I made myself giggle at bedtime last week.
You know when you suddenly become aware of your own oddities?
Well my favourite one at the moment is that I seem to operate in a clockwise direction. Even when it's the long way round.
Most nights, I come to bed and read a little to turn off the brain from all the lists and "must-do's" and "haven't done's" and "they said's".
So, reading, pillow piled under my head as I lie on my back, the eyelids get heavy and I throw the magazine down (Sunday Times Magazine or Style in snippets all week long, in case you were wondering).
I get all snuggly and ready to sleep and make my way to my preferred sleeping position - on my front, head turned to the right.
To reiterate, I'm lying on my back, but instead of just turning to my left to get there (ie anticlockwise) I seem to turn to my right and do a kind of flip over to reach the same point (ie clockwise).
I think I've been doing it forever, but now I'm aware, it means I go to sleep giggling a bit every night.
and try as I might, I can't just turn to the left.
oddity exposed...
I thank you
I'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.
Thursday, 14 January 2010
Thursday, 7 January 2010
Gender stereotypes in play
When I came in from work tonight I read the boys my new story, Lolly the Lamb, and then they asked to write stories too. So, computer on knee, I typed, they created and I helped them to shape as they wove their sweet little tales.
J's was about a boy called Sammy with 11 siblings (add that to the books he chooses at school called Johnny's new baby and you'll see a pattern)and Louis' was about a dinosaur called Jay who liked to go raar.
Then Daddy comes home and within 2 minutes they get tired of storytelling, and the next time I look up, he's in full on wrestling mode with them. Instead of two little boys, we now have ice man and I think spiderman and they are jumping on each other, tops off, full of mini testosterone.
It inevitably goes too far, so Daddy tries to calm them down which takes some time(meanwhile Lhas a little coughing fit and goes off to the loo in case he's sick).
They're now using the toy food and plates to cook pretend yukky things for each other, and cakes, and having a lovely time navigating between our male and female playing, and I've come in here to quickly post this blog.
J's was about a boy called Sammy with 11 siblings (add that to the books he chooses at school called Johnny's new baby and you'll see a pattern)and Louis' was about a dinosaur called Jay who liked to go raar.
Then Daddy comes home and within 2 minutes they get tired of storytelling, and the next time I look up, he's in full on wrestling mode with them. Instead of two little boys, we now have ice man and I think spiderman and they are jumping on each other, tops off, full of mini testosterone.
It inevitably goes too far, so Daddy tries to calm them down which takes some time(meanwhile Lhas a little coughing fit and goes off to the loo in case he's sick).
They're now using the toy food and plates to cook pretend yukky things for each other, and cakes, and having a lovely time navigating between our male and female playing, and I've come in here to quickly post this blog.
Wednesday, 6 January 2010
snow day January 6th 2010
I know it's inconvenient when it snows.
when you can't get to work
when schools shut early or don't open at all
when deliveries don't come
when the car won't move
but I love it love it love it. even when it's iced over tomorrow and I struggle into the office, I'll be thinking of that special kind of red on my boys cheeks. the satisfaction of putting food out for the birds and the strange lunchbox contraption underneath that put off the big greedy pigeons. the snuggled up under a blanket with my slippers on, working, emailing, hearing the kids play and licencing myself to eat eat eat because we have to store up the fat.
thank you for this day
when you can't get to work
when schools shut early or don't open at all
when deliveries don't come
when the car won't move
but I love it love it love it. even when it's iced over tomorrow and I struggle into the office, I'll be thinking of that special kind of red on my boys cheeks. the satisfaction of putting food out for the birds and the strange lunchbox contraption underneath that put off the big greedy pigeons. the snuggled up under a blanket with my slippers on, working, emailing, hearing the kids play and licencing myself to eat eat eat because we have to store up the fat.
thank you for this day
Exclusions
Imagine if you will. we get a diagnosis for our little man. a rare genetic disorder, very little known about it blah blah blah. we fall into the system, learning our way, only dipping out to pay for consultants when we need to see the same person each time. and all along the way we don't know what is just L, what is 18p deletion and what is specific complaints unrelated to anything. all the eminent people we talk to are clear on that point.
The health insurance companies however are perfectly clear on what they think. they will happily insure us with a family policy, as long as we don't expect the little one to be covered. apparently he's not part of this family policy. his diagnosis means he's not allowed whatever we all are.
now we know how lucky we are to have the NHS in this country and we treasure it and do not abuse it. but it's almost unfathomable in its density of how to get what you need, who to ask, what's available...especially for something so rare and on the whole not life threatening most of the time. I reserve the right to try to ease the system on the NHS and take advantage of our private cover to see the same paediatrician every time, to have someone who knows everything we know and can add their experience to it. not to have to start from scratch every single appointment.
if they exclude my son, then I don't want to be part of what they are selling. I want to stop living in fear and that's exactly what Insurance is. selling fear to people scared of what may happen. but it's not just for me this problem lies.
So beware, because if you become ill you will long for a diagnosis, and medical science means we're so much better at getting those answers and labels. in fact without those diagnoses you often won't get what you need in treatment and support. But when that label comes, you are suddenly moved out of normal society for ever in the world of insurance. If it's on your records, anywhere, written down, diabetes, genetic disorder, cancer, anything that won't just go away, you move sideways. for good.
I don't want a policy that doesn't want my baby. I don't want anything that tells him that he's not allowed what everyone else can have. that's the one thing I want to teach him and am determined to teach to everyone around us.
The health insurance companies however are perfectly clear on what they think. they will happily insure us with a family policy, as long as we don't expect the little one to be covered. apparently he's not part of this family policy. his diagnosis means he's not allowed whatever we all are.
now we know how lucky we are to have the NHS in this country and we treasure it and do not abuse it. but it's almost unfathomable in its density of how to get what you need, who to ask, what's available...especially for something so rare and on the whole not life threatening most of the time. I reserve the right to try to ease the system on the NHS and take advantage of our private cover to see the same paediatrician every time, to have someone who knows everything we know and can add their experience to it. not to have to start from scratch every single appointment.
if they exclude my son, then I don't want to be part of what they are selling. I want to stop living in fear and that's exactly what Insurance is. selling fear to people scared of what may happen. but it's not just for me this problem lies.
So beware, because if you become ill you will long for a diagnosis, and medical science means we're so much better at getting those answers and labels. in fact without those diagnoses you often won't get what you need in treatment and support. But when that label comes, you are suddenly moved out of normal society for ever in the world of insurance. If it's on your records, anywhere, written down, diabetes, genetic disorder, cancer, anything that won't just go away, you move sideways. for good.
I don't want a policy that doesn't want my baby. I don't want anything that tells him that he's not allowed what everyone else can have. that's the one thing I want to teach him and am determined to teach to everyone around us.
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