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

Mmmmm
I can hardly wait

Thursday, 9 December 2010

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

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.

Tuesday, 30 November 2010

My Sore Eyes And Sis

I'm really quite happy with this recently invented title for my post, much happier than I am charting the gradual spread of rashes defecting from my eyelids and a few on my left leg, to covering both of my arms and threatening further border crossings.  Is it possible to give yourself Psoriasis?

My eyes are still sore too but I've kind of run out of creams that don't sting or give me hives or that scare me by their side effects.  So I'm going back to the doctor this week with a bagful of creams that don't work and a request for help.  I'm also going to try with the hive cream again, just to check (while not home alone this time) that it really did give me that reaction.

The general thinking on the cause of all this is that it's all to do with stress, which is probably true, but I've been so much more positive in my head about various stressful situations that I'll be quite disappointed if I'm that unconnected to myself as to not know what I'm causing to break through the positive sheen.

What is more important for me right now is to keep lots of lots of positive thoughts flying through the air all the way to New Zealand for my big sis who is back in hospital for an operation.  She is one of my favourite and most precious people in the world to me and I need her to get properly well so she can keep cultivating her house and farm for when I finally give in and cart us all over to live there to escape armageddon.

This one's for you Maccy, hives and all
xxx

Tuesday, 16 November 2010

pssssssssssssssst

Just a little whisper

About an imperceptible release of pressure

A chunk of the cork at the neck of the pent up chaos and stress bottle, that seems to have wiggled its way free

The result of which has led me to a blog I started back in 2007
Over there, during what I now know was the most stressful year of last decade and my life so far, the person creating that blog and profile was trying to rise above it all.

It's a different me but another part of me all at the same time.

have a great day xx

Tuesday, 2 November 2010

Messages, signs, guidance

To find yourself staring at your computer screen and typing Help into Google isn't necessarily a good sign. Nor were the aches and pains and head spins of this afternoon. So unfortunately, despite a lovely lunch with some lovely people, today wasn't going down as a day of note.

I left work trying not to spread my gloom, walked to the tube as usual, arriving to find my travel card had disappeared along the way, which made the anxiety levels shoot up a bit further.

As I hurriedly retraced my steps, calling the nanny to tell of my delay, I half noticed the relaxed girl with the water bottle, chatting to her friend and waving a distinctive, but common, blue Oyster card holder as she passed on her way into the station.

Brushing that off and rushing on by, all the way back to the office and then all the way back to the tube again, eyes down, still no sign of it.

Made a connection with the nice guard at Tottenham Court Rd station who told me what to do now it had gone.

I joined the long long queue of people trying to buy tickets at the two working machines at the peak of rush hour in a busy station. Trying trying not to cry or find a way to use this as justification of things being crappy.

I jumped out of the queue in indecision and a momentary loss of focus, then tried immediately to pop my way back in and convince the earphoned iphone reading man who had been standing behind me for 5 minutes that I wasn't just being cheeky.

Then all of a sudden the nice station guy called my name along the line, saw my thankful face as he held out my travel wallet saying to me "this is your lucky day".

As I hurried down the empty spiral staircase, travel card in hand, away from the rush hour throng, I cried quietly as I went, wondering
"Is it really?"
and trying to work out what, if anything, that last 15 minutes was trying to tell me.

I've got as far as a lesson in perspective, peripheral vision and keeping an open mind. All of which has made me feel significantly better writing this than I did a few hours ago.

Thursday, 28 October 2010

If The Eyes are a Window to the Soul...

...then apparently mine is a bit fogged up right now.

You see I would say I'm pretty good at stress, I've learnt to recognise it, feel it, acknowledge it...all of that stuff. I try to think about the effect it will have on my body, my relationships, my functioning generally as a nice and normal human being, mum, wife, sister, friend. In fact most people tell me I rarely seem stressed to them. You know the ..."I don't know how you cope" kind of comments.

Recently I've had a bit of stress from a parallel street in the map of my life, and for some reason my body seems to be taking the brunt. I have developed a strange skin thing around my eyes that on a bad day means I look like the Singing Detective, and on a good simply that I've aged 15 years in under a month.

My take on it all is that "I'm fine but my eyes are clearly very stressed", but it does make me quietly think that I might not be in tune with what lies beneath.

So when my eyelids swelled up after daring to wear a bit of mascara, I finally went to the doctor to get it seen to. She and her student went "OH!?!?!" when I took off my glasses which I later laughed about, continuing to joke my way through.

I used the cream she prescribed, which staved off having to don a pirate patch that evening at the posh and very fun Asian Awards that I was going to in support of my sister in law.

The cream seemed to work after just one day's application and as I stood in the mirror the following morning to assess the damage, I looked down to see an enormous hive on my forearm.

I've since found another patch or two of strange rashes dotted around and have duly informed my doctor (just as the scary side effects bit of the instructions on the cream told me to.....EXTREMELY RARE, IF YOU GET HIVES CALL YOUR DOCTOR OR GO TO A&E, DO NOT PASS GO, and don't worry if you call your doctor but they don't bother to ring you back...)

So the cream goes into the fridge and the eyes are deciding what to do now. In the meantime I've developed an ulcer at the side of my mouth which feels like my lip is protruding (although actually it's not) and this morning my neck and shoulder seems to have gone into a spasm, not to be missing out on the fun.

I'm thinking therefore, that perhaps I'm not so good at stress after all.

Ok body, I'm listening, now just tell me what to do about it.

Monday, 18 October 2010

in place of posting anew

...I'm putting in a link to a post I did on a dear friend and fellow 18p- mommy's AMAZING new website - although right now the link doesn't entirely seem to be working.

The website is called Different Iz Good and it's part of Camilla Downs' efforts to make the world a better place. So please go and look at what she's doing and think about how you can join in, sign up and spread the word.


http://differentizgood.org

In case the link is broken again once I log off, go to http://differentizgood.org - there's some great stuff on there - and my little old post is entitled Musings from 4th October.

I'll be back here soon with updates following my busy few weeks of family, fun, smiles, laughs, tears, stress and more.

Happy Monday to you all
x

Tuesday, 28 September 2010

Having Said That - The Light Version

To balance the commuter-fury post, here is where I force myself to flip the Having Said That rule:

I do wonder how this fragmented life affects my children...having said that when I watch them playing in their room, squeezing me on our hello and goodbye's each day, and knowing that they sleep soundly in their beds at night...I know that if I'm fine, then they are too.

I wonder what kind of effect this continual fire fighting or latent stress is having on me and my health...having said that, I trust that I will tune in and listen to my body in time to catch anything brewing.

I wonder if the various balances that feel lop-sided are ever going to level out...having said that I have to trust the day to day. I have to know that I can only try to do everything to the best that I can. And I'm pretty sure that I do.

I wonder if I am missing all the good stuff while I float and flap my way through this life...Having said that I know what's good, I can taste and feel all that is beautiful around me and I do live in the moment. So recall of those moments is not as important as feeling them as they happen.

Deep breath
Balance attempted and partly achieved
Have a great day

Having Said That - The Dark Version

Last week, running running through my head as I sat on the tube, swearing inwardly in a non-zen state at the shambles that was my journey home, was the phrase Having Said That.
Here's what I wrote to distract me from my journey:

Said to fellow passenger "I'm not going to complain"...having said that how the ** can they make me wait 15 minutes for a High Barnet train then change the destination at the last moment forcing me to squash and push just to get on a train that won't get me home to my kids.

Said to various people in response to how do you do it, "well you know, I tend to cope pretty well"... Having said that I have found myself increasingly less zen and relaxed recently, leg jiggling at a furious rate at all times of the day and night.

Said on former blog post " I'm clearing head space one drawer at a time"...having said that no sooner do I clear them than I seem to overfill them again and the trees go back to obscuring and obliterating the wood.

Said to myself "that I have perspective and don't sweat the small stuff"...having said that, today I seem to be filled with what feels like murderous rage at the inflexible money grabbing of Virgin Trains and the inefficient shitness of the Victoria and Northern lines at rush hour. I have become that frowning muttering commuter.

And said quietly in my head when it all feels too much, "I can cope, I CAN cope"...having said that sometimes, like now during these moaning tube-written, travel-fury propelled thoughts and words...I don't always feel that I can.

Having said that...this hastily typed blog, in the corner of a packed tube carriage, finally safely on the way to pick up my big boy in the nick of time, finally with a seat, a bit of air and a tube that's bound for home, gave me some much needed perspective...and I guess things are not as bad as they felt 15 minutes ago.

