Weekends With Friends

I went to bed at the weekend dreaming drunkenly about this latest blog post, knowing that I must must find the time and memories to write it when I got home.

I am lucky to have some wonderful friends, but there are 10 very special women who have burrowed into a place of their own, across more than a decade of weekends such as this one, and it is this group who are the ports in the storm that is sometimes my life.

In the year 2000 a random selection of girls got together, all of whom had been at Leeds University at the same time and were either my good friends, or their good friends and those who were free at the time.

We started it because my hen weekend gave a few of us the bug, and to help our other friend who was single mum to a gorgeous girl, and sorely in need of some fun with 10 babysitters on hand.

Those two days and nights of dance routines to learn and wigs to laugh in and food to eat and wine to drink and walks to walk and trampolines to bounce on and laughing and learning and hugging and playing, was the start of something that I think none of us knew would endure as it has.

Each year we gently find our way around the touchy subjects from last time and give those people the space to update us if they want to. We talk constantly together, in pairs, in fours, with the dregs of wine at the end of the night, in our rooms before sleep or with tea in the mornings over the washing up.  We sing and marvel at our ability to come up with fake band names, we write notes and read back and laugh again at what was so funny we had to write it down in the first place.  We share everything and yet miss so much of what goes on, as the group waxes and wanes its way through the weekend together.

This Sunday, in our lovely cottage in Rye, we started to track back to the start - where and when we went each year and who was missing and why.

What struck me as I took notes was the personal history enclosed in that tally.  People missed years because of pregnancy, studying, family illness and family deaths, travelling or moving away, and sometimes just because life got in the way.  Our histories presented themselves both by why we weren't there or what preoccupied us when we were.

And in spite all of that real life stuff that could have derailed us at any time, we have persisted, sometimes via just a sneaky day in London to tide us over to next year; and this long into it I think we all know some things are constant.

That we never ever judge anyone for what they can and can't cope with, how they do or don't feel, whether they will or won't talk, because across this time we've all been the one who couldn't summon up their smile.

As I write this, I am struck by these women, this group, of friends close and some less so and yet who as a group have done so much without knowing it:  Who allowed me to be so troubled, so distant, so stressed and so on the edge for so many years along the way, even when I couldn't even show them how I felt.  Who were the subject of many a session with my therapist, and at least one panic attack that I can remember.  Who allowed me to drown a little, taking turns to hold onto my wrist ever so gently to keep my face out of the water, and who until now have had no thanks or real acknowledgement.

So thank you for loving and trusting me, and making fun of me and appreciating me, and guiding me and putting up with me and for helping me smile and cry and be quiet and loud, and stressed and calm. All just by being who you are, for one precious weekend a year.

This photo is missing four of us but it makes my heart swell with happiness - at the sneaky glimpse of the theatrical world that brought us together at University, at the fun memory of running up the hill and setting the camera on the other side, at the hats and smiles and frowns and poses.

At 11 glorious strong funny wonderful women - both pictured, not and including myself - who I am proud and happy to call my girls.

A post from my boys

Having just spent the day, in fact two days, in fact the week, well, three weeks, the year, two years - oh let's be honest 10 years...cooking, running, driving, planning, helping, coping, eating, shouting, laughing, play dating, more cooking, more jobs, more planning, more everything and a tiny bit of stressing.....

I am now in front of my computer, having finished the last on the list of today's jobs before our relentless weekend of fun and 40ths and weddings and shipping the kids off and the mother in and the dog out.

My youngest is here with me, chatting away watching me buy the gift for the above-mentioned wedding.

After doing that I decided to look in on this blog, and show him what it is and a tiny weeny bit of what I write here.

He asked if he could do a tiny blog too.

So here it is, typed by me, his devoted secretary:

*we just had a small row about me typing it, and agreeing that he could type his name*

I want to write about my brother.  I get to play rugby with him.  That's mainly all I want to say.
Playing football with my brother makes me happy.

*Mummy just asked if I have a message to say to anyone who comes to read about us here*
 
I don't.
I really want to type my name now.

*Mummy says I have to do a little message and then I can type*

Wait a minute, my brother just came in.

*Mummy is asking him if he has a message having just been shown that this blog exists - for the record, Mummy may well regret showing them this...let's see*

*With some prompting we say*

Thank you for reading about us, sort of, it's a bit weird but

*this next bit is kind of written by me*

Mummy hopes that we trust her to not say too many embarrassing things.

