tag:blogger.com,1999:blog-87464739777077357842024-03-13T11:25:10.308+00:00Somewhere In BetweenI'm Sara J, TV exec and mother to two lovely boys, one with two very rare and magical genetic disorders.
I always hoped to be happy - to try to have a career, a life and a family.
To "have it all".
So as life throws its punches, I've donned my protective clothing and am finding my way through this course I've chosen.
Having It All.
A Happy Medium.
Somewhere In Between.Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.comBlogger114125tag:blogger.com,1999:blog-8746473977707735784.post-2587763476237682932015-12-19T17:33:00.002+00:002015-12-19T17:33:31.009+00:00Catching a Wave of Thought In This Headlong Race To The End of the Year<div dir="ltr" style="text-align: left;" trbidi="on">
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I have a couple of drafts of writing saved that I have been trying to post for the last few months. My usual rambling posts about thoughts and feelings, as life hurtles along in a meteor shower of work and home and exams and tiredness and business deals and more.</div>
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Every time I find I have more than a few moments of time and the accompanying necessary headspace to sit at my laptop, another week has passed stuffed with events and happenings. So when I read the drafts and half written sentences that sit in my drafts, the relevance of each has fallen away.</div>
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Which is why I am forcing out this catch up post. Son 1 is doing a practice paper upstairs after a fun few hours playing with a friend. Son 2 is lying on his bed, slowly inhabiting his no longer shared room, listening to big brother's music on headphones. And D is napping during this lazy sort of active day, with the dog on his legs keeping him immobile as he sleeps.</div>
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I reckon I can be here for at least 20 minutes without any sport blaring out from a phone, TV or radio, so here I go...</div>
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<i>First</i></div>
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It is 12 years since we lost my Daddy, and with the world news punctuated by terror and brutality, I noticed that me, my siblings and mum seemed to react in the same slightly different way. We sent each other photographs that we have in our houses and drawers, of happy times, seeing Dad smile and causing us all to do the same. </div>
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Because perhaps we all felt as I do....that while I will always miss having a daddy and grandpa for my boys, and will take the time to mourn quietly during Yartzheit, or December 2nd, or both, I also know that he got to live a full life in the years that he had and was lucky to die peacefully with his family around him and surrounded by love. </div>
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So my candle on the shelf this year looked fuller and brighter and reflected how I felt</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFUCulSPP39HW-2OHjeMNGJifnXiLefKoyf05KbxI1ybZ2kZ9Hd9FZl_62F8fQYsKBIBZ_hGwk9bbPk6td6jmnaguU36oA4oFSg-Z0XQQ1zhFklj3g2AG5UXf7OYVR3Md7rICzxpQKu84/s1600/IMG_5253.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFUCulSPP39HW-2OHjeMNGJifnXiLefKoyf05KbxI1ybZ2kZ9Hd9FZl_62F8fQYsKBIBZ_hGwk9bbPk6td6jmnaguU36oA4oFSg-Z0XQQ1zhFklj3g2AG5UXf7OYVR3Md7rICzxpQKu84/s320/IMG_5253.JPG" width="320" /></a></div>
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<i>Secondly</i></div>
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<span style="text-align: center;">Back in November I had our annual paediatrics appt for my boy. I had been thinking that I didn't really have that many things to update on or ask for help with. Medically we have had a blinder of a year and all problems have been dealt with quickly and cleanly. School has been interesting with a class change but we have a lot of wonderful help, and I wasn't quite sure how to make the most of the appointment. </span></div>
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<span style="text-align: center;">And then.....he got picked to play in a tag rugby tournament, and I made a landmark ruling. That I would postpone his appointment, and go with him and his peers to the tournament, revelling in the fact that my boy, nine years on from the scary diagnosis, is missing school to spend a day playing tag rugby at one of his favourite places, rather than at the hospital. </span></div>
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<span style="text-align: center;">Now if that isn't special and worth celebrating, I'm not sure what is.</span></div>
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<i>Thirdly</i></div>
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I have been experiencing a sort of "gentle battering" of blue moments of late. </div>
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The effect of 'end of year tiredness', some actual life events of complexity (like work wobbles and business deals) and various first world problems (broken curtains and a newly sick-stained carpet, boxes piled from room moves and expensive vet bills and the creative activities of my days off a distant memory while we live in an 11+ household, where hormones fly up or down depending on who you are looking at)</div>
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I do know what you might be thinking. It's all very normal. And it is, of course, because I am in my 40s, I work, I am married and I have kids and a pet and family.</div>
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While I realise I can't solve the "problems", or indeed always control my wobbly emotions and sensitivities, I can just keep doing my best knowing it's all quite fine really, and we are lucky and lucky and lucky in numerous and varied ways.</div>
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So these last two pictures are a) super cute and b) here to remind me that both spiky and fluffy both have something to offer which is c) exactly just like life</div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkc7tCmdOkPX-tOVmtYpEhUN1LVpZ-YaMpOUnYXbftuFxdyg3W8UOHWt01X9ld59rN3WeYjY7H5lIAVjGOLBHexIjjvi5knAymEAcnbvWpDDXELVl88OjEDhXoXyikJX5mNHPy6YZdKRk/s1600/IMG_5276.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhkc7tCmdOkPX-tOVmtYpEhUN1LVpZ-YaMpOUnYXbftuFxdyg3W8UOHWt01X9ld59rN3WeYjY7H5lIAVjGOLBHexIjjvi5knAymEAcnbvWpDDXELVl88OjEDhXoXyikJX5mNHPy6YZdKRk/s320/IMG_5276.JPG" width="320" /></a></div>
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So happy December to you all dear friends and readers.</div>
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Enjoy the sharp and the smooth of all that your lives bring you </div>
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xxx</div>
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-75489085015938951442015-09-18T17:22:00.000+01:002015-09-18T17:22:56.550+01:00Links links and thanks. Happy 20th Birthday Jeans For Genes!<div dir="ltr" style="text-align: left;" trbidi="on">
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I've been writing elsewhere, hence being so quiet on here. </div>
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Life is busy and today especially so</div>
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That's because it is the 20th anniversary of <a href="http://www.jeansforgenesday.org/" target="_blank">Jeans For Genes Day</a> and I have been very active on twitter, Facebook and at school assemblies, raising awareness of the charity and promoting our <a href="http://www.treehouseatnumbernine.org/" target="_blank">Treehouse At Number Nine</a> story App that raises awareness and funds for them.</div>