Tuesday, 14 September 2010

Fancy a Game of Au Pair Roulette?

I'm a thoughtful type, but most of the thinking gets stored on post-it pads that get turned into to do lists and disappear under scratched out lines, or they melt into my eyelids as I drift off into sleep each night, never to reach conscious fruition.
Three weeks on from my last post and I realise that I've been away from the computer not due to "can't cope, can't write" but "can cope and am too busy to write".
Busy controlling the barely concealed chaos I've been living in for the last few years.

As a full time working mum I've written before about living my life by remote control. In emotional terms that means putting a huge amount of faith in the girls that come to join my family and help me out by looking after my kids pre and post school each day. It's a lottery because you can trust your wonderful agency who provides the girls, and you can give them all they need, but you can't legislate for who they are, what they want and whether the chemistry is there.
I've been very lucky over the years and have put in a lot of time trying to integrate anyone who looks after my precious boys into our family. Just like Martine and other au pairs from my childhood, who held a very special place in my heart and still do.

This year for many reasons the game roulette seemed to symbolise this area of my life. My kids were happy, well fed and looked after, but I didn't realise (or wouldn't let myself see) until a change came, that that's where it ended.

Then a month ago a bright energy entered my house, and family, and through her enthusiasm, conscientious nature and essentially who she is, I'm drawer by drawer, cupboard by cupboard, room by room, sorting out the chaos I thought was just part of life.
Sorting the things that people don't see. The things that would help those friends who say "I don't know how you do it" that I make a hash of it just like we all do sometimes.

So as I head towards a ridiculously busy 6 weeks with visits from my darling sister and family, batmitzvahs, weddings, home alone time while D travels with work, appointments, work and life itself, I feel like I can do it without too many knots in my tummy.

Each morning I am getting great pleasure in getting things out of my very neat, very ordered, bathroom cupboard.
Each evening I am grinning as I open my computer in my new office/spare room, and look at the empty cupboards thinking what I can put where in this slow, calm, happy organisation of my life.

page by page
drawer by drawer
room by room
minute by minute

I'm trying to live and smile
I'm trying to enjoy small triumphs
I'm trying to grin and eat those little doughnuts along the path towards the big creamy cake of hope and ambition that I sometimes allow myself to dream of.

Tuesday, 17 August 2010

The C18 European Conference

I've been thinking about writing this post since before going to the Conference which took place in Glasgow over the weekend of July 30th.

Having got myself Mum and L there, experienced it, come away, gone immediately on our family holiday, come back, immediately settled in my new childcare, immediately returned to work, immediately waved goodbye to hubby on his business trip.....I'm still thinking about it.

So here I am deciding to write it instead.

With reference to the title of my blog and those of you who read some of the posts here, it won't come as a surprise to know that I was quite scared of getting overwhelmed by the whole thing.

Overwhelmed at being in a room with all these people who know what my life is like having never met me. Who know what my son is like having never met him. Who exist, in glorious technicolour and with moving parts, not as virtual email, facebook or blog friends. Who have children older than my little man, perhaps sicker than my little man who therefore open doors in my head that I am so very good at keeping gently closed.

I often talk about living a lonely life being the only person I know in my surroundings who has the elements I have in my day to day. But there is secretly and psychologically a comfort in that, because if it's in my head, it won't be judged and maybe it won't hurt as much or sound needy or ungrateful or dramatic.

So to finally come face to face with actual people who know where I'm coming from, have as I now know way way more challenges than us so far with my lucky miraculous little boy...was and is kind of HUGE for me. Even as I type, force myself to think and write, I feel a bit wobbly.

And Yet.

The experience was amazing. The people were amazing. All the things I feared happened and even they were amazing. The organisers were tireless and smilingly amazing (Bonnie, Chris, Alistair and all). The superstar Drs Hale and Cody and all the contents of their brain that they so generously shared were amazing. The wonderful Rick Guidiotti and his energy and light, the mums, the dads, the kids, the grandparents, the siblings...all amazing.

I was and am still struck by the lack of judgement of any child's behaviour or appearance that weekend. The kindness and warmth and emotional intelligence that filled the rooms we inhabited. The worry and the honesty and the advice that people shared. The smiles and hugs and welcomes. The guest speakers. The sneaky look at the name badges and the not so sneaky "I'm a p, what are you?" people like me.

I know I'll be absorbing the experience slowly from now on and that I have got to find time to let out the emotional response that I'm gently pushing down. And those are the emotions of entering a home that you kind of wish you hadn't bought, are still slightly in denial about all the cracks in the walls, and yet feel terribly terribly lucky to have found.

I described my weekend to some friends and my sister as overwhelming, wonderful, sad and happy and very hard all at the same time. I found it very humbling to see how challenging some people's parenting is with the medical issues that their kids combat daily. I can't find the verb to describe my own feelings as mother of my boy. My boy who walks, talks, runs, plays, breathes, eats...and does so on the whole looking and acting as a typical nearly 4 year old.

My challenges however were crystallised. I have to garner the strength to keep knocking on doors and keep checking that the challenges he has are still moderate and tolerable. That the problems we know are out there for our kids are not finding their way into him. Dr Hale said a sentence that I want to carry in my wallet, medical file and heart. If you don't check, you won't know if something is normal or not.

So on I must go. Back into fighting the system to insist they find me a paediatrician or the kind of GP we need. To insist they keep me on their books even when the annual check is unchanged. To insist on even getting the annual check in the areas we need in absence of any big signposts telling them they should do one. To keep finding ways for them to take seriously my maternal instincts, C18's research and my opinion of the kind of care my child needs.

And to keep looking beneath the curls and smiles and magic of my boy and join us in our proactive, stubborn, positive and super informed approach to him, all he is and all he can be.

Thank you Bonnie, thank you Drs Hale and Cody, thank you Denise, Kristen, Katharine, Rick, thank you mummy for being my calming rock, thank you L for being my super boy.

I will fundraise for this for as long as it needs me.
I am proud to be adding our records and DNA to the scientific study and of all the good it can do.
I am shallow enough to want to be a proxy member of the Italian contingent who looked so stylish and beautiful that they rendered me quite mute. But I am able to balance that with a deeper admiration that they attended with their therapists and carers to learn alongside the affected families.

So onwards to 2012 and may all the days in between be happy.

Thursday, 12 August 2010

lots and lots of time gone by

I'm breaking a blogging silence that seems to have crept up on me.

I think it all got a bit too much and I went into coping turtle mode with work home work home chores work home....you get the picture.

I'm just back from a very much needed 9 day day holiday and am at the end of a very promising day 1 of a smiley happy new au pair living in my house. Today I got L's first neuro test out of the way and with friends and old nannies around to help the new childcare, I am ready to go back to work tomorrow without a feeling of dread.

I have also been to my first C18 conference and survived without getting too overwhelmed and indeed genuinely enjoying myself. It was a all a bit of a kick bollock scramble getting to conference and then going away on holiday less than 12 hours after returning, but I am slowly absorbing all I saw and heard there.

Lots has happened since I last posted, not that I can really remember when that was without looking(possibly even before the kidney appointment in June which rattled on a little...more about that another time) but I will endeavour to look back, dig in and come back here with anything worth saying.

What I do know...before I pop off, is that I've now read two Diana Athill books and I'm even more excited about her than I was in my post

So as I tentatively type this and retread this neural confessional pathway, it's nice to be back.

Thursday, 1 July 2010

Inspired

I watched a TV programme about Diana Athill on the eve of my 38th birthday, and found myself inspired and thoughtful.

This wonderful old woman with a career as an editor, and views as a human being, really stuck and I had her buzzing around my head right up until I went to sleep.

I love how she dedicated her time to editing and nurturing for most of her career and then only late in life found her own voice and wove beautiful patterns with it.

To put it crudely, it's like she's foreshadowed all this blogging. She chose to write about her life when it wasn't the done thing, making a point of not editing herself in order to be truthful and frank. She put it out there for people to judge or accept and then walked away, knowing her part was done.

A comment that Jean Rhys said also chimed with me, and was echoed by Diana herself:
"When you write about a thing you forget it...or least it doesn't worry you anymore"

That's how I feel about my blog and when I come here, I do so for many reasons.