*time to sign now - just had to tell them I don't use their full names, so they have plumped for initials*

LJSJ  JHAJ

*they want the dog's initials too*

BEJ

*preview shown, they aren't that excited, which is good*

Publish and  goodnight

#Thisismychild

Half a post for a brain not quite working but I love this Mumsnet campaign www.mumsnet.com/this-is-my-child and I want to stick my oar in.

#ThisIsMyChild as I sit I a hotel room 300 miles away pretending to be TV Sara, thumbing clumsily on my phone (phew, circa 30th August, finally done a tidy and edit)

Typical to a casual onlooker but as rare as an alpine flower under a microscope
Unrecognisably lucky and successful from the baby we had diagnosed
To his Daddy joyfully a boy with no need for a label and with all the promise of a typical life ahead
To his big brother an annoyance and yet not entirely like everyone else's sibling
To his extended family a joy and a relief from the worry of the earlier years

And to his Mummy all that he was, is, could be, might be in all its joy and pain and
fear and exhaustion and protection and need to hide and shout, to fight, to be patient, to dare to dream and to challenge all who stand in the way

This is my boy but this is my voice and I am sorry if it shines a light that you don't want
I will stop talking about you in a heartbeat if it hurts, but I can't stop talking about
how blessed, challenged, heart filled and heart broken I sometimes am as your mummy.

When a doctor can't see or hear me when I tell them what you need
When you squeeze and kiss the energy back into me
When you experiment with tears and emotions that I feared might not be in there
When you read and speak and run and jump in a way that we were cautioned you might not
You are my youngest boy

You are ours to protect

Forgive me if I do that too loudly sometimes

A Pocket Full of Firsts

1st first - I have just been added to the Mumsnet Bloggers Network
Upside - ooh lovely, more people to read me
Downside - completely paralysingly...aware....of every...word...I.....type

2nd first - I did the 2 bit of that 5:2 diet thing yesterday, officially dieting and calorie counting for the first time ever, having chatted about it with a fabulous person the night before
Upside - drank lots of water and had something to talk funnily about in creative meetings that day at work
Downside - came home and frantically ate anything we had in the house, because I really should have planned how to survive on so little without fainting

3rd first - instead of juggling all the hats I wear in dizzying fashion all day every day, I let one of them take control and really get to sit on my head and filter through into my brain.

To explain:

I spent two days this week at the Business 4 Better conference, organised by UBM to connect charities and businesses at Olympia for workshops and seminars and conversations.  Watch the video on this page B4B UK to learn more (and to see exactly why I am done with short hair - the Sheena Easton look is just not working for me anymore)

I don't about all of you but when do you get the time to just focus, properly focus on one thing?  Without all the other lists and needs and wants pressing in for their share of your brain?  I am one of those people who join the longest queue at the supermarket in order to be forced to stare into space with nothing to do.

So what an amazing gift it was to get to spend two days on a stand, next door to the wonderful Jeans4Genes http://www.jeansforgenesday.org girls, alongside some amazing parents of our Chromosome 18 kids, talking about, thinking of and planning for our charity.  I have come away with plans and partnerships and ideas and hope and a massive sense of perspective of our tiny little place in this big wide world of need that exists out there.

I know that we parents of our Chromosome 18 kids will always find the time, space and fundraising wherewithall to continue to do what we do to educate the doctors, schools and friends to make the world an easier place for our kids.

But look at all these people who choose to work for the benefit of others.  For people here in the UK and around the world, for the healthy and the sick, for the fortunate and the not, for animals and insects and the planet and us all.  I was humbled and exhilarated and close to tears every time I had a moment to catch my breath.

So the Upside - heart swelling pride about everyone in that room, and on a personal level meeting and talking to 3 mums, a dad and two fantastic affected members of my rare and sprawling Ch18 gang who I didn't realise would affect me quite so much as they did.
And the Downside - feeling small and insignificant seeing just a glimpse of the size of the need that exists.  But also, the realisation that my darling little boy who works so hard without knowing, to do all the things that other people take for granted, is going to have to keep doing so all his life with us to help him.  Only one day I won't be there fundraising, fighting and campaigning alongside him anymore.