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So forgive the linking post to some of today's action and I'll be back soon with more originals.</div>
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<a href="http://www.goodhousekeeping.co.uk/health/health-advice/10-amazing-facts-about-children-with-genetic-disorders" target="_blank">Good Housekeeping Jeans4Genes Day</a> (numbers 11-14 were mine, I loved reading 1-10 though from the other wonderful blogger)</div>
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<a href="http://www.mumfidential.com/it-takes-a-special-mum-to-mother-a-special-needs-child/" target="_blank">Mumfidential Jeans4Genes Day </a></div>
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oh and this lovely post too <a href="http://www.rocknrollerbaby.co.uk/jeansfor-jeansday/" target="_blank">Rocknrollerbaby, J4G and The Treehouse at Number Nine</a></div>
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Have a great day, I most certainly have x</div>
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com1tag:blogger.com,1999:blog-8746473977707735784.post-11244937354908902202015-04-19T21:19:00.002+01:002015-04-19T22:02:31.514+01:00A blanket of words<div dir="ltr" style="text-align: left;" trbidi="on">
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Currently most evenings and for a couple of hours on my days off each week, I find myself with a blank document or notepad in front of me, trying to breathe life into a new story for my Genies and The Treehouse At Number 9. In addition to this I have been feeling rather blue over the last month, which, when it really takes hold, removes the words and writing and leaves me blank.<br />
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These two statements show that I am not entirely achieving what I would like to, and words are not currently my solace as they have so often been.<br />
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So instead I have been reading and reading - books, magazines, blogs, articles, scripts, trying to warm up again from the inside out.<br />
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I have been reminded of a meeting I had a couple of months ago with a father who via his sweet young baby has joined the Ch18 family. In the course of our chat I walked myself back to methods and choices I made when our news was new and things were hospital-tastic; about how I talked and expressed our situation.<br />
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We discussed how I explained things at the start and communicated with different people - the family, the outer circle, friends, within our marriage, to doctors and nurses and people who cared and did so sat in waiting rooms, clinic chairs and round our kitchen table.<br />
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What strikes me is both the power and frustration of language, how it can fail you when you are learning new words and coping with the feelings behind them, but how it strengthens you as you master your new script. Mainly I've been noticing how we all do it in our own way.<br />
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Within the swanky day job, I am now at the happy point of reading series outlines and scripts for a gorgeous series we are making about a family entering the world of "special". The drama will come as much from the family's (in)ability to communicate as it will the diagnosis, and with every sentence I read by the amazing writer, I can't help but compare those characters to us...to me.<br />
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Rather than denial and rejection of labels, I have often described myself as having had a tourettes-like urge in those early years to tell anyone looking at my gorgeous baby about his special genes, his rare disorder, the strange chromosomes...."do you know anything about genetics?"<br />
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With every conversation I had like this, I know now that I was controlling my own words, learning how to talk about him, how to describe us, how to own this shitty confusing horrible time with my own language and not the well meaning or unclear words of those around us. <br />
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I spent my time taking our new label and drawing my own words and pictures on it, slowly obscuring the letters and numbers that other people had put there.<br />
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I still have to control my words when around friends, who look at my amazing boy and wonder what about us is atypical. One such conversation has occurred a couple of times with a neighbourhood friend, dog owner and father of a football mad son who is friends with ours. He has asked what it is that makes me concerned about my boy, because he struggles to see anything at all. It's a familiar refrain, which of course is better than the head-tilting "poor you with your disabled child" option which is thankfully not the case... but still one that I bristle at.<br />
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The last time we talked like this, while looking at our boys play football in the sun that day, I told my friend that he's asked this before and questioned if he was aware of that. I told him I remember very clearly feeling hurt and defensive as I answered him before, because at the time life was very tough and I linked his question to my latest blogpost which was one of the early vulnerable ones. <br />
At the time I think I even said don't read it if you don't understand what I'm moaning about.<br />
Although maybe I just said that in my head...<br />
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Nowadays while things are generally calm and clear, I can explain undramatically to well-meaning friends that I parent as I need but that we're not all that meets the eye. Also that a lot of my boy's success is down to me being able to power on in those early years and not collapse under the medical confusion and lack of information of my very ill baby. <br />
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People now don't know what appointments, challenges or extra curricular stuff goes into mothering, because I don't choose to show them. And that is a subtle difference from those early days when I couldn't let anyone see how hard I was finding it. Yet even then, I found I could always blog and write that pain with ease. <br />
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I won't ever forget the early tough stuff, but it doesn't stop me seeing the amazing boy in front of me today. I parent both my boys with my retractable metal filing cabinet residing in my brain, there to be rifled through and sometimes popping out at a file all by itself for me to notice. <br />
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Right now the files open are dentist, optician and, following a very thorough neuromuscular exam, the one that leads into the school building that is getting more input every day.<br />
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As I've said before, knowing my boy doesn't stand out as different 99% of the time, but also knows to be proud of any differences he carry, is about as good as I've ever hoped it can be.<br />
I have and will continue blogging, writing, forming, thinking, sharing because that way sanity lies for me, and because of this journey into language, I am able most of the time to give a non-defensive glimpse into the parenting that lies behind our appearance of typicality.<br />
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Returning to these new members of our Ch18 family, a family they didn't ask to join, I want them to know how amazingly they are coping, able to see things clearly as parents but also hoping and trying simultaneously to live life day to day. <br />