To show a little to my friends to explain what I don't communicate effectively in real life. To help anyone who might stumble upon my words, who has the same challenges as a parent of a not-so ordinary child. To simply write and write. And to force myself to look at the things inside me - sometimes to find a positive spin, sometimes just to write and purge and move on.

Following the TV show I ordered books and books that were referred to, some by Diana, some by authors that she edited. I'm excited about returning to books and the passion that I had right through my education and beyond for them, which in recent years and through my career has been overshadowed by the scripts and treatments that litter my desk.

So the next few months are going to be rich with words and ideas and stories from another place, and I know I'll dip back into Diana's head as long as she continues to throw the words out there.

You might want to take a look too http://www.guardian.co.uk/books/diana-athill

Tuesday, 22 June 2010

that extra cuddle

I was away at the weekend with my University girlfriends, the 10th time we have had a weekend away together. Once I work out how to put some of my photos from my spangly new camera up here, I'll write some more about remembering how important my friends are. How easy it is in our busy lives to forget that they are there, arms open, and that it's dangerous to isolate yourself as I tend to do.

The boys were a bit unsettled when I came back, despite having had a lovely time with Daddy and Grandparents and all.

Tonight at bedtime however, I got to see a little more of the wobble. We did the usual bedtime routine, with me, as often happens, becoming "mean Mummy" and a bit stern in order to get everyone to calm down. We had our nice stories and cuddles as usual and I went downstairs.

About 5 minutes later J came down the stairs looking heartbroken saying I hadn't lain with him for long enough and that I had with L. Instead of getting impatient as on another more tiring day I might, I gently led him back up the stairs and lay down for a cuddle.

Because I like to talk openly with my kids, especially this big sensitive "wiser than his years" boy, I asked if he'd missed me at the weekend and he nodded and squeezed me tighter. I also asked who he thought got more Mummy time, him or Louis. And for this the thumb popped out and he said immediately and with conviction his brother's name. When I asked him when L got this Mummy time, it took a while to come out but I knew I needed him to feel he could say it. "When you go to the hospital". I said I understood, but that he needed to know that it wasn't fun when we went to the hospital most of the time, although my job was to make it as nice as can be. I said that L got poked and prodded and had to be really patient while we waited around and that we had a nice time, but that it wasn't special. Not that L found it upsetting though, as I gestured to his little brother and we giggled at the fact that as usual he was singing away in a silly voice in his own pre-sleep routine.

I told J I understood how he felt, but that here I was giving him a huge long cuddle because I want him to feel special too. That mummy loves both her boys and tries to share herself, but also that going to the hospital together isn't a choice, it's just part and parcel of his condition. Which is unfair for everyone.

I know I succeeded in letting him be honest and not feel guilty about feeling how he felt, although it hurt my heart a bit for how he wrestled with himself before saying it.

Instead of feeling the burden of how to make sure this sibling of a special brother is ok, I can see that each of my boys needs something different from their Mummy, and I have to work out what that is and listen to my instincts. With L sometimes it comes more easily because he's a child where he's either happy or sad, cross or calm, scared or confident. Also because me and him have our own bubble in how we deal with the hospital and illness stuff and it works and evolves with each visit. With J I have a little boy for whom you have to gently coax up the emotions all the way up from his toes

Tonight all it needed was an extra cuddle, and in the grand scheme of things, that felt really lovely.

Thursday, 17 June 2010

Pre-Weekend Thoughts

It's been an interesting week.

I've been a bit fractious, a bit happy, a bit stressed and a bit calm and right now I feel pretty good.

I'm proud that me and D chose to air grievances and sticky things over dinner and manage to get it all said, discussed and end up giggling by the end of the evening.

I'm glad that on Friday I have chosen to take the day off and wind my way in a relaxed fashion to the 10th Annual Girl's Weekend.

I'm glad that I finally decided to buy myself a digital SLR camera as a present and reward for working hard and trying to be all that I can be.

I'm very grateful for some kindness and wisdom found at work this week. I know how lucky I am to have my job and be able to work as I do while my little man is well enough and "typical" enough to cope without me. I want to embrace this while I can.

I've also been doing lots of deep breathing and trying to look inside myself and limit any damage that the stresses of my life might be causing. I am looking forward to getting better at this.

And I had an amazing session with N where I made a comment that was so visual and clear that I said I wished I could draw it. So out came the paper and chalks and that's just what I did. It felt amazing. I can't wait to talk more next week about whatever it is I drew there.

I have been thinking too this week about my virtual life and my real life and how to marry the two, the differences in them and how I present myself. It comes off the back of comments from one of my 18p- buddies and has really set me thinking.

Many of us feel the same confused gratitude for these strangers online who play such a huge role in our lives. But when the promise of a 3D intervention occurs, like the upcoming conferences, or photographs on facebook and blogs like this that look deeper in, it does take a while to level it all out.

Living a virtual life in place of your own is not healthy. Humans are meant to interact, hug, look, see and love. But for me, here on this blog and more so with the 18p- listserve, I am aware of the boundaries that being on email crosses. Race, class, education, income, culture, geography, religion, politics. On there some of that skims by but none of it matters.
Not one bit.
And that's an amazing thing.

Sunday, 13 June 2010

Little Bit Low But Need to Break the Blogging Silence

it's hard to write when I'm feeling up against it. To spend time putting the negative thoughts and moods into words and making them real.

I've been home alone this week while D was on yet another business trip. I'm tired and kind of feeling ill and anxious and letting all kinds of things get on top of me. I'm trying not to make the casualties of this busy life always be the nice stuff. Watching the swimming lesson, playing with the kids rather than half focussing while doing chores. But also I want to keep doing my job well and make sure I don't let anyone down. It's the same old cry for any working mum I know.

So while I sit here in a bit of a blur, not entirely sure of where my head is or what really the problem is, I am quite sure that I haven't been a very nice or satisfying mummy, or friend, or colleague, or daughter or sister or wife for a few days. I also find that when I feel like this, my virtual life exceeds the expectations and realities of my actual life, and that can't be a good thing...can it?

Which is why I want to say a couple of things.

A "goodbye" to a wonderful old lady called Tilly who welcomed me as if she were my own granny, loved my kids and cared about their happiness, led a long and amazing life and will be sorely missed.

A "phew" that my sister is at home recovering from her operation, and a hope that she clears the infection and gets back to being my happy healthy worry-free big sister again soon

A "thank you" to a friend who tonight sang and entertained a generous group of people in a local methodist church and chose to give the proceedings to the C18 Europe gang.

A "sorry", in fact lots of "sorries". To my boys who've had grumpy mummy strung out a bit more this week than they should. To L who got a bit of frustration from me, partly due to lack of patience with the frequent accidents this weekend, but also as a result of a tough hospital day on Friday catching up on me. To my husband who came in jetlagged tonight, saw me for 10 minutes or so before I ran out to said musical charity evening, and is now snoring in bed with the football blaring. It's nice to have you home, I'm looking forward to a quiet week together.

Some more "thank you's". To my Marble friend, for sharing her excitement and giving me hope, helping me to have something really fulfilling that is rare in how I welcome finding the time to give to it. To my neighbour for cutting the hedge for me and letting my boys clear up all the leaves. It was a gorgeous snatched 45 minutes of neighbourly fun while we waited for my uncle and aunt to pick us up for a lovely dinner at my brother and sis in law's house. To my beautiful blonde friend for the phone call the other night bridging north and south London with a glass of wine and long vent of shared frustrations, for my other gorgeous super stylish friend for drinking and helping to share the stuff that can't be said with just anyone. for my in-laws collectively and a happy meal that cleared my mind and filled my boys' tummies last night. For anyone who's been nice to me that I've forgotten to mention.

A quick medical update - unforgivably lumped at the end here. We were looking again at whether L's spinal curve was progressive, so on Friday went back for an xray and found it looking ok, so another reprieve for half a year or so. But on the back of a good long consultation, I'm now waiting for a neuro-muscular referral to see about the toe-walking, had an ultrasound on a lump on his knee which, surprise surprise, they'd never seen before so could only say was a veinal malformation, but thought it looked fine and we should just keep an eye on it. We have our kidney appointment on 23rd and I'm trying to keep my mind off that until I get there. I am however allowing myself to note down the odd pattern of his wees today (which I know intimately I can tell you!!!!!!!) and which will lead me to do a bit of further searching before I find myself in front of the renal team.

I look forward to a week of feeling calmer and more able to cope.

