This is it

This is it.

That's what I've been thinking the last few days.  That this is it.  This is my life.  This is it.

It turns out I've been waiting this last decade or so, since losing our children, for things to get better.  For life to get better.  Turns out that isn't going to happen.  Turns out that this is it.

I'm really pissed.  I'm really angry.  I wish it was all different.  But it's not.  This is it.

I guess it really is a good thing you can't see what's going to happen in your life.

This is my life.  This is it.

And it's shit.

Empathy, or lack thereof

For quite some time, I've noticed that most people cannot empathise.

Empathy is defined in the Merriam-Webster online dictionary as:  "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also: the capacity for this."

Those who have lost children, like we have, will know that it is rare to meet someone who can truly empathise with you and your loss.  In fact, the only people I've met who can do so, are other loss parents.

It's been nearly 12 years since our first loss (Freyja) and still it shocks me how little people can or will show any empathy or make any effort to.

Having recently been diagnosed with MS has reminded me of this lack.

As with loss, when I mention I have MS, people are quick to immediately jump in and tell me about their friend and/or relative and/or neighbour and/or someone else who had MS and lived a "perfectly normal" life.  They feel that this is showing empathy.  They feel that this shows they know and understand.  Whereas of course it shows anything but.

My mother (typically) immediately reminded me that her biological mother had MS for most of her adult life (as if I needed reminding), so therefore she knew everything about MS.  This is despite the fact that my mother lived with her foster parents from age 5.  Also despite the fact that her biological mother died in the early 1970's.  But still, despite these issues, my mother knows everything about MS.  She knows all about the treatments available too (despite these not being available back then).  In addition, she had a friend, who very recently died, who had MS for many years and "lived a perfectly normal life".

In fact, my mother had nothing remotely sympathetic to say to me when I was diagnosed.  All I got from her was "well, you were expecting it".  That's it.  Not even a hug.  Not a sliver of empathy.  Nothing. Nada. Niks.

Even my MIL, who has shown more empathy than my mother has about my diagnosis, has been quick to point out that she has a friend (of course) who has lived a "perfectly normal life with MS" and has only recently started to have some minor issues.

There is such an incredible lack of understanding about this disease.  And yet it seems everyone is an expert.  The facts are that everyone diagnosed with MS is different.  Everyone's challenges with MS are different.  Some people do live fairly normal and lengthy lives, but others don't.  Others live with many challenges, and some live challenging and much shorter lives.

When I first mentioned to my sister that the MS diagnosis was a real possibility for me, she said "yes, Mum told me that you think you have MS".  I politely told her that actually a neurologist and radiologist thought I had MS.  I politely told her that they thought I had MS because of (i) symptoms which I had described to him, and (ii) evidence of demyelination shown on a MRI of my brain.  She seemed quite taken aback, and then told me that "Mum hadn't mentioned that".  It didn't surprise me that my mother hadn't mentioned that.  My mother knows everything about everything, including MS (because, after all, her biological mother had MS).  What did surprise me is that my sister took my mother's word as gospel without thinking to maybe check with me.  And, again, there was no empathy.  None.

I learned quite some time ago that people are all different.  The person we are at any one time is constantly changing and evolving.  As we experience different places, different persons, different cultures, different events, we become different people.

I guess the gift of empathy is one where we can look at all those differences and yet still be able to imagine and possibly understand what life must be like for someone else.  Someone who has totally different experiences to you.

The ability to imagine and understand without having experienced.

And that, I'm continuing to find, is quite rare.

You don't get over losing a daughter or a son.

There is no cure for MS.

Try to imagine that.

Pain

Since just before my MS diagnosis, I've been suffering from back pain.  Really, really bad back pain.  In fact, I don't recall ever feeling such pain before.  And it just won't go away.

The neurologist says it's MS.  He says most likely there's a lesion pressing or forming on my spine.  Even though my most recent MRI shows no lesions at all in my spine.

Lesions are what MS is all about.  Lesions forming on the brain or on the spine.

Of course there's no cure for MS, and so all treatment is aimed at stopping or slowing down the formation of new lesions.  My first MRI showed that I have a bunch of lesions in my brain and my second MRI (three months later) showed three new lesions.  That's bad, bad, bad.