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When I first speak to people new to diagnoses, I realise that my questions hedge around what they know, how they speak about it, what family around them knows, how they explain to outsiders, how they talk to doctors. Language questions every one, because, of course, words are where I found sanctuary, and somewhere I think I always will. If not on this blog, or in my stories, then in the conversations I have with strangers and friends every hour of every day.<br />
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In our family, thanks to my funny clever husband who has come up with most of the funny titles of the stories I have written over the years, we have rhymes to ease the nagging that comes at mealtimes from the subtle issues with low muscle tone, oral weakness and neurological mal-coordination....so every meal, on and on, day by day, you can hear us all repeat...<br />
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Sit wholly over the bowly.<br />
Sit straight over the plate. <br />
Sit squarely on the chairly<br />
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Words<br />
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And then there are the mantras, there to lighten the dark patches...<br />
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I can do it. <br />
I am brave and I can do it. <br />
I am kind and clever. <br />
We are very lucky.<br />
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Words and language sewn into our daily routines, consciously there to help make things better.<br />
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This is a blog post that has been paused for weeks on end, but finally I know why I kept it. Despite the colour blue tinging my present, and the frustration around a lack of balance and head space for all the things I want to do, words are part of my fabric and always will be. <br />
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From the words that go around my head too dangerous to be spoken; the chats with strangers that I pass by each day, the stories these strangers come to tell me; the poems and stories I write; the school sessions that help the children to trust their brains so jam packed with brilliant words and thoughts; the scripts I read and the encouragement I give. <br />
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I am steeped in words and instincts and they never fail me, even when they spend more time within me than out.<br />
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It's nice to be out tonight. See you here again soon<br />
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com2tag:blogger.com,1999:blog-8746473977707735784.post-8162969888180507552015-03-22T12:11:00.000+00:002015-03-22T12:11:19.029+00:00Repost for Mother's Day <div dir="ltr" style="text-align: left;" trbidi="on">
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Late to the party, but this is a blogpost that I proudly did for Jeans 4 Genes on Mother's Day last week.<br />
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<a href="http://jeansforgenesukblog.org/2015/03/15/guest-blog-a-special-mothers-day-message-from-mum-and-jeans-for-genes-supporter-sara-jackson/" target="_blank">Read it here</a><br />
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At the time this was posted last Sunday I was being Sara Johnson TV exec, listening to clever TV types talk about the industry with the backdrop of glorious Jerusalem.<br />
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Back now, enjoying my weekend and a return to my schizophrenic Johnson/Jackson work/life separation, I felt like reposting the blog.<br />
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As regular readers will know, this charity is very close to my heart, supporting us a family but also helping to inspire us to bring our Genies gang to life in our App The Treehouse at Number Nine.<br />
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if you still haven't downloaded the app (for FREE, for Ipad only, from the App Store) you can find links here at <a href="http://www.treehouseatnumbernine.org/" target="_blank">www.treehouseatnumbernine.org</a><br />
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Happy Spring from Lugs, the whole of the Genies gang, and me xx<br />
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-8708225643677174842015-01-25T18:07:00.001+00:002015-01-25T19:55:35.343+00:00If you Build It; The Treehouse At Number 9<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
Someone clever told me that I should use more pictures if I write a blog post about our musical story App The Treehouse at Number 9, so that anyone who stumbles here can catch up and join in. <br />
<br />
So this week more pictures and more good news.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIoJv8dzi5-j2PnN5m88iJT-KwkDXCmlzNfqYcnIXH-YAejgznk2wECyEPQph-nHOzGl30zrJyIvvVdbjr8rxJWexe1pJNvoMueUoEEm1y4NrWRsVgT_1jIgLLN61S6-rHj2ejJoQ5k9Y/s1600/IMG_0069.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img alt="" border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIoJv8dzi5-j2PnN5m88iJT-KwkDXCmlzNfqYcnIXH-YAejgznk2wECyEPQph-nHOzGl30zrJyIvvVdbjr8rxJWexe1pJNvoMueUoEEm1y4NrWRsVgT_1jIgLLN61S6-rHj2ejJoQ5k9Y/s1600/IMG_0069.JPG" height="226" title="" width="320" /></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUr0d6lHsNbTMkMdf0F_Pht1D8eZgIUV5tAqI3S4Z5PxPrHr3j5CJ_AIqFQz14bo5beym_AAuT9RY34nbudGOwldN5MNaOFmFKSFxQYNk1PP2S2xGBeNtxYJuoFDpOFFQ8gjnOj_Kbs00/s1600/IMG_0068.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUr0d6lHsNbTMkMdf0F_Pht1D8eZgIUV5tAqI3S4Z5PxPrHr3j5CJ_AIqFQz14bo5beym_AAuT9RY34nbudGOwldN5MNaOFmFKSFxQYNk1PP2S2xGBeNtxYJuoFDpOFFQ8gjnOj_Kbs00/s1600/IMG_0068.JPG" height="226" width="320" /></a></div>
We are still happy and shocked at the 15,000 lovely people who have done as Cee-Cee here requested, and downloaded our App. <br />
<br />
Across the week we have had bloggers and tweeters, mums, dads and carers, strangers and friends all helping the momentum to build.<br />
<br />
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Genuinely every download and message lets us know that there is an audience for these children and their stories. Which is more than we dared to hope for.<br />
<br />
<br />
<br />
<br />
On Thursday I was at an evening talk about TV tax breaks, when I received some amazing news about our latest download figure.<br />
<br />
Having realised quite quickly that this talk was not quite what I had expected, the call I got from Karen and the subsequent catch up emails put paid to any concentration remaining at all.<br />
<br />
So while clever people talked about budgets and percentages, all I could think of was our number...<br />
<br />
<br />
<b>Does that say 30??</b><br />
<b><br /></b>
<b style="font-size: x-large;">Did you say 30?!</b><br />
<br />
<span style="font-size: x-large;"><b>Does that mean we have 30,000 downloads!!!!</b></span><br />
<br />
<br />
And the answer was <b><span style="font-size: x-large;"><i><span style="color: #e06666;">Yes</span></i><span style="color: #ea9999;">.</span></span></b><br />
<br />
We continue to be very moved by every download and message, which is driving us to think about what we can do next. With a quiet-ish launch only just getting into its stride, it is clear that there are families out there who want to swipe, listen and read about our happy, positive kids and their adventures.<br />
<br />