Sunday, 6 June 2010

A Week Full of Progress

After an overly emotional post last time, here's one full of fun and progress.
This week with a lot of hard work and patience, my lovely little boy has taken his first steps towards toilet training and we are confirmed in phase two, training pants.
We smile when there's an accident, we find lots of ways to cajole him to go every hour without making him want to slap us from nagging exhaustion, and as yet have not resorted to treats or star charts.
As parents of these magic little kids, any progress is good and I guess we develop the attitude that instead of planning and worrying how long this phase will be, however long it is, is however long it takes. So I'm ready to have spare clothes in my bag and a patient smile on my face for 2 years, as long as I get to see his pride at his lovely colourful big boy pants and when he manages to get a result where it should be.
The second bit of progress is a big high five for Daddy and his utter stubbornness on something that I was ready to find ways around. Because of a little low muscle tone it's been really hard for L to pedal, and no matter how much J and all of us tried to get that right leg down, it didn't seem to come. So I started to look at balance bikes and a way of having him off his cute but now babyish looking toy motorbike (kindly lent by special friends). I was all ready to remove the pedals and stabilisers from his big cousin's happy hand me down, on the advice of the bike shop, when Daddy got all quietly male about it and muttered how he was sure we were pretty close.
We had one slightly fractious try the other weekend and a reminder that getting frustrated was so not going to do it.
Then this morning while I mindlessly did some domestic tasks and relaxed in a Sunday morning kind of way (ironing, it seems, is not as devilish and awful as I have always thought!) Daddy and boys played in the garden.
I suddenly got called out by big bro saying I "had to come and see this now" and went to the garden to find L pedalling. With both feet. In a continuous motion.
I was so shocked, and so happy to be shocked, I yelped and heaped praise on them all.
I went to find them all in the park after the ironing and I'd finished my chat with my lovely old friend on the phone, and stood at the gate looking for my brood.
My heart plipped a bit as I saw J speeding around on his bike with his helmet, and peddling furiously behind him, with Daddy stooped over pushing him up the incline, was my super boy.
He proudly showed me how he could pull the brakes too (in fact J was the one who showed me) and shoved my hand away when I tried to give him a gentle push, wanting to do it himself.
Awesome and magical and a joy to write about.
I'm smiling as I type and as soon as I'm done, I'm going to watch the video again that I took on my phone.

Friday, 4 June 2010

3 Years...

This day, June 4th, is the answer to the question of why this week I can't keep more than one day and a few hours in my head at any time. I keep looking at the diary, trying to engage with what comes next, who I have to think about, what we're doing at the weekend, what work I have to do...yet all I can think about is now...
or more accurately...then,
Because June 4th 2010 is the third anniversary of L's diagnosis.
So bear with me, as I try to think back to then and now and a little of the inbetween.

I remember sitting in that waiting room at the Royal Free Hospital with my little 9 month old rattling wheezing smiling boy, with a calm expression painted on my face. Like a swan, serene outside, paddling furiously underneath, I knew that all I'd suspected for the last 18 months was about to be faced.

My first clue was the woman behind the counter showing recognition when I signed us in.
Now if there's one thing I wasn't used to back then, was anyone remembering who I was and why I was there. I'd spent 9 months of pregnancy repeating myself, 9 months of his little life fighting the label neurotic mother in and out of hospital, repeating myself. So to be recognised and have the imperceptible head tilt and smile from the usually grumpy receptionist, was SO not a good sign.
In fact every doctor or nurse who walked past in those waiting moments seemed to look and smile and rush on through the corridor, noticing us.
Alone in my head I began to feel proud and feisty that I was right, and quite sick about it too. And I became aware of the chant going round and round "please don't let me be right, please don't let this be real"

The kind paediatrician called us in, sat me down and delivered the diagnosis of Monosomy 18p, but then the sting. That it was so rare she couldn't tell me anything about it. That they'd arrange some tests so to watch out for appointments and that we should go to see the geneticists at Great Ormond Street in a few weeks.
A few weeks!!!
A life changing diagnosis and I was supposed to sit still until then. I could barely breathe my way through each second.
So we contacted a private geneticist and went to see him very quickly. He was kind, took blood, wanted to see for himself and told us whatever he could. Eventually we got to our appointment at Great Ormond Street with the very nice geneticist and she talked a little, confessed how little she could tell us, asked if we would let her see L sporadically to keep on top of his progress. And she apologised. Above all she apologised for their having missed finding this during my pregnancy.
And we returned to Dr W, the only medical person we trusted and unbeknown at the time, secured him as shepherd through the first three vital years.
It's all a bit of a blur but some things punch through.

I remember calling my therapist and saying "you know I said I might be back one day...well I think that day is now"
I remember the pain of telling if not the telling itself
I remember the pain of the wrong reactions if not the reactions themselves
I remember the pain of not knowing what my Daddy would have thought.
I remember how exhausted I was by this lonely journey, and the realisation that I now had to shepherd all our families at the start of theirs.
I remember my rage at the denial that 3 years on is still present in some places
I remember sitting at the bottom of the stairs crying and trying not to let J see me
I remember his anger, his rage, soaking up all of our emotions
I remember paying for medical notes, getting them and reading them, contacting lawyers and deciding whether to sue them for the mistakes we found there.
I remember knowing I couldn't do that because that would mean agreeing with the phrase "wrongful birth"
I remember how the rearrangement of my own DNA felt, I still feel it.
I remember all this and yet I remember nothing.
I feel how much has happened in these three years and yet time has no meaning at all.
I miss the comfort of the past, and the naive boundless hope of the future, but I can now embrace the present.
The present as it stands right now. My little man, chuntering away while he sits on the loo, laughing, singing, playing. And his big brother, listening to me talk about the new confusing rash and needing to talk to someone at the suncream manufacturer, and him saying "because nobody knows that our little boy's got 18p deletion"

We are all changed by what was confirmed three years ago. And while the pain is present and sometimes the hope of his good progress feels torturous, with all of that, we still look forward and are thankful for all we have.

Friday, 28 May 2010

Let The Sun Shine

It's been a funny old week. I've been very worried about my darling sister all the way over in New Zealand having an operation to try and make her better and find out why she's been so poorly for so long. With the 11 hour time difference and the knowledge that I can't be there to scoop up her girls and take her place while she's away it's been horrid. Thankfully she's doing well and we can go back to existing in our own timezones without waiting for news or worrying.
D's granny has also been really poorly for a few weeks. This wonderful 93 year old woman (she of the ward full of old ladies watching boxing)is clinging onto this amazing life she's lead, but tonight while kindling the candles and all of us talking about what we're thinking, J said "I don't want great granny to die". Heartbreaking and sad and it feels like somehow this is our first real test of parenting. A sensitive boy, old enough to know about death from knowledge of my daddy before he was born, and his great aunt when he was still young enough not to get it. But this...this is where we get to hopefully do it all properly.
If you're looking at the title of this post and wondering when the sunshine comes....I'm getting there I promise.
So, with all that going on I just felt very down. By the time I got to Thursday night the arrangement that had been in my diary to see Hair with some old university friends just loomed in front of me. The thought of seeing friends who know me very well and who I love dearly like L, A, K, B and H and a group of other lovelies who only know me back when my life was simple, began to scare me. I sent my friend K an email saying I might not be there, and when she called to be an amazing friend and tell me she was worried about me, I blubbed for a fair while. At my desk. Sorry boss.

So, I worked late, walked down to the theatre and called my other friend L. And with a cheeky drink on our own, I let my friend in and opened up. We shared our insanities, our worries, and she made me promise not to keep isolating myself because she and my other girls need to know when I'm struggling. Instead of thinking they can't understand, perhaps I can let them try.

So, as we sat in the theatre watching Hair, the stage full of delicious semi-clothed and amazingly talented performers, I sang along, grooved, laughed and eventually cried.
When the song "Let the Sun Shine In" started, L grabbed my hand and squeezed, and we sat there like that, with tears coursing down my cheeks, for the entire number.
Then to top it all off (after being spoiled like VIP's all night) we were part of a throng of lucky people who got to join the cast on stage for the final encore of the night. We were singing, dancing, laughing and hugging together.

So I want to thank all my girls for last night and thank so many people for so many things. My fabulous boys for filling my heart to bursting, my families for all they are and all they do, and I promise, when I can...

