Somewhere In Between

Break Yourself Better

2012-01-08T04:06:00.000-08:00

I've been having a lovely time writing for a site called The Weekly Wrinkle about all kinds of things that make me laugh. Today I'm really happy to be posting my next bit of nonsense back here, in my happy in between, enjoy...

This is it, I’m going to make a fortune because it’s nearly time to unveil my very own, “Post-Christmas, everyone’s a bit fat”…..Broken Limb Fitness Fad.

Back in August I broke my 5^th metatarsal while stumbling clumsily on holiday (perfectly sober more’s the pity). After an operation to pin an errant little bit of bone and 14 weeks of post op tedium, I have found many unforeseen shallow benefits to this injury; various aspects of incapacitation and recovery that are as good if not better than many of the nonsense “eat yourself thin and happy” things I’ve read over the years.

So here, gratis for you readers, I reveal snippets of my soon to be best-selling book and DVD: Break Yourself Better.

Skin Care

After 3 or 4 weeks of non-weight bearing/hopping/crutching, then 3 weeks of partial weight bearing/crutching, I found hidden skin benefits. Namely that my left foot was transformed all over; soft, smooth and unblemished as a newborn’s. Persistently and without any effort from me. And it still is. Genius.

Bingo Wing Busting #1 - Swinging on Crutches

After around 6 or 7 weeks on crutches I had extremely firm upper arms. As a result I have not yet consigned said crutches to the loft (don’t worry, not stealing from the NHS, mine cost 11 Euros in Spain). Just a few minutes a day swinging around in the bedroom is keeping the bingo wings at bay and is fun now that it’s not a necessity.

Bingo Wing Busting #2 - Bum Shuffle Toning

I found that the shuffling up and downstairs on my bum that I had to endure for numerous weeks had two fabulous benefits. Firstly for my upper arms, much more fun than those machines at the gym. Secondly it also managed to flatten down my bottom and kind of dissipate all the wobbly bits. For my hugely successful book I shall endeavour to find some dodgy science to back all of that up.

Surprise Weight Loss Opportunities #1 - Pre-Pubescent Flashback

Leg withering and muscle atrophy is not really something you’d imagine could have a silver lining, but I’m happy to say it can. You see, on a bad day, I think it is secretly a little bit ok to look in the mirror at the top of your withered thigh and see that it looks just like Victoria Beckham’s. (*DISCLAIMER, do not look at the whole leg, just the bits that have not been thin since you were 10 years old)

Surprise Weight Loss Opportunities #2- Allergic Reaction Result!

Adverse reactions to both anaesthetic and pain killers, plus inactivity and slight depression, can mean unforeseen weight loss. (*DISCLAIMER, continued exciting eating makes the weight loss/gain boundary quite hard to discern. At some point you have to step away from the biscuit cupboard)

Hard-Core Points

I find that any points this many years past child-bearing are hard won. Even my two natural births are long past counting and it’s been difficult to garner anything on the pain scale since then. Men on the other hand continue to do man-games like football through and past their 30s, so fractures,sprains,ligament tears are commonplace. However a bona-fide broken bone, operation and ligament damage, borne with supreme grace and bravery (this is hindsight here remember) just adds to your “I’m harder than you” quota.

So, should you have stumble-trip-clunked over the festive period and find your brittle bones suffering, come and find solace at a bookshop near you.

Monday, lovely Monday

2011-11-21T13:10:00.000-08:00

Today I cracked it, this working three days a week thing.
13 weeks after my foot op, I spent this free day getting the balance right.
Firstly taking my boys to school, seeing the other parents, enjoying the reaction of the kids to the Great Fire of London story session I did last week. Then I went for coffee with my lovely friends at the Deli I always wished I spent more time in.
From there to a quick butcher and grocery shop before 2 hours singing with a group of wonderful old Jazz musicians. Then straight to the gym for that all important rehab, before school pickup, gentle unhurried walk home, homework, playing and music round the kitchen table while I cooked and ate with the kids.
Guilt free, restful, creative, happy being both quick and slow, lazy and efficient, I am delighted to have had this one day feel this good.

Dis-Abling Lack of Empathy

2011-09-06T10:13:00.000-07:00

I broke my foot on holiday back at the start of August.

One month and an operation later I'm still laid up/compromised/trying to live my normal life as a working mum of young kids in the summer holidays. I have crutches and an an aircast and am trying to use them now my stitches are out. I spend most days deciding between backache with my leg up to stop the swelling, or foot ache if it's down to type and work. My perenially and notoriously skinny legs are now so spindly and lopsided (I have used the word withered a little too often) that I couldn't rush the recovery period even if I tried (I have, don't tell my Mum or Sister).

Now as a normal kind of woman, generally healthy, in my late 30s, this is a frustration and what I hope will be a blip of a quarter of a year. What it means as a mummy to a not so typical little 4 and seven-eighths year old boy, is an enormous eye opener.

