Coming out to say hello

Last Friday I did something new for us, an extension of this blog (that until 6 months or so ago only my Facebook friends and a few others read) and my Facebook family....I outed us.  As a "special" family, and not just me but all of us.  

I am very grateful to my boys (all three of them) for being so cool about this new phase of openness, attached to my wanting to fundraise and do more for our wonderful charity www.chromosome18eur.org.

We've come a long way and continue on our journey but it's nice to be standing there as a family, albeit with patient and silent partners to my noise and their assurances that boundaries are set and will be respected.

Here is the article that shifted us out of the shadows, for a newspaper I grew up reading and am happy to support them as they are choosing to support us.

SON'S DIAGNOSIS CHANGED MY DNA FOR EVER

LOVING FAMILY: Sara and husband Daniel with sons Louis, left, and Jacob TELEVISION executive Sara Johnson juggles her busy working life with looking after two children, one of whom suffers from two rare genetic disorders. Manchester-born Sara, who is married to Daniel Jackson, talks about 'the other me'AN article in the Jewish Telegraph last month about my job at TV company Keshet UK hinted a little about what happens when I leave Soho and go home to Finchley. While I may look like any other parent who treads the line balancing the chaos of work and home, it's not quite as simple in our house. Alongside parenting our children - one older sibling and his genetically magical little brother - I also help to run a charity that brings support to the few other families out there like us. Our son Louis has two very rare genetic disorders, chromosomal anomalies, the one I know most about being 18p deletion. In basic genetics, this means that in every cell in his body he's missing a chunk of genes from Chromosome 18 and has a few extra on another chromosome too. So the delicate balance of genes that we all have, that dictate how we grow and function and when things should switch on and off, is not quite the same in him. While he is currently, thankfully, a happy and healthy seven-year-old, the first few years of his life were fraught with medical issues and confusion. It is hard to look back now and remember exactly how it felt to have this very poorly baby, how confusing everything was before we received his diagnosis at nine months and immediately after when they said they couldn't tell us much about it. As I sometimes say in a blog I started to write a few years into this new life, when I got his diagnosis and all the confusion it brought, my DNA changed forever too. Along the way many doctors got it wrong, but a precious few didn't. Like the man at Great Ormond Street who listened and looked and decided to run the tests that led to diagnosis. And the paediatric registrar in A&E who told me one Boxing Day, as we sat there with unexplained spots, temperature and with him in respiratory distress: "I am always extra careful with a premature baby or one with genetic anomalies - you can't assume what should happen will or what can't happen won't." They were both right and that is why I am not and won't ever be a typical mum. I spent the first 18 months of my boy's life learning, questioning, noticing, self-diagnosing - making sense of the great big black hole in front of us that I needed desperately to fill. Through the amazing charity Unique, I was directed, after diagnosis, to The Chromosome 18 Registry and Research Society website. Though I didn't know it at the time, things started to get better. As I nervously tried reaching out for help, I got by return email heartfelt messages from the few hundred parents around the world who had been there before me. It was these amazing parents who helped me numbly float through the trauma of having a sick baby that nobody could shed light on, and not be scared of my return to work in a full-time demanding job in television. These mums were managing, coping with all that a parent to a special child is expected to be able to do. They showed me that they too had to juggle countless medical issues, from cardiac, breathing, orthopaedic, ENT appointments and more, and led by example how to monitor our son from head to toe, part of the new normal that is still a big part of our lives. In 2010, my mum Sheila, Louis and I travelled to Glasgow for the first conference of the European charity connected to the clinical Chromosome 18 study in Texas. I spent the weekend feeling like I belonged to this group of strangers, close to tears throughout at how lucky my boy seemed to be. Most importantly I came home armed with information about what doctors I needed and how to get the best from the system. I also found myself thinking of what I could do to help, how I could bring my skills to this small and feisty group of hard-working parents and carers. So at 2012's conference in Milan, there I was on the committee helping to run things, the excitable English one on the microphone. There without my family, but at the heart of this amazing weekend of belonging and information. In July 2014, when we descend on the Novotel in Worsley, Salford, to welcome parents both familiar and new, I will be at the heart of it again, but this time with my family, in my hometown and with a very clear sense of why I fiercely guard this space in my life. I am lucky enough that my boy can walk, talk, run and learn much like anyone else his age, with his hardy body and his beautiful brain doing their very best. And we have chosen to see this life of his and ours as full of potential, despite any information, or lack of information, to the contrary. I am proud to join the tiny group of families around the world who tirelessly fundraise to make our conferences possible. Proud to help my fellow committee members from Scotland, Italy, Greece, Germany and the UK who find time to plan and ship in medical professionals, translation booths, activities for the kids and all that we need to bring our conference to life. Like the family in Finchley with whom I have just shared my medical notes; who had a baby who also stopped breathing when she slept; who gratefully told the doctors about our kids and their hidden huge tonsils; who pushed for the sleep study as I told her she could; who sat and watched the recovery from the tonsillectomy; and who have now had a full night's sleep knowing everyone in the house is breathing as they should. This is the magic of knowledge and connections and this is why I do what I do. So that is my pattern. Work, parent, blog (sarajinbetween.blogspot.com), tweet (@MrsSarajj), fundraise (www.chromosome18eur.org), help, hope and reach out to find others who must be out there. Contact Sara via mcohen@jewishtelegraph.com