I will let the sun shine in
xx

Wednesday, 26 May 2010

The Rhythm of My Week

Radio on, open the eyes, struggle to see and shrink dreams down to size
Slope out of bed to see my boys, ruffle their heads, clear up the toys
Choose the clothes, nag and dress, nag some more and down the stairs
Breakfast and milk, write notes, pack lunch, quick drink, quick hug, an apple to crunch
Walk through the park, hit pavement and stride, squash on the tube til the end of the ride
Work, smile, frown, think nice, 9 to 5 whizzes by in a trice
Slalom to station and trot my way down, twisting and turning away from the town
Clickety clack, rumbling track, speed to the suburbs as mummy comes back
Walk through the park, grass in my toes, smile at the birds, ease down the road
Kisses and hugs as I come through the door, smiles and soft curls, connecting once more
Check one for mood, the other for changes, respond or relax,whatever the range is
Sit down and cuddle, this weary old mum, the challenge of balance is finding the fun

Sunday, 23 May 2010

A little story about camels and straws

I'm trying to find a way to explain my recent mood swings in a way that doesn't encourage me to spend a post beating myself up. Because although that's something I like to do every now and then, I know enough to be assured that it's not good for me.
So instead I searched my head for a nice parable to illustrate things and make myself feel better at the same time.

It's only natural that every now and then things get a bit too much. Sometime because of hormones (yes, I'll admit it here and it's probably the only place where my long suffering husband will ever see this), sometimes because it's natural to get a bit het up (well it is in my family) and sometimes because I'm just not as good at balancing it all as I want to be.
An email, pressure of performing at work, an ill thought, word or response, another task for the to do lists, a request when I already feel I'm doing enough, another cloak dropped over my feelings through people just not getting it....

The last couple of weeks, I've been really feeling the pressure of wanting to do my best at work and having to run things single handedly at home (and spend proper time with my kids) because of D's business trips away. I already run things by remote control and spend so much time, as many full time working mums, fbending over backwards to keep everyone happy and probably failing all over the place. Not least with regard to myself.
So back to the story. And that camel's spine.
If I were a camel, I'd be in a spinal brace by now, every so often thinking I'm feeling strong and better, equilibrium returned, taking off the support and breathing deep and slow. And then a pesky strand of straw will fall in the wrong place, taking me by surprise, and the crack opens up again.

I've had a lovely weekend, full of sunshine, lots of activities and a fair amount of chilling too. Lovely friends, healthy family (although a strange rash on L that's been preoccupying that part of my brain). D is back, I don't feel too tired and I even started my day with a basket full of ironing and kids TV while the kids ate breakfast. So why at the end of all of that have I just breathed my way out of a quiet but angry tornado. Brought on by reading a few emails, fending off comments like "just don't bother" by D, entering stuff in the family diary, trying not to worry about my big sister and D's granny, and the ever present worry of whether I'm really any good at coping.

Still, positive things to take from this are that in my story, the camel's back is not broken, it's just got a couple of stubborn hairline fractures. And using my knowledge of spinal braces (and I'm hoping that in June I don't get to update my skills on that with our appointment at the hospital to check the progress of L's curve) I am healing each fracture a little at a time.

So, this camel may have the hump (do you see what I did there, even an attempt at humour!) but she's not broken yet.

Thursday, 20 May 2010

Oversharing, Undersharing, Somewhere in between

It's a week since I did a sort of interview with a very nice person talking about my lovely L.
Even though it was part of her coursework, we both took it very seriously, and I seemed to spend most of it being completely, perhaps far too, honest. I felt very comfortable so I just talked, but I didn't edit myself and a couple of hours later started wondering what I actually said.  I trust this person so am not concerned about her instincts on how and what to use, I think what I don't trust is me, or my very sieve-like memory when talking about the tough stuff (see, those tunnels again). And yet I haven't called to worry about what was in there, and in fact stand by how we left it, where I said if she wanted to talk more or dig further, I'd be happy to.
And strangely I am.
So since then I've been home alone with D on this business trip and have been the opposite to open, very quiet, very insular, although out and about but keeping it all locked in.  I've been having full nights of dreams and waking up exhausted without remembering a thing, which is my true sign of latent stress.
This week I also had an email flurry with a lovely old colleague/friend on facebook and she was utterly generous and kind about having read my blog and taken aback by how I didn't mention any of it when we last email blurted.
So then today I had lunch with a good friend and a kind and generous reader of this blog and listener to my woes.  And he said, because he's very wise and a writer so he notices stuff, that it must be weird, him knowing about things that I was referring to in our conversation, not because I've told him, but because I've written about it here.
And it is weird, but it's also what I've signed up to by doing all this.
I am committed to sharing things here, slowly but surely getting new followers and other blogging friends (like my new C18 buddies) reading what I'm writing.
It's not private, but it's sort of still in my control, because in a conversation with a like-minded person it's the stuff I'd probably talk about anyway.
I remember when I was younger my wonderful big cousin A telling me I had to stop telling everyone everything.  I think I was around 12 or so and was upset by girls being bitchy.
Since then over the years I've struggled with privacy and people knowing my business, a side-effect of coming from a close knit cultural community in a mid-sized city.
At University I worked out that as long as the original version of my news comes from my mouth, I didn't really mind where it went from there, because you just can't control everything.
I guess blogging is just an extension of that.
Where I draw the line is what I was thinking about doing the other day.  I took a photo of a couple of pages of my very private, very beloved journal.  Just to look in the cold light of day at how utterly insane these pages were, full of drawings and prayers and words and hopes and dreams and tears.
And I was going to add them to a post until I realised.
This purple wonderful book full of emotions, angry letters never sent, ultrasound photos, torn of bits of paper with words and ideas and dreams hastily written, along with the little pink moleskin pad I carry in my bag, are the only truly private things I have.
The unedited, unpurged, write as you find, it maybe different in a minute, real, visceral and "now/then" Sara.

I think I'll always dip in and out of the Overshare, and will continue to cherish and hide the Undershare.
I realise now however that maybe this blog will hover between the two.
Balancing between and trying to be true to its name...
Somewhere In Between

Tuesday, 18 May 2010

Displacement Posting

I'm feeling terribly emotional and frustrated today. 

I don't really want to dwell on that in this post (although just to get it out of my system, it's because D is away on the second of three business trips in  month and I feel quite lonely, and even though I made him fly early to avoid the ash cloud, I'm sad we missed our anniversary dinner. I'm probably hormonal, I am frustrated at work because it's been a week of banging my head against a wall so far, I'm messing with my head about the looming kidney stuff with fruitless internet searches, and people keep saying nice things to me about this blog and all it entails which until now I guess I didn't really talk about, which brings out all my tears)
HOWEVER
I'm not going to dwell on any of that because I want to talk about old ladies and boxing.

We went to visit the boys' great granny in hospital at the weekend (she's really quite poorly but happy and sweet as ever) and I found it gloriously incongruous that there, on the "old ladies ward" in a sea of grey hair, they were all straining to see the small TV in the corner with a repeat of a very brutal boxing match on it.

D thought that it wasn't at all strange yet I remained mesmerised watching them watching, utterly transfixed.

Old ladies and boxing. 

Odd bedfellows but lovely all the same.

Wednesday, 12 May 2010

Cause and Effect with hidden benefits

Last night we had a rambunctious bedtime, followed by lots of washing and carpet cleaning and finally a nice quiet story.

You see, when you turn a little boy upside down repeatedly (no matter how many times wifey has asked you not to do that before bed) on the odd occasion in the middle of hysterical laughter will come the cough, then the uh oh cough, and then the oh no! and the follow through
Which explains the washing and the carpet cleaning, not once but twice, because he did a little encore once the initial clear up was done, but this time we were ready.

So...
Cause - rough and tumble play daddy style
Effect - L becomes a paid up member of barf city
Hidden Benefits - confirmation that he still doesn't chew his food properly, due to unrequested close up of  dinner during above-mentioned cleanup.  Which though gross provides mummy with hands on example of his pharygeal hypotonia for the Statement letter.
Extra Hidden Benefit - teaching J what barf and yak mean and giggling before bedtime

Ah...Happy days!