The failed dieting first allows me to look at myself honestly and understand the need to be healthy.
The two days at conference first makes me see that every second counts, in my reality and in life itself
And my potential new audience first and sitting down to write this post has provided the connections between them all.

You make a living by what you get and you make a life by what you give.

Let's get giving

Crystal....balls

Back again but this time, I am going to try not to break my heart, which I did a little bit of with the plaintive cry of my last post.

This time I am going to quietly, slightly tiredly, share a little more about what's in my head and leave the heart bit intact.

Sometimes it is wonderful to have the ability to look ahead, see some of the things that might be hovering there, and make some plans both practically and emotionally for if and when that happens.

Often that process is contradictory, by being both empowering and awful, satisfying and wretched, surprisingly easy and terribly hard.

And always for me, there is a process to follow.  A clear eyed unemotional intellectualised search, a very calm ordered look at what what I have to do and need to know.  Lately after all that grown up stuff there is also a dribbling slide down to a sad place where I worry a little too much and forget to enjoy today and now.

As you might know, I am a big loud happy advocate for the charities Genetic Disorders UK/Jeans For Genes and most importantly the Chromosome 18 Registry and Research Society.

I split my time working in my new, challenging and very busy job, being media representative for Ch18 and all the other things that being a mum and a woman and a wife and a sister a daughter and a friend bring with them.

I have noticed a sea change with my relationship with Ch18 recently, because when I first decided to join the management committee it was to help everyone who came after us, help them not have to feel as lonely etc as I felt.  I am an educated stubborn hard working woman who works in media and I reckoned those skills should be put to helping them.

In recent months the amazing remarkable genetic research and clinical study run by Drs Jannine Cody and Dan Hale and team, has turned its eye on the little "p" arm of Chromosome 18 and the hard to understand but very important gap that exists on it in my boy.

And for the first time I have realised that all this time I spend thinking and planning and fundraising is actually going to have an effect on us.  Because I am now able, in tandem with the team, to look ahead to some difficult conditions that may find their way into our lives in just a few short years. Or may not.  And there's the rub.

Off I go with studies and forms, information and fears, to my neurologists and optician and school and physio and what I have to say is hard but necessary and being necessary even harder than I perhaps realise.

"Hello, can you please help me look at our boy, fill in some checklists and listen to why we are asking you to do these, and then can you repeat them again year after year, and can you help me to slowly wipe the steam off my crystal ball as we see what if anything we might have to add into our lives".

I make calls and print letters with actual facts and figures and names and try to get systems in place. I know that Great Ormond Street and my paediatricians at Barnet will respond because I finally know how to help them to.  I also know that school is already listening and while that is amazing, it is also a new and hard mode to shift into.

What I think I can't find in the system is this quiet little request I have... if something starts to look like it is appearing in the mist, can you please help me cope?  And can you please insist that I don't spend my down moments looking in that crystal ball too much and instead enjoy all the today and good and loveliness that I have?

Friends, readers, quiet page viewers and fb traffic guests and family, that is where you will come in. To hear me and hug me and entertain me and be my friend.  But also to come along on my journey as I realise now, more than ever, that any money I raise has to be big enough to help not only the families in Europe, but also the lab in Texas.  This clinical study that with the work they do from the information we give them, are helping feed into other scientists' work and other programmes to help with diseases in the common population.

In February I am going to do a very big fundraiser and what I do and ask of you all will reflect how everything has changed in how I see my boy, our family and my role for good beyond.

Watch this space and thanks for listening

Working Smiling Resting and Suddenly Crying

Each year I think I'm better now, it doesn't affect me anymore, look how far we've come, look how lucky we are and look how good it is.

Each year as I write birthdays and anniversaries in my diary I put his name, nice and small, on June 4th and pause a little to let the memories subside without actually emerging.

This year I put brackets around his name and when one of the boys saw it they asked why is that there?  I breezily said, oh well I like to remember the day I found out that you/L had his special chromosomes.

Really it's all fine, I'm coping so well, he is miraculous, it's all in hand and life is rebuilding itself beautifully and right now, when I don't think about all the unknowns, and all the silent "special parenting" I do all day every day, it all works.

And yet, just now I was laughing and throwing a ball for my dog, in the sun, in my garden on my day off.  One work call was finished and I'd had a lovely follow up chat with my fantastic colleague.  A diary full of work calls and coffee with friends and supermarket lists and sunshine and sandals and shorts awaits.  But as I threw the ball for the umpteenth time I suddenly and inexplicably started to cry.  The dog paused and lay down looking at me, so I stopped myself but the smile hasn't yet come back.