Decades and Dad

Tonight I lit my 10th candle of remembrance since my lovely Daddy passed away.  While December 2nd is usually the time that floors me on this subject, this year it is the candle lighting that has done it and I have spent the day being quiet and sleepy, helped by the kids being at classes this morning and then hubby taking them to the football match without me.

This allowed me to pass the time half conscious, reading without taking much in, happy in the silence of the house, vaguely thinking about eating and drinking and what to feed everyone later.  And looking through the box of letters and emails and nic-nacs that I have from my Dad.

As I put on my Facebook update today, alongside one of the last and happiest photos I have of me and him, my Dad has missed out on all of the things that define me as me.  His death heralded the start of all that came next and culminated in who I am now - A mum, a mum of two boys, a mum of two boys one of whom is genetically complex, a working mum of two boys, a working mum whose career is in TV.

Everything I am stems from being a mum, the one thing that I was trying (and failing) to be when my Dad was still alive.  One of the things that he and I would argue about, when I talked of what would happen if and when I got pregnant, was my assertion that I wouldn't give up my career and would continue to work.  He disagreed, quoting as I re-read today, the birds and bees and nature to strengthen his argument about why things have always been as they were.  We agreed to disagree on this, as we did on so many things.  My feminist egalitarian views were well honed in my conversations with my dear old fashioned Daddy.

I was right, as I knew I would be though, about becoming a working mum.  As my last post shows, I have always worked and by living in London with a career that I fought hard to get and then keep, I can't see how I could have done it differently.  But nowadays, it's the mum bit of the working mum label that defines me, not the other.  So maybe my Dad did know best.

I remember when my career used to define me.  I spent a good six months talking about it to an amazing therapist, not long after my gorgeous friend Charlotte suddenly died and 6 months after I lost my Dad.  When I left Sky and took a step back soon after to look after my poorly little baby, when people asked what I did, I used to say what I used to be. "I used to run drama at Sky, I used to be a TV exec".  Once I realised I was doing this, and was genuinely unsure if I would be able to make it back to that career and life, I stopped saying that and instead tried to work out who was left after work had gone, who stared back at me in the mirror every morning.

As I also said in my last post, I am lucky to be back in the TV game with a lovely job and a good balance.  As part of my current role, on a recent work trip I got to challenge myself with taking part in a conference, met a couple of amazing and inspirational TV people, and listened to Shimon Peres open his mind and heart in an audience I will never forget.

