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

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.