But the pain is real.  And it's shit.  I hate it.  Yesterday I had a bad night.  Not much sleep.  Lots of pain.  I finally gave up and got out of bed to cry on Craig's shoulder.

It's shit.  I hate it.  MS sucks.  My life sucks.

And I found a study which indicates that parents who have suffered the sudden and unexpected loss of their children, are twice as likely to develop MS in the decade following their loss.  Guess what?  That's me.  Shit hey.

So because I'm (i) female, and (ii) spent my early childhood years growing up in northern Europe, and (iii) smoked as an adult, and (iv) had sudden and unexpected child losses, my chances of getting MS increased.  Who knew?

Life sucks.

Thank goodness my one great love never leaves me.  💖💖Craig 💖💖

Moments.

It's been a long time since I posted anything here.  But I'm finding the need to write again.

A week ago I was diagnosed with Multiple Sclerosis. 

I'm pretty devastated.  Every day I wake up and it's new in my mind.

Every day I think: why me?  I guess I should be used to thinking that.

What is it that causes shit to happen randomly to people?  Why is it that some people have more shit happen than others?  Why is it that some people walk their journey through life in some untouchable bubble, whilst others have nothing but bad luck?  I'd like to know.

My MS is pretty active.  I had my first MRI on 21 February and then my second on 21 May - three months apart.  The first MRI showed a whole bunch of lesions.  The second showed three new ones, and the old ones were still there.

We met with the neurologist who gave us the bad news.  The next day we met with a nurse consultant from the neurology team at the hospital who spoke to us about treatment options.  They are recommending an aggressive treatment.  We agreed.  I start next month.

So now I have to cross my fingers that the treatment works.  That the treatment will keep the lesions at bay, or, at least, slow them down. 

And, even though I've done this before, how the f*ck and I supposed to go through this again?  Where life changes in an instant?  That moment before the neurologist said "you have MS" and the moment after?  Like that moment before the sonographer said "there is no heartbeat" and the moment after?  That moment when you're peacefully sleeping and the next when you wake to find your child is dead?

These moments, they change our lives.

Not just my life, but also my husband's.

And yet other people, they just walk through life, in their bubble, with their living, healthy children, and complain about petty stuff.

These moments.

I nearly lost this blog today.

I'd tried to log on a few times, but couldn't, because I was getting the username, password or website address wrong.

It freaked me out a bit.  The idea that I would lose all that I had written.  The memories I wrote about.  The journey which is detailed on this blog.

Anyway, thank goodness I managed to get it sorted.  It's still here.  All those words.  All those memories.  That journey.

It's still here.


 

Sisters

I haven't been here for a while.  This blog has been silent.

I haven't had much to write, to share.

My life plods on.  Each day the same as the next.

:::

My sister and her husband and her three daughters are coming to this side of the world next month.  I'm looking forward to it.  But I'm also dreading it a bit.

My sister is happy with her life. Happy with her husband. Happy with her kids. Happy with everything really.  And I'm not.

My sister is a missionary. A fundamental christian. She believes her happiness and the happiness and health of her family, comes from god.  She believes that because she's a fundamental christian, because she believes in god, that god looks after them and gives them health and happiness.

I used to be a christian too.  But then my children died.  And I wondered where god was.

I don't know how my sister and her husband can believe in god, the god I used to believe in, the god who keeps people healthy and happy, when my three children are dead.

I don't know how my sister can believe in god, when her god performs miracles, when her god has a plan, when her god knows everything that happens, when her god is all powerful.  How can she believe?

Does she believe that my children are dead because somehow it's all part of god's plan?

I know she believes that my children are growing up in heaven.  I know because she's told me.  I hate it when she says so, because I know that is not the case.

Everything that she believes about god, which is everything that I used to believe, is false.

She believes that god hears prayers.  She believes that god answers prayers.  She believes that god ALWAYS hears and ALWAYS answers prayer.  She and her husband pray about everything, and wait for god's answer.

And yet when I prayed for Freyja, she died.  When I prayed for Kees, he died.  Hundreds, if not thousands, of people prayed for Kees, and yet he died.  I didn't pray for Jet, because I knew it was useless.

