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Chronic illness: the parts we don't talk about


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Dutched up: Rocking the clogs expat style

Earlier this year I started hanging out with other bloggers on Facebook. It was great to be among other writers, hear their stories and be on this writing journey with them.

Then one day Olga asked if anyone else wanted to contribute a story about living in The Netherlands to their anthology. Never thinking that my story would be accepted, let alone published, I said yes.

So, after a great amount of work by Lynn and Olga in collecting our stories and editing, our book is finished. 27 bloggers contributed and I am one of them. I am so proud of us all for saying yes and making this happen. Thank you NL women bloggers.

I write about chronic illness so my story is related to the Dutch healthcare system. We have stories covering all parts of life as a foreigner here in Dutchland. It’s funny, it’s sweet. It’s all so true. If you have every lived here, know Dutch people or visited, there is something here for you. Please check it out.

Check it out on amazon.com here

for amazon.co.uk use this link

for itunes click here

book cover


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How I realised that “Because I said so” is a life skill

Back in May I wrote a story and shared it with about a dozen people at a Storytelling Night. It’s longer than my normal posts so I kept telling myself that this isn’t the place to share it. Well, I want to share it anyway. If you’ve got a few minutes, read on.

How I realized that “Because I said so” is a life skill

When I saw the post on Facebook about this event I loved it and my first thought was “I’m going to go! As a spectator”. A few seconds later this thought followed “go and read” and before I knew it, I was signing up on eventbrite. There was no reason or explanation. I have never done this before. Just a voice in my head saying: “do it”.

Then I saw the theme. Because I said so. I write about living with chronic illness. I write about self development and how you can get yourself unstuck. What’s that got to do with Because I said so?

I spent the next 2 weeks being completely blank. What story can I tell? And yes, the rules aren’t rigid or strict and I could write about whatever I wanted but….. there is something inside of me that always tries to do what I have been asked.

My default association with this phrase is that is negative. How many times have I yelled this at my kids?

Yes, I patiently explain the logic behind my instructions or involve my kids in the thinking process in how to come up with a conclusive course of action. I want them to be independent, self-sufficient. Leaders, at least of themselves.

Not sheep. Not blind followers of others. Because I want them to choose their lives. And a tiny, terrified part of me that has watched too many episodes of Criminal Minds and that doesn’t watch the news anymore because of all the terrible things that happen, wants them to fight like mad if anyone tries to grab them or do things to them.

I want fighters.

Ok, here’s a confession. I don’t always do that patiently. The explanation. Sometimes I’m having a bad day or they are behaving little brats and pushing all my buttons and the conversation is more like this:

“Put your nickers on.

Come on, move it! How many times do we have to have this conversation?

Stop prancing about and put your bloody nickers on! Now!”

I kind of understand the running around completely naked thing but putting your vest and t-shirt on, even your socks and yet your butt is still bare? What the hell is that?

I have often thought of this tactic, because I said so, as being the last resort of a tired parent. Probably because I only use it when I am tired.

So while I was thinking about what on earth I was doing, signing up for this, I realized something. I had no reason, no explanation. I just listened to a voice in my head that said just do it.

That started me thinking: where else in my life do I do things, just because someone else has said so?

When I was a teenager my mum used to tell me to just get up and dressed by 8am on a Saturday, even if I was going to read in bed all day. Just get up and get dressed first. I never understood it (and fought it a lot) but I get it now. Sorry mum.

It happened at work too. Stopping that project half way through because someone at the top didn’t like it. There was always a lot of blah blah blah around it: “new direction”, “maximize synergies” etc but it always came down to someone new at the top saying no.

And at home. My husband telling me to eat. In my pregnancy with S, I was really sick. At 4 weeks, the vomiting started and didn’t really stop until about a week before she was born.

Within the first trimester I was admitted into hospital 4 times due to dehydration and lack of nutrition. And a kidney stone. I was extremely nauseous and on bed rest. I didn’t feel hunger and didn’t want to eat so I didn’t. So my husband made me snacks and I ate them when he told me to. If he left the food with me, then more often than not, I would stop eating after a couple of bites. So he started staying and I ate. Because he said so.

Then one day he looked at me and told me he was taking me to the hospital. Okay I said. We didn’t have an appointment but he said he was worried so we went.

You see I was vomiting so much that I was on antiemetics. There is one that is safe to use during pregnancy. However a possible side effect is depression and I had sunk so deeply, so quickly. I knew that if I didn’t eat more I could die and I didn’t care. My apathy was complete and I had no desire to change anything. I wasn’t eating, it was dangerous and it was ok.

When he looked at me he saw that in my eyes and he didn’t like it. He told me to put my shoes on and I followed.

They admitted me. I talked to a shrink. I chose to stop taking the medicine and within a couple of days the fog had lifted. The world, which had become hazy, had sharp edges again.

I was still extremely nauseous, but I was ok.

For me there is a power in these words “because I said so”. In that moment, it was the power of protection: you are hurting yourself and I am telling you to stop. No debate. No time wasting. Just stop.