As a mother of a special boy I know the pride that he has in just the name of our gang, our Genies, because of the vocabulary I gave him that most children would never need. He has a script that is custom made, ready to answer back with pride should the need arise:<br />
<br />
"I have two rare genetic disorders. That means I have a little bit more on 22 and a little bit missing on 18. <br />
My genes mean that my body and mind sometimes work differently. But I can do everything that you can."<br />
<br />
<br />
And so can our Genies<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxkV4WLSZdKY_H8HgN6vObnirHoXZwm-i5ZeXfXkIAz7feNSqsQH4iAGfV_cPJbJeC6r6t3Le0j4jcCL4ODxGHEW_GFIeoYFi-2GsMwlR0LEhHr5qPu43Hm0xlExxkV4AV1QJca3BYowg/s1600/IMG_3786.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhxkV4WLSZdKY_H8HgN6vObnirHoXZwm-i5ZeXfXkIAz7feNSqsQH4iAGfV_cPJbJeC6r6t3Le0j4jcCL4ODxGHEW_GFIeoYFi-2GsMwlR0LEhHr5qPu43Hm0xlExxkV4AV1QJca3BYowg/s1600/IMG_3786.JPG" height="320" width="320" /></a></div>
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Have you downloaded the App on your iPad so you can meet them yet? If not please do so <a href="https://itunes.apple.com/gb/app/treehouse-at-number-nine/id941368980?mt=8" target="_blank">here</a><br />
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And keep sharing with your friends and ask them to spread the word, also review it if you like it, and please feel free to tell us what you would like us to do next.<br />
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Remember we don't make money from this App which is why every new person who gets in touch is helping us in loftier ways. Your support helps to raise awareness and spread the approach that we have taken, that difference is a good thing and it's time to bring it to the mainstream in children's fiction.<br />
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So come and join the 30 club, thanks and love from us and have a great week!<br />
<br />
xxx<br />
<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com2tag:blogger.com,1999:blog-8746473977707735784.post-34755164904119286772015-01-18T18:17:00.000+00:002015-01-18T18:20:46.173+00:00Treehouse Dreams and Links www.treehouseatnumbernine.org<div dir="ltr" style="text-align: left;" trbidi="on">
I wonder if we know the moments where everything changes? If at the time we can feel a ripple in the tapestry that says we are veering from the path we were on and branching out to something new.<br />
<br />
If I look back at my last decade (which regular readers will have seen me doing a lot) I have had some awareness at times that things were changing: <br />
Becoming a mum of one while still in a high level TV job. <br />
Becoming a mum of two while in between jobs. <br />
Being a mum of two with a complicated and poorly new baby and knowing that something irrevocable had gone for ever. <br />
<br />
But then life slowly and surely reformed. The career was kickstarted, the hospital visits began to slow down and we regained a real semblance of being a typical looking family. Able to pay the bills, balance the work and home, see both our boys growing and developing and managing, each in their own way.<br />
<br />
And how lovely that has been, mostly the same but with new bits thrown in. A life like everyone else's.<br />
<br />
Alongside work and home, I have quite publicly been a fundraiser for the charities that have helped me along the way and that is nothing new.<br />
Something else that I have done quietly however, is getting louder and draws a line from that struggling mum to who I am now. A new Sara into the mix - writer of children's stories and books.<br />
<br />
In the last month friends and family have been heeding the calls from me and my amazing friend Karen Shooter to like our new Facebook page <a href="https://www.facebook.com/Treehouseatnumbernine" target="_blank">Treehouse on Facebook</a> and to follow us on Twitter <a href="https://twitter.com/TreehouseGenies" target="_blank">Treehouse on Twitter</a>.<br />
<br />
All this has been done by our wonderful supporters, often without knowing why, so what we now want to do is explain. Firstly though we need another favour.<br />
<br />
Please rush to the App store and download (for FREE) our musical ebook story app <a href="https://itunes.apple.com/gb/app/treehouse-at-number-nine/id941368980?mt=8" target="_blank">Treehouse at the App Store</a><br />
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Having done that we would love you to rate and review it glowingly so that we can continue to spread the word.<br />
<br />
Because this App is a bit of a dream, one of the things that Karen and I have been quietly doing for the last 8 years. As we explain here on the page put up by the charity who we support <a href="http://www.geneticdisordersuk.org/parentsofaffectedchildren/handyresources/treehouseatnumber9" target="_blank">Treehouse on GDUK</a><br />
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From a story that sat alongside some others we had, our special gang of kids The Genies were lucky to be put through the prism of the new company <a href="http://contact.caa.st/" target="_blank">CAAST</a>. They were introduced by my lovely husband because they were looking for a story to test some amazing new tech they had.<br />
<br />
I can't really remember sitting down and writing these stories if I'm honest. I know that I started to rhyme as I walked Louis in his buggy, frustrated by the lack of proper role models on the page for the gorgeous and different children that I was meeting because of him. And that I was inspired by the films I showed in the assemblies I did for Jeans 4 Genes Day. <br />
I remember meeting with GDUK and asked if I could help them harness the power of stories to help the families and affected children and supporters that they had.<br />
<br />
Then asking for a favour from Karen led to our friendship becoming something professional too, as we slowly became creative partners - her making all my scribblings look beautiful, fun and impeccably designed.<br />
<br />
Little by little, piece by piece, we quietly carried on, until last week when we had a press release go out from our friend at <a href="http://neatpr.com/" target="_blank">Neat PR</a> to launch the app officially. We decided to look at the download figures and had a very big, and very lovely shock.<br />
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That with just a bit of Facebook and Twitter, and a soft launch upload to the App Store, we had somehow enticed over 15000 people to download our story.<br />
<br />
15000!<br />
<br />
Even before our PR plan began.<br />
<br />
Fuelled by happy shock, what we hope is that maybe other parents ARE looking for something different too. Something fun and bright with gorgeous music, sweet narration and a story that makes heroes out of everyone in it. <br />
We think they might be out there, just like the mum who got in touch on twitter on Friday, with a daughter who has a similar condition to one of the Genies. She said her daughter loved the stories and asked when could they read more?<br />
<br />
Wow, and good question. The answer to which will come from us daring to look at the future.<br />
<br />
So this blog is linky and long for a reason, because it's time for us to shout out loud and clearly ask for your help.<br />
<br />
Please will you:<br />
<br />
<ul style="text-align: left;">
<li>Take your iPad and DOWNLOAD us now here <a href="https://itunes.apple.com/gb/app/treehouse-at-number-nine/id941368980?mt=8" target="_blank">Treehouse at the App Store</a></li>
<li>Then go back to the App Store and RATE and REVIEW us (kindly we hope)</li>
<li>Then SHARE SHARE SHARE with anyone asking them to do the same</li>
<li>Please find the time to BOOKMARK our <a href="http://www.treehouseatnumbernine.org/" target="_blank">Website</a> because news will appear there when we have it </li>