On my journey to this trip I lost a talisman that I had carried around with me since 2003.  It was a beautifully embroidered handkerchief from my grandma and there was on it a little crystal badge that my mum gave me when I was 18, and a tie pin I took from my Dad's bedside pot after he had died, which said Mazel (luck in Hebrew) on it.

Over the years I had lost and found this lovely thing and in recent times it lived in my travel bag. Standing in the passport queue I realised it had fallen from my pocket, and as I worked out how I felt, I realised I was sanguine and sad.  Because in the dark of that flight, as I transferred it from bag to pocket, I had a little meditation and moment, realising that life wasn't like it was back when I first brought those three things together.

That I was no longer the child needing mazel and protection from my parents.  That instead I am the parent giving that security and love to my boys, and I love my Mum with the protection of a daughter and equal, not merely a child.

I mourn my father's loss while knowing that this life I have built doesn't have a chair put aside for him, but I thank and credit him for something that he did in his death that was more important than either of us could have realised.

At the moment of his death, after those last hours of sitting with him and trying not to match his breathing as it slowed, I told him to let go and that we would all be fine.  With those words and as I watched him slip away, something hardened in me that has never softened since.

He gave me the gift of coping, of not falling apart, even when your life has turned on a penny.  I barely cried and instead put on a whole new costume of maturity that I am absolutely sure is the reason I got through the horrible 6 or 7 years that followed that night back in December 2003.

My Dad helped me grow up enough to be this strong, capable mum that I need to be for my boys, the wife to my man, the sister to my siblings, the daughter to my Mum, the Sara to my friends and the me for me.

He did that, unfortunately in death rather than helping me along in life as it played out.  A last sacrifice that allows me gently miss what I feel I never really had but knowing that it all led to that moment.

People have said then as they do now, that he would be proud of me, and I agree.
He would be proud of my strength through the crappy stuff and enjoy the headlines and announcements of the work stuff along the way.  He would love my boys and marvel at their hardiness.  He would I hope not be squeamish and fill me with support and wisdom at the trials of the "special mum" part of me.  He would also hate so much of what and how we have decided to do things and I know that we would have clocked up many more rows that currently sit on my tally.

I will never forget all that has happened in this last decade since my Dad died, but I am so happy to be moving on from it.  To be moving forwards sane, happy, health and in a purple patch for work and home.

So thank you Daddy, for all you gave me in your life, and all the coping I was forced to do in your death.  You helped to make me who I am and me and my boys carry a little of you with us wherever we go.

Full Time, Part Time, Total Eclipse - A Decade of Working Mum Life

Forgive the blatant title theft from that fantastic Jaffa Cake ad from the *mumble* late 1990s, but as I start the second year of my 4^th decade, I realize that in the last decade of my career I have been full time, part time and unemployed in various measures. 

Having worked in TV drama (as Sara Johnson) since graduation, by 30 I had risen to the giddy heights of Head of Drama at BSkyB.  I had my first child while there and returned full time after 6 months of oft-interrupted maternity leave. When I left that job I took a consulting contract 4 days a week for a big International TV company, across which time I had a very test-ridden and stressful second pregnancy.  I was also refurbishing a house at the time (seriously, why do we do this extreme version of nesting?) but it still all felt fairly doable.

When my second boy was born he became ill very quickly and within a horribly difficult year had been diagnosed with a very rare genetic disorder that readers of this blog will be aware of.  In this period of my career I struggled to see if there was any way to continue working in TV as the mother of a potentially very disabled and confirmedly medically complicated little boy.  This is when I stumbled upon the organisation Women Like Us and took comfort by searching weekly for jobs both in my chosen field, and outside in Plan B Land, should all else fail.

After accepting that I was trained for little else and simply had to make TV work for me again, I gathered my fragile confidence and after 18 months effectively out of the game, got lucky in a full time Head of Development job for a drama production company.  

I accepted the post full time and when I look back, have no idea how I managed while coping with the medical emergencies and traumas of my baby. Leaving meetings to speak about heart problems and breathing issues, learning what the doctors couldn’t tell me about the complications of my boy, playing au pair roulette and running my life by remote control...trying desperately to be all things to everyone while still managing to have a career.

