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Chronic illness: the parts we don't talk about


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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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5 tips for the caregiving husband. #heforshe

My sister and I were reminiscing the other day about things that happened in our childhood and as she talked I realised that I hadn’t thought about these events – big events – for years. I had never thought “what was that like for everyone else?” I started to see them a new light and it made me wonder what our history with Bartters and chronic illness was like for my husband, J.

The mystery of : what was wrong with our child? The emergency caesarean. All the hospital drama (our very own Greys, but without any of the hook ups). The years of intensive care and so many near misses.

I know what it was like for me.

But dear J, what was it like for you?

What is it like for a man when he finds out that his wife might lose her baby? His baby?

What’s it like to see the business end of a cesarean; cuts through seven layers of her body, edges pinned back while they put their hands in to pick up your little baby saying “grab the other leg”?

What’s it like to leave your wife on her own, barely able to walk to the hospital to visit F, because you need to go back to work? (just to clarify, I wasn’t walking all the way from home, that would be heartless! I was at the Ronald McDonald house next to the hospital).

I do not know what that is like, I can only imagine. I do know this: when you are sick or it is you that has had the baby, everyone knows what is wrong, they know they need to express sympathy of some kind. They do not expect you to come to work.

But the husband? They expect him to come in, be focussed, do their job. Carry on as normal.

Because while they understand the terrible situation you are in and have sympathy, there is still a job to be done.  They give you a day or two of leave and that is supposed to be enough. You might use some of your vacation days too but there is only so much extra leave that you can take before employers start to feel that they cannot rely on you.

So, husband with the wife who needs you and the child who is fighting for her life, what do you do?

You can’t do everything and someone is always going to be disappointed. Rock and a hard place, that’s where you are my friend.

Here are some suggestions, from a woman who has been on the other side, noticing what you have to deal with.

  1. Accept: you can’t do everything. And that’s ok.
  2. Breathe. Deeply. You get cranky and uptight when you do that shallow, upper chest only breathing. If your belly is expanding when you inhale, you are breathing well.
  3. Sleep: take naps. Lack of sleep really compromises your decision making abilities. It just messes up your thinking. I know you are trying to get those extra things done but just tell me you need to sleep and I will make sure you don’t get disturbed.
  4. Choose: don’t do it all. Let some things go. Choose what feels right for you. Make choices you can live with. We (the wives) may not always agree or understand your choices but you can escape us, at least for a while. You can’t escape yourself.
  5. Talk. Man, I don’t know how to stress this enough. Talk to your boss. Talk to us. And when talking to your wife: use simple language (especially at the beginning). We may look calm and rational on the outside but inside we are freaking out. We have no idea what we are doing and are scared. So don’t ask us to figure out what you mean, be obvious and clear. But don’t patronise us because then we will bite your head off. (Ah, there you go back to that rock and hard place)

 

Finally, why do I have the #HeForShe tag on this? Well, this post is also about feminism – the equality for both men and women. When we talk about babies and their illnesses, most of our thoughts go to the mothers and how they deal with it, what support they have. But what about the men? What support do they have? I hope this post highlights that we need to think about them too.

Breathe


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Invisible Scars

A year ago today I got the message.

Alone in my bed, late at night, crying in devastation at the loss. My mind and heart shying away from the awful truth, not wanting to accept it.

My brother-in-law found my nephew, his 17 year old son, hanging from a tree in their back garden.

I still can’t think of it without crying: that you were in so much pain, so taken by this terrible illness.

You have been irrevocably changed, unable to talk, unable to do so many things.

And we have all been changed too. Something inside of us has broken and will never get fixed. Not because of what you did, but because of your pain.

We may get on with our lives, laugh, make plans for the future, but this will always be there: that cut deep into our heart and soul. We miss you.

 

 

If you are affected by this in anyway, talk to someone. Tell them your reaction to this story, share your feelings, your thoughts.


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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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How to stop shouting at your kids: 1 simple rule

I have read many articles on this topic but have found one thing that you need to have in place for those tips to work. I discovered it after getting advise from a child psychologist.

About a year ago we asked a child psychologist for help. F had started to have tantrums. Major episodes of anger and sadness and we just couldn’t get through to her at all while it was going on.

Given the traumas in her past and the strict medicine routine that she is on, it was not surprising.

The psychologist talked to us and to her and gave us some things to try (we had already been doing some and had some new ideas).

Then she said this:

“next time she has a tantrum, record it so that I can see what she is doing.  And I can hear what you say and maybe give you some tips on how to respond”.

This was it. The moment of inspiration.

Yes, I hate my voice being recorded and really did not want to see what I looked like on film but it was something else. The thought of being observed, especially by a psychologist, that made me pause.

You see, it’s hard to keep calm, be patient, be neutral even, when you have a kid suddenly dive full on into a tantrum. They can have been annoying the hell out of you all day long and then launch into a fit and yet I’m supposed to stay calm, rational. I’m supposed to but I don’t always succeed.

So that pause told me something: that I was pretty sure that I was not helping the situation. I probably added fuel to the fire.

So I went home and thought about it. What if, in my interactions with my kids, I behaved as if someone was watching me?

Ever noticed, when you are at your mum’s or in-laws house and your kids start acting up, how much patience you have? Or when you are at the park? Oh, definitely now: when other mums are around?

I started noticing.

My tone of voice, my level of calm, my ability to bite my tongue and not join in the snarky-ness. These were all different when other people were around and when in the back of my mind I thought “if she kicks off, I’m going to be filmed as well as her”.

She never had such a big tantrum again. Yes she played up. Yes she got really angry. Yes she got really sad and cried and shouted.

But I did not.

So this is my conclusion:

There is no one more patient than a parent who is being watched. And a watched parent never shouts.

A Watched Parent Never Shouts