Monday, 10 May 2010

Journey to Statement - 2.2

I found the time and head space to do an update email to our keyworker and L's nursery head teacher.
The former came straight back volunteering to do the request for the Ed Psych assessment and drop off the forms.  The latter did what she does so well, which is honestly and without pussyfooting, state her thoughts and get things organised.
Today's thought was a little update on his toileting, as the example of this still being the only thing that she and her staff find makes L stand out and seem not quite "typical".  He's beginning to be unwilling to be changed, noticing no matter how sensitive the staff, that he's the only one having to be pulled away from fun things to do that.
obviously that makes me feel emotional, because it feeds into my fears on that basis.  At a party at the weekend I found myself tucking in his top into his trousers, so that the nappy wouldn't be seen.
I hate that I did that.
I hate that he feels different in any way that isn't in front of me which means I can't help him to make that difference look and feel magic and special.
I also don't know if I'm holding him back on toileting or reluctant to rush because I think we need to carry on at this slow and steady pace.  He's doing so well, his body is being trained by our routine and his mind and nerve endings are slowly following suit.  I'm so proud of him and I've been reading posts from the C18 lot recently about all of this that make me very very reluctant to rush because he's already exceeding expectations in that forum.
Gosh it's hard sometimes.
I feel so emotional at the moment, trying to turn off my crystal ball that sees all these problems ahead of us and challenges for him before they even present themselves.
I know it all feeds into this journey of the statement.  I have to present my views of my child with a calm unemotional head.  I have to enjoy hearing that he is seen as typical and able and bright, but balance it with my fear of nursery being for 3 hours a day and school will be all day.  I know it's over a year away and a lot can change but I still see things that hurt my heart a bit in the clues they give me.
I have to listen to her opinion because she's seen so many children through those doors, but I also have to listen to what my head has been saying while observing him in his peer group recently.  The speech that is great but not moving forward on clarity as I'd like.  The behavioural overwhelmed thing he did at home with new kids around at the weekend, and also at a party in a familiar place.  The things I thought he knew that he doesn't anymore.  Basic stuff that I think is giving me a clue in order for me to pay attention and watch closely.
What's amazing at the moment is the fact that D and I are engaged together on this, and he said something wonderful tonight.
We have to be thankful that we're even having any of these conversations.  His great progress.  His under the radar status.  Just think how lucky we are and how great that is because none of it was assured.
He also said the magic words.  We have to move forward now because we can and he is able to.  If at any point or with anything we can't, then we'll deal with it then.
I feel so filled up with a pessimism that I hope is just that and not something prescient.
I feel like the minute I think of any of this, I am immediately filled with tears that sit waiting to be allowed to come out.
I need to get a grip.

Friday, 7 May 2010

Looking Out From Inside My Tunnel

I've been thinking about tunnels today.  Which is the best way to describe something that happens to me very rarely, but very acutely when it presents itself, and that has just happened again.

When I go into a tunnel it's my mind and body's way of protecting me from overwhelming emotions.  But now that it's happened in a situation that wasn't stressful or hostile, I think it's also when I feel attacked, so instead of getting angry, I become emotional and then shut down.

The first time I was aware of it was back in 2008 when we found ourselves in front of a panel of bureaucrats and doctors at the Royal Free Hospital.  I've never written about this because the whole process, although necessary to go through, has always seemed like a betrayal.

Back in my pregnancy we found ourselves being concerning at our 12 week scan and having to have a CVS to see if the nuchal fold measurement was right in looking a bit dodgy.  Cutting a long story short, the first result was ok, the second was really really not, so then we had an amnio, then a long wait, then it seemed ok.  Fast forward through problematic rest of pregnancy, constantly in and out of hospital from weeks 25 to 39 when I was finally induced.  I never saw the same doctor or nurse, had to constantly repeat myself and never saw my named consultant, despite the abnormal start to the pregnancy and the fluid leaking from me for the whole of the last trimester.

Fast forward again after the birth and through a lonely time with a sick baby and everyone thinking I was neurotic all the way to our diagnosis when he was 9 months.  We then had to track back and found that a test hadn't been done on the amnio and they had missed it.  We then paid to get my medical notes and found that there was paperwork mentioning chromosome 18 and referrals suggested, and none of it had been passed to us.

Fast forward through huge trauma for me at a time when I was on the edge mentally and emotionally with financial pressure building.  So we talked to a lawyer. They said we had a case.  The case would be built on a wrongful birth.  I feel sick just typing that and how wrong it feels and indeed felt back then.  Facing an abyss and possible huge medical costs for all the unknowns we had, the least we decided to do was write to the hospital with our complaint and they suggested a round table meeting.  I've blocked out most of it, but facing 10 or so people, including my absent consultant, I felt bullied, patronised and not listened to.  After getting emotional and clamping down on my tongue to stop it coming out, I felt myself shrink into my chair.  Disappearing before their very eyes.  The mood in the room changed and I think they saw what was happening to me.  I can't remember much more about it, but that was definitely my first entry into the protection tunnel.

The second time it happened was during my appeal for J's school.  The subject of the first post on this blog.  I had done so much preparation and been so monumentally dismissed by the clerk once in there, that I spoke, got emotional and did that shutting down thing.  This time I managed to say more and be more effective and again, the mood in the room changed and I managed to give back some of the crap that I had been given.  Again I went into a tunnel afterwards and can't really tell you much more than that about the appeal.  In the 24 hours following it, I could barely tell you anything at all.

So that brings me to today.  I've had a busy week, nothing out of the ordinary but lots of different things requiring different bits of my brain and all of them full and total concentration.  It was a week where work, home, nursery, personal creative things and of course the ever present Statement paperwork that I haven't done, all came in line together.

The day my head got woolliest was yesterday when I finally wrote my to do lists and found myself overwhelmed at the thought of it all.  One of the big things I hadn't even added to my list was my role in the kindergarten fundraising event that needs to happen in the summer and that the kindergarten is, most gloriously kindly, sharing its funds with us and the C18 cause.

I've been trying with the other wonderful busy mums who are also not running from this, to find people to join in and even take over so it wasn't all resting on me and us.  I must have been biting my tongue for a while in order not to react to the "I'm too busy" comments, or indeed the complete ignoring from people who signed up to help at the start of the year.

I think i just tipped over the edge when at a general meeting, in response to the plans that four of us had no choice but to go ahead and make, there was a cacophony of "no's" and criticisms, with, at first, no offers to help with finding a new way forward.  I honestly can't remember what I did or said, but I know it involved a bit of crying and then clamming up.  Then everyone spurred on by our formidable head teacher came up with a great solution and another Mum went on to explain the C18 part of it, perhaps to help excuse my emotional reaction.  So then I think I talked and cried again and then everyone went home - except for a few happy helpful few who in 10 minutes helped us to plan the replacement event and that was that.

I have spent the rest of the day struggling to be healthy headed.  I've managed to read the scripts I needed to,  email the writers and edit and rewrite the treatment I've been working on, but it's been a huge struggle.

I even managed to pick up my boys, have a little play, ship them off for a sleepover at wonderful Aunt C's, before sitting down, laptop in hand, work done, house quiet, writing this and letting the fog take over.

Inside my tunnel it's numb and quiet, foggy and dark, but not unpleasant.  I'm learning to come out of it quicker and so grateful to my mind and consciousness for allowing me a safe place when all around me becomes a bit too much.

Wednesday, 5 May 2010

A slightly squiffy memory from a happy Highland break

This rock caught my eye while sitting in the cold sunshine on the bank of a Scottish river one sunny March weekend.  I watched it sit there, dug in, solid, constantly buffeted by the ebb and flow of the tide above and around.

And as I sat there, gently mesmerised (and ever so slightly squiffy) I realised what the root of my fascination was.
That rock reminded me of me.  Buffeted but still.  Disappearing under the rush of the waves at regular intervals, but emerging generally unscathed.  A bit more worn, infinitesimally less solid on its feet...


But there, trying to smile, trying to glisten in the sunshine and stay where it had chosen to settle.

Thursday, 29 April 2010

Chromosome 18 Registry and Research Society (Europe) - we need your help

Imagine living with someone who has something so rare that you have never met anyone else like you
Imagine the joy of finding a group of scientists that are committing themselves and their life's work to your child's condition.
Imagine that child being one of a thousand or so in the world affected
Imagine as a parent finding a virtual world of parents out there who guide and inform you
Imagine being happy for them when each year they make it across the USA and meet at a conference with all the scientists and families

Now imagine a small but formidable European branch of this programme arranging a conference in Scotland at the end of July for those who can't see how they'll ever make it to the US one
And imagine how hard it is to raise money for something so small in a world where there's so much need

Now if you can, imagine giving a little, anything you can, to www.chromosome18eur.org, Chromosome 18 Registry and Research Society (Europe) Charity Number SC040399


Thank you for letting me hijack your imagination and for anything you can do.