Another 5 years on and I have just started a part time more high profile job, as the Head of Scripted for a UK production company backed by the makers of Prisoner of War/Homeland.  I have an understanding boss who knows the benefits of hiring women in their late 30’s + and the flexibility required for that. I have two thankfully healthy kids and am finally off the red alert that dominated so much of my last decade concerning my youngest.  Life is by no means typical or easy but compared to the last decade, I am lighter of foot and appreciate every milestone we all achieve.

I know that I am lucky to do this present job 3 days a week and pragmatically am ready to consider adding another day should the need arise, but for now I both relish and desperately need that two day break from being Super Sara:  

To attend clinic appointments guilt-free

To speak to teachers who know who I am because of the times I am able to go in and help

To continue my work as a parent advocate and writer on behalf of the charities that help me to retain my sanity

And honestly to do some of the things that capable women shouldn’t admit to needing - walking slowly from chore to chore; staring into space in a supermarket queue; not looking in the mirror before leaving the house; being a bit shouty when working out how to manage lists for the day/week/month ahead and sometimes just crumbling a little and being not at all fabulous, but in private.

Above all else I need time to talk, learn from and counsel the amazing women in my ever-growing network from the last 20 years of my career.  Knowing that in this time of calm for me, anything I do will come back to me in spades as and when I need it. 

I know how to look for the pioneers to inspire me in all the separate parts of my life and I love that there are more places out there to find them.  

You see women like you and me need women like us to help us to keep on keeping on.  Either full time, part time or somewhere in between.   

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.

Mother's Day Dilemma

I've been a little angst ridden about writing this post, due to (possibly misplaced) loyalty and the uncertainty of how I feel and where to write about it.

In the end I have decided to come here, because it is here that I am a mother, and the mother in me is the one who needs to air the strange betrayal and disappointment I feel at a former boss's rant that appeared in a Sunday newspaper this week.

I am generally very unspecific about work when on social media, happy to be positive of course but wanting always to be appropriate and professional, especially when things aren't quite going well. What I say between family and friends is more like the truth and how I feel but I rarely go into print as it were when I am having a hard time.

When my uncle texted me on Sunday morning to say that the woman I used to work for had been ranting in the newspapers, I assumed that she would be airing her views and frustrations that she is well known for about today's TV industry.  So I thought no more about it and got on with my day.  Later on, in a quiet moment with smartphone in hand, I decided to catch up with the news and remembered to have a look for the article.
I was shocked and upset at what I found.

After nearly 5 years of working with this woman, despite any conflict or upset that occurred across that time, I knew and admired her as a mother, and will forever be thankful for how I was allowed to be the mother I have to be when I worked for her.  On a personal level she was someone who I had seen to be kind and instinctive, not just with my own child but also in her stories and experiences around other non typical kids.

In this article in the newspaper, in a moment of pique talking about her current career at an international conference, she used the word "retards" to describe one UK broadcaster's employees.

I hate this word, as do many people and not just those with family members who are "special" in their needs and development.  To date I haven't joined a campaign or made a big public show of my feelings because it's that public bandwagon thing that I shy away from.  I am very clear when you meet me about my non-acceptance of intolerance and hatred, and will speak up without a moment's hesitation, but online it takes a lot to move me.  At least it did.

With one small description, which will I'm sure be denied as having been said at all, I felt betrayed and hurt as a mother and specifically one who had shared my pain in quiet moments about personal feelings surrounding my life with a complex child.

I don't think she would have used that word if not caught up in whatever moment she was in, and I don't wish her any ill will or aggression in a response to this.  But I do feel palpably hurt for myself and other people who have this word thrown at them, their child, their sibling, anyone, and wish fervently that people thought a little before opening their mouths in that way.

As I followed the story, I became incredulous that it hadn't been picked up by any special interest movements here in the UK, which is when I remembered to look at the Facebook page Spread the Word to End the Word.  As I scrolled down the homepage of this sturdy group, I found just one comment from one person saying had anyone seen the article, and wasn't it a shame, and the comment had no likes or comments in response.

