Thursday, 30 December 2010

An update on our "team"

As we canter towards 2011 I want to  mark the following things.

Firstly that the NHS has been really really good to me this year and that finally my little man has:

A named paediatrician.  A clever, emotionally intelligent, efficient named paediatrician with a secretary that is good, a plan for when she's on maternity leave and an interest in 18p deletion.
A paediatric passport (that came in the post two days after we spent time at A&E on Boxing Day with suspected measles but still).
A raft of healthcare professionals that listen, advise, learn, help and are accessible.
And a mummy that knows a lot more about how to make it all work without getting too stressed.

So while life is still complicated, it's amazing to have the system giving us some of what we need to get on with it all without drama at every small hurdle.

With education, we have two more terms left at his really wonderful kindergarten and I've started to look forward with them about things that will help me with the school transition.  On that note we've done the forms for school entry and I feel calm and as if I know as much as I need to keep on top of it.  Having said that I have the plan in place for "if" it all ballses up like with his big brother (can't help preparing for the worst) and am ready to strip naked and chain myself to Big Ben if necessary this time.

We have the appointment in place for his new genetic testing so I can work my way back to neat and informed again.

I know and accept that I still overthink every rash and fever and also that I need to, but just as important is my D who balances me with careful (sometimes) scepticism.

I still think that when school does come around, that I'll have to be more than this very very part time mummy, but there's time to work out how to do that.

And there's so much more to really look at with regard to me, my stress, my coping mechanisms and how it might not be going quite as well as it should, but that's for another post.

So Happy New Year to all the people who help us to look after our family and thanks for restoring my shattered faith in the systems we have.

Thursday, 16 December 2010

Winding Down

It's a gradual process
This wind down to the end of the year
When my "time disorder" gets a little bit of a rest and I can look back knowing that this year took a whole year to get through
No matter how long the hours and days and months felt in my skewed perception
Or how confusing time continues to be for me in my busy happy challenging life
This year of 2010 will have taken 365 days to complete its journey.

My brain has already started sighing into quiet
I'm not even reading on the tube now
Just staring into space
Sometimes looking around and listening
Mainly just staring

So as I head towards my last day of work on Friday
ready to have two clear weeks of family time, me and my kids and my D
I'll get to be a happy mummy to bring this year to a close
Cramming our holiday with activities a plenty and some lovely big gaps of nothing for pyjama days and puzzles and drawing and films under a blanket

I can hardly wait

Thursday, 9 December 2010


I had an interesting dream that has really stuck in my head.

In it I was living in my first childhood home and the garden was a big old mess of overgrown grass, hedge, animal poo and on the whole a not very pleasant place.  In fact with an awake head on, I think it was a mix of the structure of my then lovely garden, coupled with the very real chaos and bramble of next door at that time which had a variety of hippy types living in it.

Back to the dream, aside from one bit where I was very upset to have to leave a kitten in the garden because everyone told me he'd be ok just left out there in the chaos on his own, my overriding sense was of being very frustrated.   The main cause of which was this huge mess and decay that I just couldn't see a way to make neat and tidy and fit into the idea of what I wanted the garden in my home to look like. I felt like my nerves were taut and that I couldn't find the tools or time to make it safe and clean and healthy and that I was a failure for not being able to do so.

Then later in the dream after a brief segue into another narrative genre, I returned to my theme of wanting to make things better.  Whoever I was talking to was engaging with me, so we went to the back room together to look at the situation.  When we reached it I saw that the garden was actually neat, calm, ordered and with healthy plants and veg and all the things I'd wanted.

Dreams are there to show us what our minds are processing, so it's no surprise that the whole neat/messy debate is here visualised having been the subject of funny emails with my C18 family with regard to the new genetic diagnosis that is hovering.

But I also think it's about perception.  In my head things are apt to feel messy and disordered, like I'm just not good enough at making it all work.  And yet when other people look in (and I know this is something that other "special" mummies recognise too) they see Super Sara, someone who can just get it all done and find time to fit in more. Like parent rep duties, joining committees, helping out.  It's another example of the "I don't know how you do it" syndrome. 

So what I need to think about is, are they seeing the real thing or am I?  Or is it not that simple...somewhere in the middle...or a constantly moving thing?

I love dreaming and I love deconstructing them when they're meaty enough, to try to find an impact that they can bring to my everyday. So I'm looking forward to untangling this more in those de-focussed times like my tube journey or in the queue for lunch

Thursday, 2 December 2010

Even More Special

A couple of times along the way, I've talked about how sometimes, all this genetic disorder stuff feels like my own dramatic construct.  It's partly as a result of being so alone through the pregnancy and until our diagnosis at 9 months; partly because of how successful my boy is; partly because every diagnosis he has, has come from me pointing doctors towards it; partly because I often mix up dreams and reality and partly because I work with words and stories and that's a natural place for my thinking.  My therapist says it's also a way for me to beat myself up, as I am often wont to do, picking away to try and find that I've somehow mucked it up.

Recently it's all felt like it's been working however.  The family around us finally not so scared, the family who weren't scared knowing even more through attending conferences and sharing in my updates from my registry chums.  We were even lucky enough to open our home to friends and families who genetically match our little boy.  Enjoying the emotion and non-virtual hugs, support, tears and laughter that ensued.

I'm even close to getting a paediatrician and as part of the process have been merrily selecting information to send.  Precipitated by my GP and the wonderful admin team there, helping me to feel like I almost have a team.  Which in turn helped me to pull from the "denial archive" some of the handouts I got at conference and look them square in the face, working out which will be helpful to my newly assembling team. So, there I am, being all efficient, when I decide to contact the impressive Dr Jannine Cody to find out if they've analysed our samples and added my boy to the pretty picture showing the break points.

In a wonderfully clear and supportive email back I hear something I am absolutely not expecting. That in his sample he almost definitely has a duplication from a whole different chromosome going on, alongside his already identified missing bit from his 18p arm. 

For reasons quite beyond me I am very fuzzy about how I feel about this.  It needs confirming so I'm already contacting the geneticist at GOSH who was so lovely and helpful all those years ago.  But I'm reeling a little because having thought I got it all, it now seems that there's even more to learn. Now I realise that this is what life is all about and especially as a parent of a "special" kid, constantly looking and learning whilst trying to relax into your normal everyday routine.

But I love neatness. 
I love knowing how to explain things, to myself and then the people beyond me. 
So for the first time in a few years, and I know this is all a bit previous as it's still unconfirmed, I feel quite confused again.

Not traumatised, or upset, or negative or depressed.....but, very patently and tangibly, confused.
At my own reaction, at the path ahead and as to whether anything, really, is any different at all.