<li>And if you have one, please consider opening your BLACK BOOK to us, especially if it contains real contacts to a publisher, or a TV producer, or a teacher at a school that might want a visit, or to someone high profile who also knows how difference feels.</li>
</ul>
<br />
Although we deliberately put this up for FREE, a lot of people donated time and expertise to make it look so professional. We would love to think that we might continue doing what we have started here, slowly but surely building something real, for now alongside the rest of our lives.<br />
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We welcome you all to be a part of these dreams and we can't wait to see you there<br />
Just imagine what we could all achieve together.<br />
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<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com3tag:blogger.com,1999:blog-8746473977707735784.post-35038380857983241242014-11-06T12:29:00.001+00:002014-11-06T12:29:31.772+00:00What it looks like when the system is broken<div dir="ltr" style="text-align: left;" trbidi="on">
I write this article as a woman who has said a sad goodbye to her good friends and waved them off to their new life outside London.<br />
I write this article as the mother of a little boy who has lost his best friend to a new school and his new life.<br />
I write this article as a mother with a special boy who hasn't yet applied for a statement, depressed and disheartened about how broken the system seems. <br />
This system that has caused my friends to have to sell their house in order to give their special boy a future, because nobody here in the LEA wanted to help him to have one.<br />
<br />
What is a parent to do when a child who has spent years trying and struggling is refused an assessment?<br />
What is a school to do when the LEA receive an authoritative and impassioned argument and request for help, yet decide not to consider the support these wonderful teachers need for this boy?<br />
What is a parent supposed to do when the extra lessons, the hard fought for diagnosis, the therapies and battles over homework, the support system of his peers, and their parents, isn't enough to help him to fulfill his obvious potential?<br />
What is a school to do when a teacher, one teacher in a class of 30 kids of mixed abilities and numerous languages, disparate needs and various challenges, cannot devote enough time to this sweet, sensitive boy whose confidence takes a battering day after day?<br />
What is a parent to do when the appeal fails again and the future suddenly, depressingly, has to be taken into their own hands?<br />
<br />
I'll tell you what they do.<br />
<br />
The school resign themselves to a broken system, but do so quietly in the safety of their classroom, hoping the next one will be different.<br />
And the parents battle to write Plan B and upend their lives in doing so.<br />
<br />
I suppose the authorities would say that these are the lucky ones, who can sell a house and find a new one, who can source and fund an amazing bespoke school who exist to make up the lost years for children like this. These lucky parents who have jobs that might bend and lives that can be picked up, well they don't need the system, so it's probably all for the best.<br />
<br />
What they don't realise is that just because you <i>can </i>find a way to reorder your whole life, doesn't mean you <i>should</i>.<br />
<br />
Anybody who met this sweet boy could see that all he needed was support, someone to help him focus and achieve his potential.<br />
<br />
That support was there from the teachers and school, but the structure and system that is there to bolster these professionals let them down too. Everyone who had genuine power for change shirked and shimmied and from where I'm standing, didn't give a damn.<br />
<br />
So my friends, these smart educated parents, who attempted to work in the system as it stood, made one mistake, which was to assume that any of it worked properly at all. <br />
<br />
They decided not to cheat or shout or deceive, but to hope and trust instead. Trust that the LEA would listen to the teachers, or psychiatrist, or ed psych or any of the other professionals put in place, and be lead by their conclusions.<br />
<br />
The result of that trust was that after a string of refusals, delays and the loss of any hope that things might change, my friends had no choice but to cancel Plan A.<br />
<br />
To move away and find a new way, two new schools, four new futures far from where they thought they would build their lives.<br />
<br />
Shame on you Barnet LEA.<br />
Shame on this new system that is as broken as the last. <br />
Shame on you all for quietly removing yourselves from the responsibility of the children in your care and assuming no one would notice.<br />
<br />
We do, and so I repeat<br />
Shame On You.<br />
<br />
<br />
<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com1tag:blogger.com,1999:blog-8746473977707735784.post-38129801366422123262014-11-04T00:49:00.003+00:002014-11-04T00:49:47.020+00:00To do or not to do lists<div dir="ltr" style="text-align: left;" trbidi="on">
this is a first<br />
<br />
getting up from a busy head that won't let me sleep<br />
eschewing the post it note and pen that scribbles the items on the list that usually helps me to clear enough space to sleep<br />
and coming here, to the spare room, opening my laptop, and writing a blog I keep forgetting to come back to sufficiently for any kind dwindling readers to continue to pop by<br />
<br />
my work days are full of notebooks and slate lists and highlighter pens and diaries and nearly enough hours in the day if I can just string enough minutes together to make up those hours<br />
<br />
my home days are full of the stuff of menial life like eating, shopping, organising the family, the diaries, the dates and distraction techniques for when daddy next travels, and the childcare extras for those times due to not having managed to clone myself yet. <br />
<br />
around this, the gaps forced open for the things that make me smile, like exercise and helping at school and blitzing through the replies to the emails marked unread, the family history just beginning and oh and the lovely bits of writing and charity work that are beginning to have a life of their own.<br />
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then there is my constant need to clear the clutter of drawers and cupboards and toys and clothes, in order to streamline our lives. that urge doesn't seem to be going any time soon.<br />
<br />
and the next series of Orange Is The New Black is waiting for us, our current joint happy sofa viewing, squashed into the weeks that we are both in the country and awake<br />
<br />
lists and more lists to achieve and ignore<br />
<br />
and a tired blog post from somebody who really should be asleep<br />
<br />
<br />
<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-20350961758746944292014-09-14T13:03:00.000+01:002014-09-14T13:03:52.654+01:00Trans-season stock take<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
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.<br />
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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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
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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.<br />
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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.<br />
<br />
I felt lighter once I had finished as if I had cleared out my head as well as my cupboard.<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
