Sunday, 26 January 2014

Blown Away by Empathy

Last week my eldest son rendered me speechless over a baked potato dinner that I managed to get home early to join the kids for.

Jacob is 9 and romping through the forest of testosterone faster than any of us had expected, but still managing to keep his sweet nature as he grows an inch a week.  Obviously quite often his jaw sets and his muscles harden and the big boy in him comes out to say hello.  When that happens I'm not really allowed to hold his hand too much on the street or give him a big hug outside school and the rules are changing while we find our way along.  So he is still my soft boy in private and I therefore assumed that we had seen the last of him being that gentle in the open while he navigated these new waters.

Back to the conversation at dinner.  We talked about what the boys had done that day and he mentioned a lesson in PHSE that picked up on an Assembly his teacher had done about goals, citing Dame Kelly Holmes and all she had overcome and achieved.

In the lesson the teacher asked about any goals the class had or could think of that were similar and he said "I told them about you Mummy".

When I asked him to tell me what he meant he said, and I paraphrase:

"Well you were having hard time when Louis was diagnosed and so ill as a baby. And Daddy was away working a lot and you had me to look after too.  But you worked really hard to achieve your goals, which were to make sure that you had someone to help look after me all the times that you had to go to hospital. And you wanted to keep us both safe."

I just stared at him, genuinely speechless at what he had felt, intuited and said so publicly in a lesson at school with 14 other boys just itching I'm sure to take the mickey.

I reached out and squeezed his hand and all I could say was "you are an amazing boy"

He said the teacher followed up asking him, sensitively I'm happy to add, to tell a bit about his little brother and asking if any of his friends knew why he had been so poorly.  Louis proudly grinned at the table as Jacob reeled off all of the friends that had put their hands up and knew about him and his special DNA.

Once I gathered myself and found my voice, I told J that it was amazing to be able to think about me and how I must have felt.  To be able to take what I have spoken of about their early years and intuit how it must have felt for me as a parent.

I told him it was amazing as a 9 year old, as a boy and most especially as a 9 year old boy.

I also said I would like to blog about it if he didn't mind, and it has taken me nearly a week in hope that the emotions have subsided a little.

Needless to say I am clearly snivelling as I type, so will press send quickly and end by saying all that there is to say.

I am a very lucky Mummy.  

Tuesday, 17 December 2013

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

Sunday, 10 November 2013

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.






Sunday, 27 October 2013

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 4th 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.   

Monday, 21 October 2013

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.







Friday, 30 August 2013

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

Wednesday, 21 August 2013

#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