There is also the power of liberation. Take the birth of S. The doctor told me when to push and not push. I was induced and it took quickly. Within an hour I was having contractions less than a minute apart and I was puffing like Thomas the tank engine on speed, trying so hard not to push. I didn’t have time to think and I didn’t know what to do. My first, F, was born via cesarean so I hadn’t done this before.

So I did as I was told: “don’t push, don’t push, don’t push. Ok push”.

I didn’t need to figure it out or make decisions. I could let go of all responsibility and just focus on doing puffing and pushing. What a relief.

I have changed my view on “because I said so” and I have found these 3 things to be true:

ONE

There are times in your life when you just have to listen to someone else. We do not always get to choose: like all those projects that got cancelled. We need to accept and with acceptance, frustration disappears. This is important for the happiness of our children. It’s a skill that they need to learn.

TWO

It is liberation and an act of kindness. How many of you been stumped by this deeply philosophical question: what should we have for dinner today? Some nights, it kills me.

“What? I need to decide everything? Just tell me what you want and I will make it.”

Sometimes we need to be free of the responsibility of making decisions and just have someone else do it.

So it is an act of kindness to my children when I tell them:

“We’re eating spaghetti for dinner today. No discussion”. Or “Time for bed”.

THREE

It is the last resort of a tired parent. Maybe there are times that I need to start the conversation that way.

Because I said so is a life skill.


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Dear children, your happiness is not my goal

I sometimes struggle with being a parent, it seems so hard and kids just seem so determined to do their own thing. I sometimes wonder “what is it that I am supposed to be doing here? How can I know if what I am doing is right?”

So I did what I often do when faced with life’s big questions, I perused Facebook. Specifically, my saved items in FB that I have saved because they look really interesting and worth my time (but will actually take some time to look at so I  decide to do it later and continue with the chitchat instead).

I watched this Ted talk by Jennifer Senior on happiness for children. It’s 18 mins long and if you cherish your sanity as a parent, I highly recommend that you watch it. It is the inspiration for my post today for 2 reasons

  1. she has put into words thoughts that I have been struggling to define (and has research to back it up)
  2. I want the best for my children

So here is my attempt to explain why my isn’t my goal to make my children happy.

It helps my sanity, and certainly my anxiety, that I am naturally quite lazy. Hmm, hang on, thats not quite right; I work very hard when I believe in something. But when faced with something I don’t believe in, my response is “what’s the point?”

When it comes to parenting, these are some things I don’t believe in:

  • I don’t believe in parenting as a verb

Until the 1970’s, parent was only a noun (thanks for the info Jennifer): something we could be, not what we could do. This small grammatical change seems to coincide with an increase in the amount of work we apparently need to do as parents. So many objectives, so many goals, things we “absolutely must do” and things that we “must never do”. And that can be the same thing, the answer just depends on who you ask! Why should there be so much work? What is the point of all that running around, of the stress?

  • I don’t believe our goal, our objective, should be that our children are happy

I truly want my children to be happy but I also believe that we are responsible for our own happiness. So how can my children’s happiness be my goal? How can I make sure my children are happy? Take away their autonomy? Take away their independence? Replace it with instructions of do this, do that?

How would I even know what to do for my children when I get lost and sometimes can’t figure out how to make myself happy?

So what are my goals?

When Jennifer says “what if we aim for productive kids, moral kids, and hope happiness will come from the good they do and the love they feel from us?” my heart sings and my soul says “Yes!”

What if my goal as a parent was to teach my children decency, work ethic, love?

Well, to start with, I know what to do to teach these. I can demonstrate decency, a good work ethic and love. I can explain what it is (to me at least) and encourage them to develop their own values.

I can praise them when they practice it with a “you worked really hard on that”. How would I praise happiness? With a “well done, you are happy”? I think they would just look at me like I was a loon.

Decency. Work ethic. Love. I can work with this.

As I write this I realise this is exactly what my parents did for me. They taught me decency: how to treat others; how to behave in society so that my contribution is positive; how to stop myself being rude to the obnoxious colleague and still stand my ground.

They taught me to work hard, work thoughtfully and to be proud of myself.

They taught me how to love unconditionally by loving me and each other that way.

And you know what? I’m pretty happy. I’m fairly confident. So maybe it works after all.

Decency. Work ethic. Love

 

p.s. I am not saying that I have the answer for everyone. This just feels right for me.

This is just my response to that overwhelming feeling from society at large that I should be making sure my kids are happy and I just don’t buy it. Check out what Jennifer has to say. Think about it. That’s all.


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Bonding

They say that the first few hours after the birth of your child are critical for bonding.

If that’s true, I’m fucked. And F has a really great connection with some NICU doctors and nurses whose names I can’t even remember.

At 29 weeks my labour started and they managed to halt it after 30 hours.  My birth plan, which I hand only just started thinking about, became this: keep my legs crossed for as long as possible. Her lungs aren’t ready yet.