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...<br />
<br />
EXACTLY WHAT I NEED TO DO RIGHT NOW!<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
I can't wait for my next free hour. <br />
Can you?<br />
<div>
<br /></div>
<br />
<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-42486621974750467412014-06-22T23:19:00.001+01:002014-06-22T23:19:26.640+01:00What's in a name<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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:<br />
<br />
TV Exec, BAFTA membership card and most of the interviews or press = Johnson.<br />
School, medical, mum and latterly blogger, children's story writer and home = Jackson.<br />
<br />
As I get older and my role as media representative for <a href="http://www.chromosome18eur.org/" target="_blank">Ch 18 Europe</a> 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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
<a href="http://wearedaytrippers.wordpress.com/2014/06/09/5-minutes-with-sara-johnson/" target="_blank">Daytrippers Five Minutes with...me</a></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-86080367971483934282014-06-04T23:09:00.003+01:002014-06-04T23:09:51.016+01:00My Seven Year Itch<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
<br />
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.<br />
18p deletion.<br />
<br />
It is particularly poignant that this week is the first ever Rare Chromosome Disorder Awareness Week, highlighted by the amazing charity <a href="http://www.rarechromo.org/" target="_blank">Unique</a>. 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?<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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....<br />
<br />
To say yes to every medical study, no matter how upsetting the things that get thrown up have been.<br />
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.<br />
To see his phobia of needles suddenly require a play therapist to help.<br />
To hear words like social motivation and issues and flags used in the same sentence and not know who to talk to about it.<br />
To search for innovative ways to replicate physiotherapy for the low muscle tone issues that aren't really going away.<br />
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.<br />
<br />
I am brave and I can do it<br />
<br />
We are brave and we are doing it<br />
<br />
7 years on and we're still doing it.<br />
<br />
Grateful, tired, happy and hopeful are we. <br />
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com2tag:blogger.com,1999:blog-8746473977707735784.post-61458874853806925902014-04-25T14:34:00.002+01:002014-04-25T14:34:26.155+01:00(Don't) Ask A Busy Woman<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
<br />
The one about taking on the huge task of organising a big fundraising dinner.<br />
The one about doing so with just one other busy working mum of a special boy like me<br />
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<br />
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.<br />
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.<br />
The one about being so enormously proud of Chromosome 18's new ambassador Eve Rushmer (more about her another time for sure!)<br />
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<br />
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<br />
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.<br />
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.<br />
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<br />
<br />
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.<br />
<br />
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.<br />
<br />
Thanks for letting me catch you up.<br />
Whimsy and humour and proper writing to follow now that the backlog has been outed<br />
<br />
Happy Friday all<br />
x</div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-74158939916079381822014-01-26T22:03:00.005+00:002014-02-03T22:54:17.315+00:00Blown Away by Empathy<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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".<br />
<br />
When I asked him to tell me what he meant he said, and I paraphrase:<br />
<br />
"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."<br />
<br />
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.<br />
<br />
I reached out and squeezed his hand and all I could say was "you are an amazing boy"<br />
<br />
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.<br />
<br />
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. <br />
<br />
I told him it was amazing as a 9 year old, as a boy and most especially as a 9 year old boy. <br />
<br />
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.<br />
<br />
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.<br />
<br />
I am a very lucky Mummy. </div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-435242729276233142013-12-17T14:30:00.004+00:002013-12-17T14:30:45.300+00:00Coming out to say hello<div dir="ltr" style="text-align: left;" trbidi="on">
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. <div>
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.</div>
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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.</div>
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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.</div>
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<tr><td width="100%"><span class="header1" style="color: #000099; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 20px; font-weight: bold; text-transform: uppercase;"><b>SON'S DIAGNOSIS CHANGED MY DNA FOR EVER</b></span></td></tr>
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<tr><td><img height="199" src="http://www.jewishtelegraph.com/images/SaraJackson.jpg" width="300" /><span class="caption1" style="color: black; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 10px;"><b>LOVING FAMILY: Sara and husband Daniel with sons Louis, left, and Jacob<br /></b><b></b><br />
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<span class="text1" style="color: black; font-family: Verdana, Arial, Helvetica, sans-serif; font-size: 12px;"><b><i>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'</i>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.</b><b></b><br />
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.<br />
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.<br />
Our son Louis has two very rare genetic disorders, chromosomal anomalies, the one I know most about being 18p deletion.<br />
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.<br />
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.<br />
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.<br />
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.<br />
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.<br />
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.<br />
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."<br />
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.<br />
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.<br />
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.<br />
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.<br />
These mums were managing, coping with all that a parent to a special child is expected to be able to do.<br />
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.<br />
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.<br />
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.<br />
Most importantly I came home armed with information about what doctors I needed and how to get the best from the system.<br />
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.<br />
