Sunday, 14 September 2014

Trans-season stock take


The kids are back at school, our lovely 2 week holiday is a distant memory and I have plunged back into the chaos of work and homework and travel and running my house and our lives - all those daily activities that stop too much free thinking.  Most other years at this time, I wouldn't lift my head again until around November.

Only this time, this season, as the summer wanes and autumn waits in the wings, I find myself consolidating my recent thinking and rethinking, and instead of packing it away in a drawer, seem to have stumbled into other methods.  All very introspective, and instinctive, but so far really very satisfying.

In practice, I have tidied the kids clothes and bought the new shoes and filled and donated the charity bags.  I have cooked us through the freezer goods and stock taken the cupboards and at some point now that birthday season is here, the books and toys will get a good old shake down too.

But alongside, keeping company with my summer of assessing my life and what I give to the world, I seem to have set up a whole new therapy system, and am jumping in and out of it almost without really being conscious of doing so.

For example the other week.  We finally realised it was time to become a two car family, in order to run the chaotic weekend of football and classes and the gradual separating of our boys' activities.  My response to this was quite bizarre, driven by a latent fear of stretching ourselves financially.

Having spoken out loud my concerns, I proceeded to, slightly manically, clear out my entire wardrobe.  I removed all the unworn, unloved/unloveable items, clearing the mess at the bottom, rehanging, organising so I can see what I have which would allow me to dress how I feel.  Next the shoe shelf, same there, trying to fight this reluctant shopper who doesn't throw anything away until it falls apart.

To my surprise, this clearing process helped me to calm down and relax about the car almost the minute I had finished it, even though consciously I didn't think about any specifics while I cleared.

So yesterday, after a busy working week of disturbed sleep and a little perambulatory night-time action, I took advantage of all my boys having a bonus trip to the Emirates, and tackled my bathroom cabinet, jewellery and cosmetics.  Again, being a landfill phobic and hater of waste, in addition to my everlasting search for the creams that will deal with the stressy dry bits that pop up, there were bottles and tubes and pots everywhere.

I felt lighter once I had finished as if I had cleared out my head as well as my cupboard.
As I draped my 'Dream' bracelet designed and bought by my wonderful friend and creative partner Karen, from the bedside light, everything felt in place.

As I type this, thinking back on a blissful few hours of sorting, remembering, looking forward and consolidating what I need or still want, I now have order in my bathroom, in my drawers and wardrobe, and knowledge of the jewellery that I have been given, bought and kept over my 42 years.

So if I want to wear my dad's ring, because I feel like having him close, I know where it is.  If I want to think of my sister and choose one of the many crystals she has bought me over the years, I can find them easily.

I can dress and accessorise and moisturise according to my instinct and mood when I wake.  And while this feels materialistic and a little bit mad, it is, as it turns out...

EXACTLY WHAT I NEED TO DO RIGHT NOW!

With the evolving of my physiology and the realisation of time ticking, I am opening up the bag that contains a tangle of Sara's, tidied carefully away over the years, and poking my head in just to see if any of them want to come up for air.

The kids book writer, the blogger, the advocate, the teacher, the storyteller...it seems they all might need the chance to check what, if anything, we might want to do differently, in this next phase of my life.

I am excited at the thought of gradually working my way through the house, trying to make sense of the material things I have and what lies behind them in memories and also potential.

So if your head feels a little messy as we head back into term time, I highly recommend taking to your drawers and finding some hidden sanity.  Enjoying the process of removing, assessing, rethinking, accepting, and putting back only what you need from this point on.

I can't wait for my next free hour.
Can you?



Sunday, 22 June 2014

What's in a name

I appeared on the website of an amazing children's charity the other week, an organisation I am delighted to have met while working on the floor beneath them for the last year in Soho.

As you will notice when you click onto the link at the bottom, I appear in my full and fake double barrelled glory, a mark of it being a true mix of Sara at work and Sara the mum.  This joining of my maiden and married names only really occurs on my email and in happy memories of conversations with my friends at University, laughing at what would happen should I, Sara Johnson, end up marrying my then new boyfriend Daniel Jackson.

15 years on from our wedding, and really, honestly, I have thought many times about changing my name for good.  I resisted at the start as I was still establishing myself in my career and we married only a few years into that career path.  Also I felt a great deal of pride in giving my family the nachas of their little girl appearing in interviews or in credits on screen.

In changing my passport, bank account and everything outside of work to my married name, it allowed us both to be lighthearted whenever Dan said "who is Sara Johnson?" as the credits rolled.  So the delineation of the names was very clear for at least a decade:

TV Exec, BAFTA membership card and most of the interviews or press = Johnson.
School, medical, mum and latterly blogger, children's story writer and home = Jackson.

As I get older and my role as media representative for Ch 18 Europe grows, I am bringing the two sides of me together in my life, mind and ambitions and there is a blurring of the borders.  As this occurs I can't help but feel increasingly schizophrenic, insisting as I am on this nominal separation.  Even the shows I am working on in TV land bring the mum into the room far more than I have ever allowed to happen before.

There is a whiff of a shift in intent and purpose around me right now and this post says a lot because all I intended was to highlight the link to the interview without much fanfare.