My little man has two very rare genetic disorders 18p- and 22q+ and for reasons best known to higher powers, is gloriously not severely compromised by them, anymore and at the moment. That isn't to say that life with him is all whoopadidoo easy. He does have a "disability" and there are challenges aplenty, but he is not currently "disabled" and we're thankful that he can see, hear, talk, walk, eat, toilet, run, think and enjoy his life like others his age.

So many of his little Chromosome 18 gang have really tough challenges in many of those areas and through them I've been introduced to a world of varied disabilities. So when a hearty grumbling pierces my "I'm fine, really" attitude, the people who've heard my moans have been the friends with typical families and typical lives and typical troubles. Not my hard-pressed amazing supermommy tribe. But that's for exploration on another post on another site (www.differentizgood.org, here I come I promise).

Why I'm writing this is because as a temporarily not-able person in London, I am incredulous as to how people who have lifelong mobility issues get to join society at all when the simple things are made so difficult.

In most public places, if I need to use the facilities I have to go either down or up numerous stairs.
Any walking I do has my eye fearfully trained on the pavement because of the uneven flagstones and potholes.
Pedestrian crossings are about two thirds as short as they need to (I knew this anyway, as an unofficial older person guardian whenever there's been one next to me crossing).
And in the city of London in 2011 with countless refurbishments having gone on over the years and an Olympics coming up, I am unable to find step-free access to a major tube station allowing me to physically reach my office in Goodge Street in the centre of London. The closest I can get is to either change tube lines twice (with steps) or get off half way and then get two different buses and have to walk. So my amazingly patient bosses have cabbed me into work one day in the last month and been great about me working from home the rest.

Today I am hoping to brave my normal journey there and back like a normal person. But commuters and fellow travellers please beware.

Because if any of you tut as I fearfully stump towards you gesturing for your seat as I get on the tube and try to sit down before it moves off and I fall over......

Or if you tut when at Goodge Street station I take 10 minutes to climb the many stairs from platform to lifts, before hoping you don't stand on my foot as I edge to the packed lifts.....

Or if I over-react a little when you shove me as you do everyday in those lifts or surge forward and squash me as you try to enter and leave......

I will not be nice happy sunny Zen former-tube passenger Sara.

I will be sore, cross and vindictively passionately vocal about our disgusting lack of empathy for anyone less than typical, and how this scourge of our society shames us daily.

You have been warned.

PS on 6th September

That post was written last week.

I have just returned home from said commuting to work and the scores are as follows:

Fellow tube-goers - nearly full marks, but I cheated by travelling not in peaktime.

Bus nobbers, as I shall now call them - Zero, generally awful and selfish behaviour inducing a near panic attack causing me to get off a stop early because I feared falling over or being squashed by people or the bus doors.

Vindictive Sara in the face of these bus-nobbers - Zero. Too scared and spindly to stand up and rant.

And now my poor little calf is yelling "what's happening" very very loudly at me, having had to walk or stand for 35 minutes at the end of a day full of more action than it's had in a month.

Tomorrow's another day. Now where is that local cab number????

Hop ouch grrrr

2011-08-17T03:43:00.000-07:00

Another few weeks go by without a blogpost, again with a brilliant excuse.
I went on holiday with family to Spain, I had a lovely time despite a few blips.
The first being when we arrived at the airport at 4am on Sunday to find that our flight had been cancelled. During the next 15 hours or so until we arrived at the villa in Spain, I only had two freak outs. One as we drove home from the airport about what time to go back and how much to trust the airline. The other 15 hours later when I couldn't find the coach that was taking us to the car we had hired.
Did I say car? Sorry I mean van. Actually that was just funny, driving into Puerto Banus on a shopping trip in our little white van, sandwiched between Bentleys and other posh cars. We played a game with the kids, trying to decide what our delivery should be each trip.
I know you'll be wondering, so I'll tell you. Fishing rods to the port, because it's by the sea, and then deliver the fish on the way back to the villa.
Anyway, holiday was nice and quite relaxing. We had a day trip to Gibraltar which we all decided would be gorgeous if owned by someone other than the British. That way you'd get to eat nice healthy food in the sunshine, although you wouldn't have M&S.
So on Thursday morning I am hurrying round the pool, gathering suncream and water bottles and hats and goggles while the kids are getting ready for a swim. Then
Stumble
Snap and twist
Scream
Yes, simply standing still and turning to fetch something I manage to stumble trip. The scream was me telling the kids to move away, the silence was me saying to D I've really really done something bad.
I spent the next 3 days unable to walk on it assuming a bad sprain and getting sympathy by posting photos on Facebook.
Red crutches on Friday bought for 11 Euros help with independence but when on Saturday my toes turned black, I figured all was not well.
Skipping the (don't) meet and assist at the airport, the kind of fun wheelchair through security, ambilift off at Luton, child pushing me hair-raisingly at incoming passengers on way to car, and the new swear words I invented in response to hubby's "man up" comment, we dropped me at A&E on way home to find I had broken and displaced my 5th metatarsal. I made sure I told D I was manning up as the nurse sent me to the plaster room though!
Long story short, temporary cast led to inadequate consultant at fracture clinic who said no pin or cast needed, just walk and see you in seven weeks. Second opinion on Thursday, a week after I hurt it said let's operate the bone is badly twisted.
After the op that night the surgeon said it would not have healed if we hadn't pinned it and that I would have had terrible arthritis.