The tears are stuck somewhere in my ENT system and I probably need to watch something funny and moving on YouTube or Twitter or Facebook to set it all free.

Because no matter how good, how glass is half full, how completely thankful I am for our luck, his magic, my strength and our teamwork.....it's not ok.  6 years on it is still absolutely not ok that he and we have had to enter a world of doctors and unknowns.  To have had to find and join research programmes to help with all the gaps in information.  To have to have unbelievable multi-tasking skills in order to do everything I need to do.  To work and parent and be, as I have chosen, an advocate for and member of a charity in order that other people don't have to feel like I felt back then.  Like I still sometimes feel now.

He's my brilliant boy with a brilliant brother and a brilliant Daddy and we will be fine I hope.  But today, this second and minute and hour, it doesn't feel fair.  I hate how it felt to sit in that waiting room back in 2007 and be called in to hear a diagnosis that I didn't understand.  To have had to learn genetics 101 in order to explain it to every doctor we see and all the well meaning people in the circles of our lives who ask. To never really be allowed a day off, or for my brain to atrophy properly into relaxation for more than a very short period of time.

And still, most painfully and ever present in our lives, to have to justify why I am this emotional/thankful/unable to break the cord even though in everyone else's eyes he seems just like all their children.

But then I breathe, sniff back the emotions and come back to today, now.  All the good stuff and all the work I have done to stay strong, that we have done to love and come together, and how determined I am that this will be the making of us all and not the breaking.

Every year it's different and yet every year it is exactly the same as well. So today I accept this marker, this timeline back to then.  This thread of pain and tears and hope and love.

The stuff of life itself

Olivia Colman, Romola Garai and me...thank you BAFTA

I am writing this post as a big smiling shout out to my friends Fran and Rachel from Portobello Parties www.portobelloparties.com for the following reasons:

1.  For having immaculate style and choosing to channel that into a fantastic little clothes business that brings Portobello designers to my (your) door.
2.  For being my friends and living round the corner for when at the last minute I realise I need to look nice for something.
3.  For knowing what will suit me despite my angst-ridden protestations.

A week and a half ago I suddenly realised that besides being excited to be going to the BAFTA's to support the two nominations for Homeland, that I would actually have to wear something nice when I got there.  PP came to the rescue as always, at the last minute, with suggestions for me about how to do black tie as effortlessly as possible.

With husband away and childcare thin on the ground and all the other non-glamorous aspects of my behind-the-scenes life, I knew I wouldn't have time to stare in the mirror and doubt myself while wearing any kind of long, grown up or ostentatious dress.

Fran suggested a fantastic bottle green faux leather mini with scalloped hem that she had on the rails, which, coupled with black posh tights and my favourite high heeled shoe boots would let me go rock chick but appropriate. My colleagues and companions for the night were a tall effortlessly chic blonde woman with Viking roots, and a handsome gay man comfortable wherever you drop him.  I knew that he would be taking photos and streaming us live from the cab, carpet and reception and that our shit hot MarComs back at Keshet would send those images "out there".  So while I did feel a little bit White Swan as the material squashed down my ample boobage, I trusted my PP stylists and took the plunge.

Cut to Sunday afternoon, kids and dog deposited with family allowing me an hour to get ready, there I was, striding happily down the red carpet, in the drizzling rain. I felt very chic in my dress, Vintage tux jacket from the mother in law, awesome vintage Chanel drawstring bag from sister in law and a dash of smoky eye and red lippy from me.

Here is a glimpse of the dress that the PP girls knew would be perfect for me and the occasion.  In it you will see my boss looking as he says "quite powerful like a movie mogul, with me his glamorous starlet a pace behind".
 

I have let him get away with this hilarious channeling of Hollywood sexism because he also said I looked very Siouxsie Sioux.  Plus I secretly like the idea, as I near the grand age of 41, of being any kind of "-let".

So thanks PP friends who allowed me to sit pretty while watching Olivia Colman be charming and funny, Graham Norton be primetime naughty and Romola Garai talk about her vaginal stitches.

My husband hopes that I win one of those lovely bronze faces one day, which may or may not come to pass, but either way I know I'll have my outfit sorted if it does.