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

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)
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.

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.