I suppose what it shows is that I am admitting to have noticed the mix of all the me's in my peripheral vision.  All the Sara's, the TV exec and the charity advocate and the mum and the woman are slowly merging and it's not as scary as I once thought it might be.

How that might grow or what comes next who knows, but until then, please click on this link and have a look at the gorgeous charity that does so much wonderful work above Sara Johnson's head every day.

Daytrippers Five Minutes with...me

Wednesday, 4 June 2014

My Seven Year Itch

I like coming back here on June 4th each year, writing, thinking, another year on from the day our special boy was diagnosed as having magic DNA.

As I've said before, I will never be able to forget the run up to diagnosis and that awful lonely day 7 years ago, when they told me the words that would prove to be so momentous to our lives.
18p deletion.

It is particularly poignant that this week is the first ever Rare Chromosome Disorder Awareness Week, highlighted by the amazing charity Unique. The people who reached out then and still quietly sit, ready for when I go back and ask, is there anyone else on the records like him yet?

As fortunate as I now feel, I know that I will never act like a normal parent. I will also never underestimate how lucky we all are to still be a family, still be a happy healthy foursome and still be living a relatively normal life.

And I know something very strongly - that if it all gets harder from here and normality slips away again, how grateful I am for having been taken off red alert for a while, allowing me to rebuild, heal and refill my stock of energy, tenaciousness and charm.

Above all tonight I feel lucky to have our amazing 7 year old, who plays for the local cricket team, and gets past the first hurdle in the local football team trials, who regales me with facts about aluminium and orang-utans and pokemon and football, who hoots with laughter and charms us all with his smiles and happy approach to life.  Who works harder to do all the things that he does that make him look so typical, and yet never really understands what a hero he is.

From that terribly sick baby to someone still extremely complicated on paper, what sings and shouts out loud right now is him, our successful, happy, healthy and glorious boy.

There will always be the hard stuff behind the sparkles and smiles. 7 years on and into a new phase of development, things ARE changing, slowly, imperceptibly maybe, and I can feel the sands shifting.

The new quiet in the playground each morning, a result of a school trip that perhaps was too much for him and which has left him struggling to hold his own with his confident loud friends.

Or our trip to hospital last week and the paediatrician who told me twice how kind I was to be so patient in repeating our story, and filling him in on who we see for what and why.  How is it that I hadn't even noticed that three years on from finally getting a paediatrician to help, I have not seen the same person twice.

Which means that there is still nobody but me who can draw a line through all the different things that need attention.  This one crappy glitch in the system is something that, if I think about it too long, brings the tears and tiredness to the forefront because it is all still up to me....

To say yes to every medical study, no matter how upsetting the things that get thrown up have been.
To ask for changes and help in our daily treatment, but to have to wait for 6 months to follow up on any action points and not know who will be listening.
To see his phobia of needles suddenly require a play therapist to help.
To hear words like social motivation and issues and flags used in the same sentence and not know who to talk to about it.
To search for innovative ways to replicate physiotherapy for the low muscle tone issues that aren't really going away.
To see that the anxiety is loud enough for even his strong daddy to resort to the mantras and chants that I have been whispering into his ears for as long as I can remember.

I am brave and I can do it

We are brave and we are doing it

7 years on and we're still doing it.

Grateful, tired, happy and hopeful are we.













Friday, 25 April 2014

(Don't) Ask A Busy Woman

Yes it is self flagellation time again as I start with an apology for all the blog posts I have been doing in my head since last I was here.

The one about taking on the huge task of organising a big fundraising dinner.
The one about doing so with just one other busy working mum of a special boy like me
The one about doing this while trying to balance work and home and the things that make me glow like helping at school and reaching out to other Ch18 families and raising money
The one about being so proud of our event, of everyone who supported in all the many ways they did including spending the evening with us.
The one about raising enough funds to fill the gap for this year's conference and more on top to set us up for next time.
The one about being so enormously proud of Chromosome 18's new ambassador Eve Rushmer (more about her another time for sure!)
The one about going to Paris the day after abovesaid event, breaking my shoe as I ran for the Eurostar, spilling coffee on my dress as I wobbled down the carriages, and still rocking the day because of the amazing Portobello Style dress I was wearing
The one about my darling sister and family coming to stay a few days after and it all feeling so normal to be rattling around my house together, them and us, her kids and mine
The one about going to Manchester for Passover and spending proper gorgeous family time with my extended family of mum, siblings, aunts, uncles, family friends, 1st cousins, 1st cousins once removed (that rule really confuses me fyi) second cousins and all the in between.
The one about needing to take stock and wind down again, making my days off days off, walking, exercising, getting well, shaking off the low lying illnesses I have been ignoring.
The one about being scared of winding down because I have completely forgotten how to relax and not feel guilty about only achieving a few things a day outside of the ordinary

And the one today.  About having walked around slowly having started the day attending my big son's assembly, then paid in some fundraised cheques, walked to the pet store and the health food shop, walked the dog and squeezed in a work call and some emails. That for me is slow and happy and a move towards a calmer life.

Next up, my relief at having secured new childcare and untensed my shoulders a little knowing that all we have to do now is make it work again with all the changes going on in our lives, house, and the little people in it.

Thanks for letting me catch you up.
Whimsy and humour and proper writing to follow now that the backlog has been outed

Happy Friday all
x

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.