula (which has not played nice since its placement) refuses to work.

Our nurse is lovely and calmly waits while I talk her down and then she says;

“I understand you feeling scared but what if it works and then we’ve used all of our energy worrying about something that might not happen.”

Ivy’s tears quieten but still I have  to coax her arm out from its clenched wing position.

When she realises what is about to happen the begging starts “please Mum, no. I can’t do this any more. It hurts, it hurts. It all hurts SO much.”

I feel her pain but in a way that is not as physical as hers, although the knot in my throat and the pounding in my head suggests otherwise,

it’s really just raw emotions getting to me.

Finally the salty water is pushed into her vein, she is connected to her fluids and away we go again.

She sobs loudly until I ask her if she is ready for a cuddle

then she snuggles in and is suddenly asleep

but I don’t sleep for hours afterwards -

all I can wonder is how much more she can take

and listen to her quick, sick breaths and hope that her fever breaks soon.

 

It’s day three and her second cannula has now given up and a red line of anger streaks up her arm.

The pump complains by flashing and screeching its unhappiness into the air of the early morning.

Nobody wants to cannulate again but with the discovery of a forth bacteria (note to self; no more theme parks)

and the addition of another antibiotic there is no choice.

An anaesthetist comes and I tell him not the hands and not the cubital fossa but he looks at them and says he feels confident he can find a good vein.

It’s either that

or the foot.

Here we are again.

Back at the beginning

and I wonder if any doctor anywhere ever listens to the mothers when they bring their sick children to them for care.

After two attempts and more little girl tears, he finally pierces a viable vein – just outside the cubital fossa.

He looks at me triumphantly and says “I don’t know who is more relieved, you or me,” as he wipes the sweat away from his forehead.

Sometimes I forget the pressure they feel to do right by Ivy as well.

I think we are both relieved.

Ivy more so.

Hopefully this one will last the distance.

 

 

 

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.