No hoopla, no guns blazing, just disappointment.

In a way that is good I suppose, but also it really isn't. Words have great power and we all make mistakes with them across our lives.  This one offensive word adds to many others that are used and reused to batter and insult people who often can't defend themselves and the heartbroken families who spend far too much time doing so.  I believe it is the duty of writers and public figures to think before they speak to be an inspiration to those who might not know they have to.

So here I am publicly having a personal response, one in which I am frowning as I write, uncomfortable at the disloyalty I feel, but resolute in why I have to speak out.  I will also frown when I press post and then when I share it should I choose to, because I truly don't want to make waves or cause problems, because my feelings persist, even as I come to the end of writing them out.

Before finishing the post, I have just paused and gone back to Facebook to "like" that feisty group that many of my special mummy friends and other good people support.

And this at last has finally given me something to smile about.

Getting back on the horse

Ooh it feels strange to be back on blogspot, back in front of the screen, typing away, thinking what to say, what's been happening, where my head is at and not allowing myself to care if it is at all interesting.

...because this will be a post of rambles and shambles but one that fulfils an important role.  Namely me getting back to writing and introspection and writing about introspection, which kind of makes the introspection mean nothing at all, due to going public with it.

Anyway, here is a quick overview of life since June last year.

I have a brand spanking new job full of positive energy and exciting prospects and a little bit more of the high profile TV me that used to exist before the special little people who are asleep in the other room came into my life.  Leaving the old job was a bit toxic from one corner but I do miss the others who I was sad to leave.  Getting the new job happened faster than ever before and working 3 days a week due to a very understanding and great new boss, means that when seepage occurs via my smartphone across the non working days, I don't mind at all.

I have finally travelled to the other side of the world to see my darling wonderful sister and nieces and brother in law and their home and sheep and veggie patches and chickens and swimming pool and trees and hills and all.  And it was amazing.  Amazing even despite a fraudulent travel agent taking our money back in February and not giving us flights, meaning we had to book everything again in November for our trip the following month.  I may have to stand up in court one day soon and tell a jury and judge exactly how stressful those last few months of "will we won't we get there" were, and actually add up how much money we lost and had to pay out....but wow, how lucky to be in a stable enough time of our lives to still be able to get there and make the most of every minute we had.

I am also keeping my pledge to look after myself.   Eating well, checking out medical stuff that I have been ignoring for some time, and exercising a little in a most enjoyable way.  In fact the two fabulous women I exercise with every week are the impetus for me writing this post.  As we giggle, snort and "inhale hold and exhale" our way through Wednesday nights, we always have time to chat and are slowly peeking into each others' lives.  It touches me when people respond to what I write and it's been so long since I let that bit of me out to play, so Ali thanks for inspiring me to come back and Jo, here is what we were talking about.

I haven't written anything in a long time, journal, blog, books, articles, but some of the old stuff that I created and still think about is beginning to surface again.  Watch this space for when I announce the emerging of a very special gang of kids and the adventures they have, because they are having a new home readied for them right now.

I've saved the best update of all for last, the one that comes from my heart and home.   Me and my hubby and beautiful boys are in a calm phase of life.  Work is good and busy for both of us and we are coping with how often we are not in the same country.  We are making hay while the sun shines, taking full advantage of the progress and development and good health of both our boys.  Junior school suits the big one, testosterone is still allowing him to be sensitive and sweet and kind while made of rock and granite under his growing limbs.  My little magic man has had a wonderful year, all health stuff under control, some getting better with age, new stuff arriving that doesn't scare us, still so much luckier and more successful than I had ever dared to dream.

My writing bones are a bit stiff and achey so I think I'm going to leave my comeback effort here.  It's nice to be back and I look forward to finding my voice again, working out what Sara circa 2013 wants to say and think and feel.

Hope to see you here as I work it out x