Since I started writing this blog I have had great feedback from fellow sufferers and just fellows that I know.  There has been concerned curiosity and growing awareness of the reality of my life.

That was my intention and I am grateful.  So why am I finding excuses not to write?

“I’m tired today, I’ll write tomorrow” or “I have to do the laundry”.  Really? The laundry?

What I have come to realise is that I too am becoming aware of the reality of my life.   It’s not the hardest life on this earth but it is hard.

There is a lot of worry and there is so much to do that I get tired just thinking about it.

Yet how did I not know this?  How was I not aware?  I’m writing about it aren’t I?

I put it down to practicality, self protection and normalcy.

Practicality.  It’s my favourite mindset and perspective.  I just get on and do.  I plan, I act, I adjust the plan when it goes wrong.  I share the workload when I can and just get on with doing.

Self protection.  It hurts to think of my daughter being ill.  It hurts deep in my bones, all the way to the soft squidgy marrow.  I don’t like to stay with the hurt so I don’t.  Have I dealt with the hurt?  Yes.  I have had therapy. I’ve contemplated life, the universe and everything.  I know the answer is 42.  But that is the old hurt.  Every now and then there is new hurt.  Experienced by me as I am today, the person I am now, at 37.  Not the me of age 31, when all this started.

I have examined my faith in god and how can such a thing exist in the world.   The only answer I have to that is this: it just does.

I don’t feel guilt.  It’s a genetic illness inherited when both parents happen to be carriers and then only if the both sides pass on the mutated gene (25% chance of that, by the way).  It’s not my fault.

I don’t feel anger at god, at the world or at my husband for daring to carry the same defect as me.

I don’t dwell on how this could happen.  It is.

But there is nothing in this world that will make me feel ok with either of my children being in pain.  I’m not ok with it.  So I move away from it in self protection and for something more.  There is so much more in my life that I do not need to stay here.  It’s just a place to visit.

Normalcy.  This is normal for me.  Medicines, hospitals, constant monitoring for signs of an impending catastrophe.  This has been a dominant part of my life for 6 years so it is just “my life”.

Who thinks about the small details of their lives?

Well, a blog writer does.  So I guess you could say I have been hoist by my own petard.

(I just need to add that I love this phrase!  I have done ever since I first heard it as a child and now I finally get to use it.  Hmm, maybe I should have fallen in love with the phrase “richer than creosus”?)

Writing this post has brought me to this realisation: it’s not until we take a step back from our lives that we actually see what are lives are like.  You can’t see the wood for the trees.  So I invite you to join me and take a step back and look.

What do you see?

I see that my life may be hard, but it is also beautiful.  Deep down, I didn’t just want to share, I also wanted something for myself.   To see this:

Sometimes the beauty of my life is cold and bright like a crisp, sunny winters morning.

Sometimes that beauty is warm and comforting like a hot water bottle and a blanket.

And sometimes, that beauty is rough like a storm that buffets me around, battering at me, until finally it stops and in that calm there is satisfaction in knowing that I held on.  I am still here.  My life is beautiful.