Journey to Statement - 2.1 - and the disappearing "u"

Slight change of plan following a chat at J's school today with the headmaster and inclusion teacher/SENCO.
They are delighted that we're so ahead of ourselves and were kind and generous with their immediate engagement and offers of help.  They think that instead of doing a parent request for a statutory assessment, that we should work on what we have already in our locker.  Something we have the time and ability to do because we're so ahead of the curve.

So we need to get ourselves an Educational Psychologist assessment and see if our current Kindergarten setting are willing to co-ordinate the Statutory request, adding in their own report, the paediatrician's medical report, our keyworker and whatever the Ed Psych says, alongside our parental letter.

It was a great meeting with this school that I know will be as wonderful for our complicated L as it is for our typical J.  I talked, listened, and wrote a few things down on the fat and ominous envelope I trudge around with me in my handbag.

But I'm also quite sad writing this, and seem to be doing quite a good job of half remembering and mainly forgetting some of the stuff that perhaps was a bit upsetting to hear.

The kind of comments that come from my mind and mouth, but that I'm not sure I really believe even though they're part of my patter.  Things that secretly I've been saying without huge inner conviction because they kind of break my heart.

"He may not always be this good".  "He may stall".  "He's a genetic timebomb and I'm just waiting for the bad stuff to start".  "He might not always be this lucky"

These are the perils of a parent of a child with a "disability" who's not yet shown how it will really manifest itself.

This lovely experienced SENCO seemed to think that these things I say are actually on the button and probably in our future.  We matched speech patterns as polite strangers do, me talking in such an informed and matter of fact way, which allowed her to reply in kind, believing I was all I seemed.

Right now a tear is trickling at the confirmation of my concerns about retention.  L has a wonderful brain and learns when you show him, but struggles to discover and possibly has flaws in his longterm memory.

Like recently, he's lost the "u" from his name when I ask him how to spell it.
It's just disappeared.
It's not a big deal, it's not a disaster, but it's a portent of something darker for me and one that again buts up against the tough stuff.

The fact that he needs more than even the "more than normal" stimulation we try to ensure. Perhaps more than I can give working full time and more than a life lived by remote control during the daytime can offer.

It's so hard not to jump too far ahead, but I know I have to help myself by not letting the fear in.  By opening my eyes, seeing it and then stopping being frightened, returning to the safe place that is loving him for what he is, what he has and all he can be.

But on his terms

And in his time

Wednesday, 28 April 2010

Journey To Statement - 2.0

I have an apology to make to the aforementioned community paediatrician.  It's an apology I'm very happy to be making because it means I was wrong and can now add her to the list of medical people who get it and who I can trust.
She goes a bit further because she can see and hear me without me jumping up and down and shouting.  Having written a great report from our meeting, and followed up the kidney thing independently, today in a meeting just for me she listened, responded, intuited and without being pressed, offered to be across L's case until he goes to school.
Apologies are also going out to my keyworker, who, after a very long and emotional email from me responding to the Team Around the Child suggestion, stopped me when she saw me in the neighbourhood and we discussed things.  She'd been thinking, talking to people and digging, and had come to the conclusion I had which was that I should apply for a statutory assessment and take it from there. She offered that J's school, who we're seeing tomorrow, can talk to her at any time if that would be helpful.

So I now have wonderful practical advice and letter structure from my friend K, a medical report being compiled by the paediatrician, a meeting tomorrow at the school and a keyworker ready to respond to whatever I may need her to do.  Alongside, of course, the support and help of L's nursery and head teacher.

So today, is a good day.

Friday, 23 April 2010

Brotherly Love


Been meaning to learn how to put photos on this site.
This is my first attempt and with two little people very close to my heart.

I was looking back at old photos and was struck by how many of my boys had this gorgeous affection in them, totally natural.




This first is from 2006.  I love the smile of my soon to be magic L, secure in the love of an older brother.  At this stage, following a really worrying pregnancy, we weren't back in worry land yet and were just enjoying our new baby.




Here it's 2007.  Things were clearer, we knew more, in fact we knew less, and we didn't even know how little we knew but one thing very clear was how hard it felt. But these two brothers in their bubble seemed to know and understand everything important.




Taken on Grandma's 70th birthday, back in February 2010. Now we "know" L's genetic disorder.  We all know it's name.  We all know that he finds some stuff more difficult and sometimes gets a bit ill.  But these brothers who share a room, who play and fight and play some more, know that brothers are something to be cherished.
And cherish them we all do.
Every little curl and smile.



Wednesday, 14 April 2010

The Ghosts of Christmas Future

I've been remembering a visit we took back in 2007 to the spinal unit at Great Ormond Street.  L had been diagnosed with 18p- a few months earlier and we were there as part of the raft of tests to check out what was and wasn't looking problematic.
Having felt the little curve in his spine forever and asked for an appointment to check, we were told he had kyphosis, a c curve in his spine, and that he needed to be fitted for a spinal brace.  Besides the respiratory issues and slight delays that had brought us to our diagnosis in the first place, this was the first time we had it confirmed that things were different.  The word Deformity was used soon into our appointment and I had to stop the consultant immediately and remind him I was a mum, a human being, and he was telling me something I didn't already know, so please be gentle.  To his credit, he was.
So this day, we were back as a family to have L measured for his brace, a very upsetting thing for him and us.  In the waiting room D, J, L and I sat playing and thinking and trying to be brave, surrounded by children who all seemed so frightening to us and our apparently "typical" boy at that stage.
I started to talk to a friendly woman who had a boy, about 7 who was quite developmentally delayed and who had a brace on and was in a large buggy/wheelchair.  In the course of our chat I mentioned our still raw diagnosis and she said that her son too had a complication with Chromosome 18.  She then, with the best of intentions, proceeded to bombard me with information, help, advice, comparisons between our children and a barrage of words and thoughts and emotions that I didn't really know how to compute.  And as I talked to her and continued our conversation, trying to take it in, trying to have a small reaction because I knew she meant well, D built a silent brick wall around himself and zoned in on playing with the kids and making her, and himself, disappear.
We had our appointment, L screamed as we stretched him on a rack and kept him still to take the mould, D withdrew further into himself, still in the denial that shrouded him for so long back at the start of this, and I buried all the feelings.
A few days later I went to a weekend with my university girls, something we still do annually and will I hope continue to.  I was not myself, I was very stressed and quiet and my friends, bless them, really didn't know what to do as it was all so new.  Early on before everyone arrived I think I blurted out how screwed up my head had been from meeting this woman, on that day, with the appointment and everything around it.  How even though she'd be mortified to think she did this, she completely took me by surprise and made things a lot worse in my head.  And I really didn't think it COULD get worse at that point, lonely as I was, my darling sis having just emigrated to NZ, my local family all hurt, frozen by their denial, my having not worked for so long, the pressure piling up and it all feeling so very very hard.
A few months later I found the Chromosome 18 Registry (http://www.chromosome18.org/) and a whole world of people who lived a life similar to me and who immediately took me to their hearts.  I started to post emails, treasure the replies and begin to make the friends and get the advice that has become so important to me. 
I used to describe the C18 lot, as I did this woman in the waiting room, as the Ghosts of Christmas Future, who in talking about their lives were showing me things that may be part of mine as L grows and unfurls himself.
But these parents, these wonderful few, enrich my life and make me look at everything I need to see, and it comes forward to the front of my mind when I need to see it.
They are my lifeline and although sometimes overwhelming with the detail of all they go through, something I really couldn't do without.
I've only today told them about this blog, gently emerging as I am into the public with it.
so for any of you who stumble here out of loyalty and/or curiosity, thank you for all you cope with and all you are and for making our journey sweeter and more informed.

Saturday, 10 April 2010

Bloggging on the move

I'm in the car on a sunny day, listening to Joseph, with the boys playing sweetly in the back.
We're making the most of a sunny day off for lunch at friends in Sevenoaks.
Today we have a sneezy rattly and defiant little boy with a constant trace of protein going on. But now I know there's a team at GOS ready to look and test and see if there's anything to worry about, I'm way more relaxed.
So I can enjoy the good stuff:
The sun
The four of us
My kind clever sensitive big boy
The stubborness of my little boy because, hard to parent as it is,he needs those tools in his locker.
The singing from the backseat
The questions from the backseat
And the lovely daddy in the front

Thursday, 8 April 2010

Snail slug update - mainly for myself you understand...

ok, so the snails at last night's garden party I'm guessing are common garden snails and they either lay eggs in dark soily places (like the soil under my bushes next to the path) and or give live birth.  I'm guessing either method could explain their presence there last night.
slugs are hermaphrodite it seems, so they don't need the rentals around for them to emerge from the soil where they've been growing, or hatching...
it's not very scientific but it has answered a few questions for me.
and I'm not going back to find out exactly how it works, because the pictures on the websites I've been looking at are altogether too slimy.
I thank you.

