a pause in the purge

I've been browsing old entries, calmly deleting some of the saved but not posted, until I came across this one from that time back in the middle of last year that I talked about in my previous post.
Somehow I can't quite bring myself to delete it.  Not because I want to wallow in the misery and upset (although I do have a whiff of that about me I know), but because it supports me acknowledging how I feel now. Proud and happy about how much easier all the hard stuff feels with some support in place.

I often wonder how people less educated, tenacious, stubborn and knowledgeable get through this.  How they cope or achieve anything at all.  With science able to diagnose more and more intricate chromosomal conditions, there are thousands upon thousands of mums, cast out to sea with only panic for company.

So for whatever reason, I'm going to post this and square my circle.


the post was entitled Cast Adrift

or where oh where has my paediatrician gone?


CW lament (these are the initials of my wonderful respiratory specialist who got us our diagnosis.  The lament is that no sooner did the heart man sign us off, that our only trusted medical person started to prepare us for leaving, especially as we no longer had medical insurance and would have to shoulder the cost ourselves).
horrid iron supplement prescribed by mystery person (one of my many kidney trips to the hospital had us walking away with an iron supplement for low ferritin levels, which gave my boy the runs, but I had noone to tell so I just stopped and turned to google for nutritional advice instead).
urine samples flying round Barnet hospital (it really did take me hours on the phone and weeks waiting to get results, with each sample I sent, repeating myself ad infinitum with fear and frustration rising).
no apointments forthcoming (if you're a mum you don't get through the secretaries, so I didn't know when I was waiting and when I was being ignored).
noone knows who we are (see above)

and the rest kind of speaks for itself

noone can bring it all together bar me
not even his daddy - sometimes especially not his Daddy (sorry xx)

post it notes, big concertina files, blue book, red book, filofax, papers at bottom of bag, order but no order
and in the background, the man who got us our diagnosis and confirmed that our lives had changed for ever, is receding slowly into the distance
and there's noone willing to replace him
how am I expected to do it?
everything's changed but nothing has come in to help with the extra workload.
D new job so no time
no let up for me and I'm having to find more time when I don't think I was coping before
No insurance means lost respiratory specialist, noone else across my boy, who knows my boy, trusts my instincts 
and it's all back on my shoulders.

cor.  poor me then.  lucky me now
Hooray

xx

A can do person in a won't do system - but not alone

The first 8 words of this blog title were written and saved back in May last year.  Back when frustrations of being at sea in a system that I didn't know how to navigate were rife.  When fears of kidney problems through lack of information were overwhelming.  When thoughts of how to get my boy listened to and considered for a Statement of Special Needs were in my mind all but impossible to achieve.

As I write this now towards the end of the first month of January, I can see that much has changed.  The system in all its frustrations, lack of funding and incomprehensibility remains the same, but I no longer feel alone within it.

I sat at our genetics appointment yesterday lunchtime with the same doctor I've seen twice in the last few years, and felt protected and understood.  Ironically at a time when I really wasn't crying out to be.  Which  took me by surprise.

She looked at the latest letter from my NEW paediatrician (sorry but I am still quite excited about this) listing all my boy's problems and challenges old and new, working her way methodically through them.  Checking where each had got to, furrowed brow and open apologies that it's taken me 4 years to get what we should have had within months of my boy being born.  Expressing a frustration and regret that I've learnt to lock away because it's redundant and stops me being positive.

She opened the appointment saying how she'd been trying to explain to the med student observing all the complications of diagnosis (or lack of) during my pregnancy.  This was huge in itself because all that time ago it was the lab she's affiliated to that missed our diagnosis on the amnio.  Most people would ignore that, or not reveal to me that she still remembered it at least.  But she just took it as part of the history.

She returned to his still unexplained blueness on the list of issues, until she was happy that it hadn't been overlooked.  She again apologised that I've been doing so much alone for so long and I in return told her that of all the doctors I have encountered, she's the sole member of the group who is brilliant at apologising, even when she's not responsible for the things concerned.

She said "we" should be able to get him a statement because he has a chromosomal deletion, but again relaxed when I said I was happy in the hands of our hopeful new inclusion teacher at our hopeful new school.

She explained the new genetics tests to me, said she'd call with results and explained the possible things they'd find and how long it would take.  She looked at my boy and talked to him so kindly and was genuinely delighted at how successful he is so far.

Finally she came to see us in the queue for the blood tests and told me very earnestly that while she doesn't need to see us for 2 years, that I can call her for help or guidance whenever I need.

In short, she raced her way into my team.  A team that now includes an intelligent and excellent Educational Psychologist, a Paediatrician, a GP, and a few other specialists.  All of whom say how well he's doing, say they don't need to see him until I ask, but crucially know that this is just the beginning of the story and trust me to be their guide.

So when September comes and the community paediatrician and the keyworker step back, and possibly the physio and others follow suit, I now know I won't be alone again.

Even though I know I'm typing into a void here, generally unread, I love that I have this blog.  Here I don't seem to go into coping mode like I do the rest of the time, allowing tears to trickle and sighs to be heaved as I process my life as it happens.

Consolidation

I just had an urge to purge and have deleted the other blog I lead you to the other month.
I did it because I suddenly realised that the part of me who is trying my best should not be separate and this year for me, only 5 days in, seems to be leaning towards integration and consolidation. 

So I've joined together the Sara's and want to acknowledge that I'm Trying My Best most of the time, even when it seems like I'm doing my worst.

Happy New Year!

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.

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

Mmmmm
I can hardly wait

Perception

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

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.