Home sick

The last day in our York home.

There comes a time where you have to make decisions that are far more adult than you'd like, where a thread of circumstances starts to map out a path that you know in the long term is the best, but you don't want to walk it in the meantime.  I have so often spoke about the challenges faced having lupus and working full time,  having returned to work after having my daughter I began to face a whole new round of unfair expectations in my working life.  And so began the merry-go-round of having no option but to reduce hours, responsibility and pay, be exhausted and pay extortionate amounts of childcare all to ensure we were £400 better off than me NOT going back to work.
There's only so much you can blame Lupus for, yes perhaps things would have been different if I was a fit and healthy Mum, but it was time to stop making excuses, there was no possible way I could work full time with a child and a challenging illness, it was a struggle working part time.

Well, mummy

Well its been while, 

Who would have known that huge, expanding and wriggly belly was actually a real life human being? They don't tell you that do they? Not that I didn't know I was having a baby,  but associating this fascinating little creature I held in my arms to the tickling butterfly nudges and rolls that flourished in my tummy for so long, I  couldn't quite connect the dots. I suddenly have this beautiful little girl.. who's is she? Is she mine? Did I make her? How is that  possible?

  

The Greatest Act

'....Thursday 9th January 2014 ...This year may possibly be the year that everything starts to fall into place for us. The year we start to put foundations in place just for you.
I don't know who you are yet and when you will be here but know this as my first words that i ever speak to you, you are loved and wanted more than anything in the world.  With a tiny flicker of hope and with a little whisper of magic you may just be on your way as this year ends.' 
- Taken from 'My self indulgent lupus pregnancy diary'.

As the heartwarming, sentimental photos and testimonials of love and admiration for our Mum's ease from our Facebook and Instagram feeds, I am yet again feeling the significance of the changes that are occurring and the blessing that I too, all being well, will be celebrating Mother's day next year. But the catalyst for this post really being a message my sister sent me yesterday.

Great Expectations

July 2014

The first thoughts that spring to mind as I begin this post is my husband, you see, I havent forewarned him yet that i'm writing such a post.. and then of course is the thought that the subject is deeply personal, and a lot of people wouldn't even consider publishing such a private matter. But this blog was always designed to be brutally honest and talk about things that so many people like us are thinking and feeling but feeling like they are the only ones doing so. I consider it a moderate insight into our privacy, a sort of airing your clean instead of dirty laundry in public  The subject of course being the ever dominating topic of babies. I have talked openly before about our situation when it comes to having a family. But ever closer rolled the time where we made that scary joint trip to my consultant to talk through the options. With lupus a lot of pregnancies go head quite healthily and normally with additional supervision and support. But when you've had complications like mine, the process is complex and classed as high risk.
As the months have whizzed by this year, that moment seemed so very far away and not an inch closer, even with the date for the doctors appointment marked in my diary and visible with barely few flicks of a page, it seemed a million miles away and completely alien to us. But soon enough we were walking those hospital corridors and reminiscent of of Oliver Twist, were asking.. 'please sir, can we have a baby.'

Hair Raising Awareness

While i'm neglecting my blog writing, lupus advocate awareness duties for NanoWrimo this month I thought i'd quickly pop in and say hi and post the video of my husband Mark shaving off his beloved golden locks for Hibbs Lupus Trust here in the UK.  My husband loves his hair very much, third only to me and the cat and it's seen various formations over the thirteen years i've known and loved him (naw! i know) so a precursor to his epic head shaving (which raised over £300 by the way) a few hairy (or hurrry as Mark would like to say in his Lancashire tongue) pictures of Mark from over the years as an ode to his sacrifice.  Keep scrolling for the video!

An open letter to Lupus

Dear Lupus,

We've lived together for nearly five years now, our cohabitation uncompromising and you, the uninvited guest illegally squatting in my world, my safe haven.

For all those New! faces

A very good morning to everyone today.  I know it's unusual, me being such a busy and tired little lupie and all,  for you to find a blog post from me so soon.  There are a few simple reasons for this.