Great Ormond Street...oh and snails

Every so often I like to get a big old dose of perspective on my life, particularly when I'm sliding into that terrible land called self pity.  So I watched BBC 1's documentary about the cardiac unit at GOS on i-player yesterday, and leaked  tears throughout.
Great Ormond Street is the one place I've found where the respect for parents and children alike, informs every conversation you have with every person there.  It's a place where no matter how different your child may look or feel in normal life, they fit in there and indeed, in our case, feel painted with luck and fortune around so much more challenging conditions.
The wonderful Dr Phil Rees was on screen a lot on this programme, showing his compassion and humanity at every point, more than a doctor but all a doctor should be.  Seeing the children who were featured, and their families, it's hard not to be incredibly moved and sad that they have to face the kind of thing a parent fears most.  But seeing all of these terribly ill children made me appreciate even more the happiness in Dr Rees's face last month when he told me that Louis' heart was clinically normal.  That was amazing to hear for me, and I suspect something he relishes as a doctor when so much of what he sees and delivers is painful to all involved.
So watch the show, if you want to open your soul up.

Now, then, a question about snails...possibly inappropriate after the above.
Last night on my path in North London, there was a veritable snail birthing clinic in existence.  Mummy snails, Daddy snails, midwives too I suspect, and tiny weeny baby snails all over the place.  All perilously close to being squished were I not so sharp sighted and security light so good.  But alongside the teeny tiny snails with their teeny tiny shells, were teeny tiny snails without shells, which I assume were slugs.
So question is, do the snails give birth to slugs too?  Are snails and slugs related?  Are snails surrogates for slugs because there were no adult slugs to be seen?  Like anywhere.
I'm very confused.
So I'm off to google it all now and if it's interesting, might report back

Saturday, 3 April 2010

Kidneys

It's always good and bad when I'm proved right.
Having got bored of waiting for Barnet to take me seriously and tell me about the proteinuria samples and all of that, I decided to contact Great Ormond Street myself.  On Thursday, finally this double pronged approach to ever getting a kidney referral seemed to converge.
As I was on the phone to Great Ormond Street finding out how I find out when I might get an appointment, Barnet hospital were calling my home to tell me that we weren't going to see me there, but that they needed to send us to Great Ormond Street.
I got home from work to hear about Barnet and then the very nice admin man from renal at GOS called to advise me as I'd requested, so I could tell him about him now seeing two referral letters.  He assured me, finally, that we were now in the system and that we didn't need things from Barnet as they'd do all of their own tests there.
I first started looking at this for myself in April 2009.
I first saw a registrar about it in November 2009.
I first got blood and urine tests done on New Year's Eve 2009.
We did two more subsequent urine tests and blood pressure readings, with me only knowing they were high.
I've been trying to get clarity for months.
I've been waiting ever since.

And the community paediatrician who told me we would probably just get bumped back to a registrar, much to my quiet annoyance, is wrong.  Just as I knew.
I can't wait to tell her in a few week's time.

Here's to clarity.
Here's to being wrong about what we're looking at and what it'll mean.

Offstage left

...I'm hearing the sweet sound of Daddy cooking the boys his famous Passover dinner.

As I sit in here, updating the diary, messing around looking at fb and blogs, looking up to watch the birds in the garden every now and then, these have been my favourite comments:

I've never had a fried egg before.
What's vorscht?  This?  Oh that's my favourite.
Well, if you finish what's on your plate we'll see about dessert.
Shall we share this matzoh L as you're not going to finish it.

Ah.

Lovely Easter Pesach bank holiday weekend

All is well

Wednesday, 31 March 2010

Stern and Necessary Advice - J to S 1.2

My very wise and kind 18p- mummy friend K (who lives in the UK and who I really have to meet someday!) has just given me a timely ticking off about not waiting around for people to turn out to either be helpful or not. 

She says I need to write to the CEO of the LEA (so many abbreviations in this section of my life!) and request an assessment.  So while the keyworker assembles the as-yet-to-be-appointment team, and I wait for my school meeting, I need to write my letter and really get going on it all.

I feel a bit sick but she's right.  I mean you're right.  So thank you!

One day I'll post about all the fears I have about how it feels to even ask for this process to begin.  How I fear I'm really sometimes as much in denial about my little man as the other people I fight so vehemently.  How the fact that he is doing so well and being so typical feeds a dangerous part of me.  The little tiny piece of me that is still hoping someone will turn around and say "sorry, we were wrong, he's actually fine".

Another day...another post.

Tuesday, 30 March 2010

Journey to Statement 1.1

Start with the positives.  The best thing that's happened on this early part of the road is the response from J's school.  They immediately put in a meeting for me and D to meet the fabulous headmaster and the inclusion teacher to discuss my questions and hopefully give us the benefit of their great experience.

Next I sent a big email to my keyworker putting all my arguments and thoughts about wanting to move along the Statementing road.  She took a short while to send a considerate and supportive response thinking the best way was to arrange a Team Around The Child meeting in order to get a Family Service Plan which is broader than an IEP and covers the medical side of things I'm concerned about.  She asked some questions and was kind and engaged with what I was suggesting.
When I sent my reply to her I was feeling very frustrated about still not having had a kidney referral, had just found out that his right grommet has fallen out of his ear after the op and that the insurance were threatening not to pay for what they had previously agreed, and still not had a date for the continuation of my meeting with the community paediatrician.

So I kind of ranted...quietly...not at her, but in her direction.  I must have sounded like a lunatic, but I expressed my need to have some control about who sits round this table discussing my child and our family.

That phrase "Team Around the Child" got me emotional then and does so now, because the whole point is I don't have a team.  I don't have an organisation like autistic and downs families would, to mentor me. I don't even have a local 18p- mum to hold my hand, or give me a ruler against which to measure L's chances. 

I do have a GP surgery that administratively works, but a GP that doesn't really know us. 
I am being weaned off our respiratory specialist at Great Ormond Street from acting as paediatrician.
I have a lovely regular physio but get pot luck on the day of the other 9 or 10 areas we monitor.
I have a great nursery and all the staff there.
And I have my nice keyworker although that's all a bit unusual too because of her job and him and anyway..

I know that I will find it almost impossible to have anyone around my table on my "team" who isn't singing from the same song sheet. 

And I can count safely on one hand the medical professionals who have got it right in the last 4 years (in fact I'll list them - CW the respiratory man, my friend's cousin CL who was amazingly helpful in one phonecall with her advice and care, J the physio, SH and MW the ear lot, AM the neurologist and the nameless paediatric registrar at A&E last December).

It's a really simple tune on my song sheet.  First it requires the ability to look at my magic smiling unfazed-by- hospitals boy and say
"wow, he's doing really well" 
but here's the tricky part
"despite that big list of things that are medically concerning, and the fact that THERE'S A BIG CHUNK OF CHROMOSOME MISSING IN EVERY CELL IN HIS BODY!!!!"

I almost kissed the A&E registrar last year who decided to keep L in for a night to observe (thank goodness, as even medicated every 2 hours he was still extremely poorly) because, and I quote "I just don't trust someone who hasn't got their full Genome.  Things that shouldn't be there are, things that should be often aren't, and you just can't take any chances".

So, how can I fill a table with people like that?

Sunday, 21 March 2010

A Journey Into the Land of Statements -

This is what my blog was really for, charting as a parent of a special kid, the kind of things that when you're in them, you don't want to talk about because they're hard and you don't want to dwell on the negative.  And when you're out of them you want to forget because they were hard, exhausting and you don't want to dwell on the negative.
However I think it's really important that this stuff is here to be read, to advise and support other people going through it, and to help me to see how much we achieve when it all feels too difficult, as it inevitably will be in what I think will be a long road to an as yet uncertain result.
So, my little boy with his genetic disorder.  My little boy who does so well but who may have that held against him.  My ability and indeed determination to look ahead to when he starts school in September 2011 and whether/how/if we can or should get a statement of special needs.
So begins the journey.
Come along for the ride, I may need some cheerleaders