A week later you came into the world just before midnight, by ceasarean. 5 eager doctors waiting to whisk you away.

Before they dashed off I got a glimpse of you in the incubator about a meter and a half away. These doctors were greedy to have you to themselves, their reluctance to take those 30 seconde so that I could get a glimpse of you were clear (ok, let’s be fair, they needed to take action quickly to save your life so they couldn’t hang around).

That was the last I saw of you for 24 hours. You were a tricky little lady, with your tiny veins and losing fluids so quickly. They have never had such a challenge to keep a baby hydrated before (and I hope it never happens again).

I did not recognise you that second day. You were so tiny, and so different than the baby I had seen the day before. Wrinkled. Where had all the softness gone?

It took two of them to pick you up, hold your limbs in place and keep all those tubes and wires in place, and place you on my chest. I don’t think you could have found two happier people in the world at that time than us.

We didn’t get long, kangarooing is very tiring for premature babies, and you had to go back in to your incubator,your new womb.

Over the next 5 weeks we didn’t get t spend much time together and I didn’t get to hold you much. You were really ill and sometimes I wasn’t even allowed to touch you at all.

The next few years were a roller coaster where I felt that I never gave you the attention that you deserve because there was so much to do to keep you out of hospital, to get you feeling well.

I always thought that we only started bonding when you were about two and a half. This week you turned 7 and I realise that I was wrong.

We have been connected, bonded since the moment you existed.

I did not have a “big moment” or rush of feelings when I looked at you the first time. There was no sudden falling in love. I was in love with you already.


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Make the ordinary come alive

I know, comparing yourself or your life to others is the first step on the road to dissatisfaction and frustration yet sometimes I do compare. Or notice the differences.

Perhaps I am just fooling myself, but “noticing the differences” feels better, more innocent, even a touch scientific. There’s a clinical detachment with “noticing”.

Ok, I’m getting distracted. What have I been noticing?

It’s the school holidays and as usual we don’t have a lot planned. While there is an underlying spirit of freedom, going with the flow, living spontaneously, there is a seed of doubt: are we just too tired to put some effort into it? It’s hard enough figuring out what we are going to have for dinner let alone plan exciting adventures that all the kids will love.

Try to find something that a 13 year old boy, a 6 year old girl and a 2 year old toddler will all like and can do at the same place. And that doesn’t cost a fortune. (Leave tips in the comments)

But when you have swings, climbing frame and a football… Everyone is happy. So although there are so many amazing things we could be doing while on holiday, most of the time we are playing in the garden.

While I was noticing how our activities are always super simple and wondering if I was shortchanging my kids, a dear friend of mine sent me this (and saved me):

image

I don’t know who wrote this but I like it. I love it. It is at the heart of me and everything I believe about life. Sometimes I forget but when you appreciate and value what you already have, life is extraordinary.


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The Art of Lego: (re)visited

A while ago I wrote about the Art of the Brick exhibition. I couldn’t decide if we should go or not.

Well, we went.

It was really great. It’s amazing to see these great pieces of art and sculpture. My thoughts flitted between “oh, so that’s how you do it” (to recreate The Scream with lego) to “how will I ever be satisfied by my own creations ever again?”

S didn’t break any pieces but she did hug the lego man in the play area at the end. And started to build onto him (well, they put lego there to play with! it was hard to stop her).

F loved it. She listened to the audio tapes about the artwork for every piece. Well, she certainly used the device and entered the number for each piece, I don’t know how much of the recording she actually paid attention to.

Sometimes you just need to stop thinking and go and do what your heart desires.

photo-3S is at that age when she really wants to see the picture you have taken, and comes to look before I have even taken the picture. But trust me, it was really cute to see her hug this lego man.

 


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The blessings of tragedy

Last night I had an opportunity to get to know some fabulous women a little better.

As we each took turns sharing something about ourselves it struck me that there was something we had in common: a pivotal moment of hardship. Something happened that made us re-evaluate our lives.

The result? We became women who choose what we want in our lives.

Consciously choosing to spend our time on things that give us energy.

And possibly more importantly, choosing what we don’t want.

Someone expressed what I secretly hope to achieve with my new business: “I only work with people that I want to work with”. How amazing is that? Thank you for your inspiration, this is what I want to be able to say.

As for the rest of my life, I have been working towards this too.  My life is not filled with lots of people, but the ones who are in it are important to me, that love me and I love them.

The precious time that I have, I want to use for them (and it is precious. About 25% of my waking hours are spent on being a carer).

So the blessing of my tragedy of chronic illness is that I know that time is precious. I don’t waste it. (much)

Now, look back to my 20s I wonder what I was doing with my time and I realise that a I was doing a lot of “filling it”. How tragic.

So now, like the ladies I met last night, I am consciously choosing, fitting the important things in first. And trying not to fill all the gaps in the jar with sand – but trying to leave empty spaces where the air can get in and I can breathe.

for-web-Big-Things-First

thanks Christi for the image

 

p.s while I was looking for images I came across this. Just love it.

buy the damn shoes