And my parents, and Craig's parents, who are all fundamental christians, they prayed for Freyja, for Kees, for Jet, and still they died.  God did not save my children.  The god to whom they prayed did nothing.  Although according to my parents and Craig's parents and my sister, god did hear, but his answer was just unclear to us.  Obviously the god who has planned every single thing in every single person's life, had already planned that my children would live and die as they did.  And prayer wasn't going to change that.

I stopped believing in god.  I know the day and time, down to the last minute, when I stopped believing in god.  It was when Craig and I held our son Kees in our arms and watched him die.  Watched him take his last breath.  Held him whilst his heart stopped beating.  I stopped believing then.

But my sister still believes.  She is still a missionary.  With a mission from god.  To tell as many people as possible about the power and love and kindness of god.  But I have seen none of that.  The god I believed in does not exist.

And this belief of hers, it gapes like a chasm between us.  She believes her happiness, her health, the health and happiness of her family, is due to god.  She honestly believes this.  And I used to believe it too.  Until my happiness was taken away.  Until my children were taken away.   And god did nothing to stop it.

:::

So there it is.

She will be in NL for 4 days.  She'll spend 2 days swanning around visiting all the relatives, who have jumped for joy at the news of her coming, and who are rushing to plan a "family-day" so that all who want can see her.  These are the same relatives who did nothing, said nothing, when my children died.  I will not be going with her to see the relatives.  I cannot pretend.  I cannot pretend about happiness which does not exist.  I cannot pretend I don't loathe the relatives who did nothing and said nothing.  I dislike hypocrisy intensely.

I'll have to walk on egg shells when she's here.

I'll have to put up with their prayers and "bless you's".

Maybe I'm not looking forward to it after all.

A bad mother.

I guess when other people think of us (if at all), they think of us with our three dead children, and that's it.  A couple, Craig & I, without children.

And much as I hate it, that is it.  The only children in our lives are dead.

Unlike other people who have had three children, we spend our time alone.  We don't complain about lack of sleep.  We don't plan child-friendly holidays.  We don't complain about naughty children.  We don't spend our money on clothes, shoes, etc.  We don't wait around for school holidays, and then complain our children are driving us mad.  No.  It's just us.

:::

FB is driving me mad again.

Nothing has changed.  It's still the same.  I just get more pissed some days than others about how parents of living children have nothing better to talk about than their children.  And they are so completely insensitive to others.  It is so amazing, that on a social network like FB, where the whole purpose is to connect with other people, it's so bloody obvious how selfish people are.

Someone recently put the following cartoon on FB, and I was horrified.  It was a baby-lost mum who posted it too.

I couldn't help myself.  In the comment section, I wrote "well, I must be a really, really bad mother than".  The BLM poster did not respond!  Unbelievably!!

And that's the crux of it really.

I've kept my FB page fairly de-cluttered of "pretend" friends.  Those people who I haven't heard from or seen for 20 years.

I want to be able to be myself on my FB page.  It is one of my primary social outlets.  I live on the other side of the world, in a country which is not (and never will be) my home.  All my old so-called friends have long deserted me.

I count on FB to give me contact with people who know what I've gone through, why I am the way I am.

But I've forgotten.  Or rather, my FB friends have forgotten.  They've forgotten what it's like to have only dead children - to the extent that that the cartoon above seems funny to them.  Ha.  Nearly all of them have living children now.  And the simple fact that their child/ren is/are alive means that they cannot know how we child-lost parents live our lives.  In fact, it is impossible for them to know, because the fact that they are parenting living children means that their paths have significantly differed from ours.

:::

I still want a living child.  Very simple fact.  Just because all my children died, doesn't mean that I have stopped wanting that.  Accepting that my 3 children are dead doesn't mean that I accept that I will never see a child of mine live longer than 7 weeks, go to school, read a book, ride a bike, and all the things that go with that.

Even though I'm 43 and 11 months old.  Even though my period seems to have disappeared and I have no idea where it's gone.

Craig wants us to have another child of our own.  A child with our genes.  A child which would face the same risks as our Freyja, Kees & Jet.  A child who might die for the same reasons our three did, whatever those reasons are.

Just because my children are all dead, doesn't mean I don't want another one.

Just because I know I can never have Freyja, Kees & Jet back, doesn't mean I don't want a fourth.