So at 2012's conference in Milan, there I was on the committee helping to run things, the excitable English one on the microphone.<br />
There without my family, but at the heart of this amazing weekend of belonging and information.<br />
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.<br />
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.<br />
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.<br />
I am proud to join the tiny group of families around the world who tirelessly fundraise to make our conferences possible.<br />
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.<br />
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.<br />
This is the magic of knowledge and connections and this is why I do what I do. So that is my pattern.<br />
Work, parent, blog (<a href="http://sarajinbetween.blogspot.com/" style="text-decoration: none;" target="_blank">sarajinbetween.blogspot.com</a>), tweet (<a href="https://twitter.com/MrsSarajj" style="text-decoration: none;" target="_blank">@MrsSarajj</a>), fundraise (<a href="http://www.chromosome18eur.org/" style="text-decoration: none;" target="_blank">www.chromosome18eur.org</a>), help, hope and reach out to find others who must be out there.<br />
Contact Sara via <a href="mailto:mcohen@jewishtelegraph.com" style="text-decoration: none;">mcohen@jewishtelegraph.com</a><br />
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-78030016901132078472013-11-10T21:47:00.000+00:002013-11-11T21:59:32.398+00:00Decades and Dad<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
<br />
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.<br />
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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.<br />
<br />
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. <br />
<br />
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.<br />
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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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
People have said then as they do now, that he would be proud of me, and I agree. <br />
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. <br />
<br />
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.<br />
<br />
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.<br />
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-83090299312058401902013-10-27T17:54:00.001+00:002013-10-27T17:54:52.623+00:00Full Time, Part Time, Total Eclipse - A Decade of Working Mum Life<div dir="ltr" style="text-align: left;" trbidi="on">
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<!--StartFragment-->
<br />
<div class="MsoNormal">
<span lang="EN-US">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<sup>th</sup>
decade, I realize that in the last decade of my career I have been full time, part time
and unemployed in various measures. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">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 </span>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 <a href="http://www.womenlikeus.org.uk/" target="_blank">Women Like Us</a> and took comfort by searching weekly for jobs both in my chosen field,
and outside in Plan B Land, should all else fail.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">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. </span></div>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">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.<o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">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: </span></div>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US">To attend
clinic appointments guilt-free</span></div>
<div class="MsoNormal">
<span lang="EN-US">To speak to teachers who know who I am because of the times I am able to go in and help</span></div>
<div class="MsoNormal">
<span lang="EN-US">To continue my work as a
parent advocate and writer on behalf of the charities that help me to retain my
sanity</span></div>
<div class="MsoNormal">
<span lang="EN-US">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">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. <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US">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. </span></div>
<div class="MsoNormal">
<span lang="EN-US"><br /></span></div>
<div class="MsoNormal">
<span lang="EN-US">You see women like you and me need women like us to
help us to keep on keeping on. </span>Either full time, part time or somewhere in between. </div>
<!--EndFragment--></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-29841588473548617012013-10-21T22:30:00.002+01:002013-10-21T22:30:29.981+01:00Weekends With Friends<div dir="ltr" style="text-align: left;" trbidi="on">
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
At 11 glorious strong funny wonderful women - both pictured, not and including myself - who I am proud and happy to call my girls.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpAx7Zta0U42Inytd6LuQGaMvaZGJSdoVHgVoszrU3CPLCpjpqLw_IQ95LZtKqjEkdXMJ5fk5UaYbk9APGGCCyb3oOlhPuGVzMa0gmBfh9mJgFXfnMUShnR4PQopu06IecEhisGqAxc4U/s1600/IMG_1640.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="240" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpAx7Zta0U42Inytd6LuQGaMvaZGJSdoVHgVoszrU3CPLCpjpqLw_IQ95LZtKqjEkdXMJ5fk5UaYbk9APGGCCyb3oOlhPuGVzMa0gmBfh9mJgFXfnMUShnR4PQopu06IecEhisGqAxc4U/s320/IMG_1640.JPG" width="320" /></a></div>
<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-57524900965169664102013-08-30T20:55:00.004+01:002013-08-30T20:55:43.126+01:00A post from my boys<div dir="ltr" style="text-align: left;" trbidi="on">
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.....<br />
<br />
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.<br />
<br />
My youngest is here with me, chatting away watching me buy the gift for the above-mentioned wedding.<br />
<br />
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. <br />
<br />
He asked if he could do a tiny blog too.<br />
<br />
So here it is, typed by me, his devoted secretary:<br />
<br />
*we just had a small row about me typing it, and agreeing that he could type his name*<br />
<br />
I want to write about my brother. I get to play rugby with him. That's mainly all I want to say.<br />
Playing football with my brother makes me happy. <br />
<br />
*Mummy just asked if I have a message to say to anyone who comes to read about us here*<br />
<br />
I don't.<br />
I really want to type my name now.<br />
<br />
*Mummy says I have to do a little message and then I can type*<br />
<br />
Wait a minute, my brother just came in. <br />
<br />
*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*<br />
<br />
*With some prompting we say*<br />
<br />
Thank you for reading about us, sort of, it's a bit weird but<br />
<br />
*this next bit is kind of written by me*<br />
<br />
Mummy hopes that we trust her to not say too many embarrassing things.<br />
<br />
*time to sign now - just had to tell them I don't use their full names, so they have plumped for initials*<br />
<br />
LJSJ JHAJ<br />
<br />
*they want the dog's initials too*<br />
<br />
BEJ<br />
<br />
*preview shown, they aren't that excited, which is good*<br />
<br />
Publish and goodnight<br />
<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com1tag:blogger.com,1999:blog-8746473977707735784.post-29712634314546537512013-08-21T23:23:00.000+01:002013-08-30T21:11:30.558+01:00#Thisismychild <div dir="ltr" style="text-align: left;" trbidi="on">
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Half a post for a brain not quite working but I love this Mumsnet campaign <a href="http://www.mumsnet.com/this-is-my-child" target="_blank">www.mumsnet.com/this-is-my-child</a> and I want to stick my oar in.
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<br />
#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)<br />
<br />
Typical to a casual onlooker but as rare as an alpine flower under a microscope<br />
Unrecognisably lucky and successful from the baby we had diagnosed<br />
To his Daddy joyfully a boy with no need for a label and with all the promise of a typical life ahead<br />
To his big brother an annoyance and yet not entirely like everyone else's sibling<br />
To his extended family a joy and a relief from the worry of the earlier years<br />
<br />
And to his Mummy all that he was, is, could be, might be in all its joy and pain and<br />
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<br />
<br />
This is my boy but this is my voice and I am sorry if it shines a light that you don't want<br />
I will stop talking about you in a heartbeat if it hurts, but I can't stop talking about<br />
how blessed, challenged, heart filled and heart broken I sometimes am as your mummy.<br />
<br />
When a doctor can't see or hear me when I tell them what you need<br />
When you squeeze and kiss the energy back into me<br />
When you experiment with tears and emotions that I feared might not be in there<br />
When you read and speak and run and jump in a way that we were cautioned you might not<br />
You are my youngest boy<br />
<br />
You are ours to protect<br />
<br />
Forgive me if I do that too loudly sometimes<br />
<br />
<br />
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<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-47925903647764623222013-07-12T12:04:00.001+01:002013-07-12T12:04:55.991+01:00A Pocket Full of Firsts<div dir="ltr" style="text-align: left;" trbidi="on">
<br />
1st first - I have just been added to the Mumsnet Bloggers Network<br />
Upside - ooh lovely, more people to read me<br />
Downside - completely paralysingly...aware....of every...word...I.....type<br />
<br />
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<br />
Upside - drank lots of water and had something to talk funnily about in creative meetings that day at work<br />
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<br />
<br />
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.<br />
<br />
To explain:<br />
<br />
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 <a href="http://www.business4better.org.uk/" target="_blank">B4B UK</a> 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)<br />
<br />
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.<br />
<br />
So what an amazing gift it was to get to spend two days on a stand, next door to the wonderful Jeans4Genes <a href="http://www.jeansforgenesday.org/" target="_blank">http://www.jeansforgenesday.org</a> 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. <br />
<br />
I know that we parents of our <a href="http://www.chromosome18eur.org/" target="_blank">Chromosome 18</a> 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. <br />
<br />
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.<br />
<br />
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.<br />
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.<br />
<br />
<br />
The <u>failed dieting first</u> allows me to look at myself honestly and understand the need to be healthy.<br />
The <u>two days at conference first</u> makes me see that every second counts, in my reality and in life itself<br />
And my <u>potential new audience first</u> and sitting down to write this post has provided the connections between them all.<br />
<br />
You make a living by what you get and you make a life by what you give. <br />
<br />
Let's get giving<br />
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Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-90839764472024478322013-06-28T13:35:00.000+01:002013-06-28T13:35:17.576+01:00Crystal....ballsBack 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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Often that process is contradictory, by being both empowering and awful, satisfying and wretched, surprisingly easy and terribly hard.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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 <u>us</u>. 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.<br />
<br />
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.<br />
<br />
"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".<br />
<br />
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.<br />
<br />
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?<br />
<br />
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. <br />
<br />
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.<br />
<br />
Watch this space and thanks for listening<br />
<br />
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com2tag:blogger.com,1999:blog-8746473977707735784.post-82639891767040298202013-06-04T11:51:00.004+01:002013-08-31T09:28:28.963+01:00Working Smiling Resting and Suddenly Crying<div dir="ltr" style="text-align: left;" trbidi="on">
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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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.<br />
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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.<br />
<br />
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.<br />
<br />
The stuff of life itself<br />
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<br /></div>
Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-74080455965858669182013-05-14T13:35:00.002+01:002013-05-14T13:35:16.569+01:00Olivia Colman, Romola Garai and me...thank you BAFTAI am writing this post as a big smiling shout out to my friends Fran and Rachel from Portobello Parties <a href="http://www.portobelloparties.com/" target="_blank">www.portobelloparties.com</a> for the following reasons:<br />
<br />
1. For having immaculate style and choosing to channel that into a fantastic little clothes business that brings Portobello designers to my (your) door.<br />
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.<br />
3. For knowing what will suit me despite my angst-ridden protestations.<br />
<br />
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.<br />
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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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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".<br />
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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".<br />
<br />
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.<br />
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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.<br />
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<br />Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-83406462787677539442013-03-11T22:56:00.003+00:002013-03-11T22:56:37.288+00:00Mother's Day DilemmaI'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. <br />
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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.<br />
<br />
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.<br />
<br />
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. <br />
I was shocked and upset at what I found.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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 <a href="https://www.facebook.com/EndtheWord?filter=2" target="_blank">Spread the Word to End the Word</a>. 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.<br />
<br />
No hoopla, no guns blazing, just disappointment. <br />
<br />
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.<br />
<br />
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. <br />
<br />
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. <br />
<br />
And this at last has finally given me something to smile about.<br />
<br />
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<br />Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com0tag:blogger.com,1999:blog-8746473977707735784.post-52692290834766012472013-03-06T23:53:00.001+00:002013-03-06T23:53:12.180+00:00Getting back on the horseOoh 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.<br />
<br />
...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. <br />
<br />
Anyway, here is a quick overview of life since June last year.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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. <br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
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Hope to see you here as I work it out x<br />
<br />
<br />Sara JJhttp://www.blogger.com/profile/09309499383325102352noreply@blogger.com2