So, I'm typing this in bed, day 6 of 14 where it must be raised and rested. I now know the following:
Crutches are fun for about a minute
Morphine is great while it lasts and beyond that my body disagrees violently
Codeine and I will never be friends
I am able to safely lie myself on the bathroom floor before fainting after a build up of codeine
6 year old boys do not like immobile nauseous mummies during the summer holidays
Enforced rest is crappy but having no choice helps me to behave...that and the fear put in me by surgeon about a big pin in a very small bone...

And I don't know the following:
Would camping solo with kids and very nice friends be very stupid post day 14 even if am allowed to walk with boot and crutches by then?
Is faking wellness better than admitting pain with angry 6 year olds?
How much apologising and niceness is reasonable to expect from husband who has been on business trip from days 2 to 6 of incarceration and is now asleep on my sickbed, dealing with jet lag, before leaving for a meeting in a few hours?
Whether I am capable of giving in and just going with this resting lark while the house is in disarray despite the amazing and fortuitous former au pair who has been saving things here.

In pure vanity and fitness terms, I don't know whether my left leg should have already have thinned so much. I was afflicted with chicken legs before, hence this stumble trip and broken leg having been put off for so long in one so clumsy??? but my poorly leg already resembles a sparrow. What bird of thin limbs could possibly follow in the next week??

Ah well, new experiences abound.

Day 6, already slightly better than day 5, day 5 much worse than days 3&4
Overall, stoicism and northern grit just about intact.

Age 39...

2011-07-25T13:34:00.000-07:00

...and I've just decided to embrace the power of makeup.

At some point during my stroppy teenage years I looked at my beautiful mummy who still, to this day, has her routine of putting on makeup as part of her every day, and for some reason decided that that wasn't for me.

I remember thinking that I don't want to get used to wearing makeup every day, so that I don't ever have to hate my face on a day when I don't put it on. Also I was and am a bit anti-routine and lazy and hate feeling like I have to do something every day without fail or else.

So for years I've had some makeup, managed to put it on when going out for the night, or for weddings or parties or whatever. And done that managing not to be too embarrassed at any nice comments that might have ensued. I also have tried very hard over the years not to bristle at the comments I've received when my curly hair has been straight on that day after it's been cut. Which are right up there with the 'oh you look so different, so lovely without your glasses'.

That's really nice and all, along with the straight hair comments, alongside the makeup comments, but actually I have curly hair and glasses and generally can't be arsed with makeup. Which is also ok....isn't it?

And I realise that yes, that is ok, but so is wanting to look nice every day, wanting to go beyond the clean face and moisturiser rule that became my bare minimum. Wanting to allow myself to dress nicely, to feel good and to use the tools that can help me with that. Tools that also include a good night's sleep, plenty of water, remembering to smile and not just frown, and continue to breathe in all the lovely things around me.

As an official bona fide nearly grown up, I now embrace wanting to have nicely highlighted hair and trust my fantastic hairdresser and his advice as to when he will let me realise my ambition to let my grey hair 'run free'.

I look at my mother, my sister in law, my mum, I think of an old friend and her presumably still active lipstick obsession, and think how lovely they look. I must make sure I tell them more often how their effort is appreciated from where I'm sitting. I also think of my own late blooming as one more thing that me and my super sis have in common.

On my recent annual girls weekend, I found myself looking closely at my gorgeous blonde friend's makeup, using it, seeing how nice it looked and grinning at how different I felt. So for my 39th birthday a month ago I asked my mum to buy me the magic Touche Eclat, I bought myself a pressed powder, dug out the bronzer and nice lipstick and liquid eyeliner that has slowly snuck into my top drawer this last year, and started to gently form my little routine.

Nothing or a tiny bit for the glowing good days. A little more help when feeling grey and tired. And the maximum, well my minimum maximum anyway, should there be a camera or a need to feel pretty and instead of standing out as tired and old, allow myself to blend in as having cared enough to try a little.

Yes, that's the difference now.

Now that I'm significantly older, tireder and able to look at the whole Sara in the mirror again, I realise that the makeup I once thought wearing would mean I'd stand out, actually allows me to blend in. But blend in feeling happy, healthy, attractive and comfortable with myself.

So yes, this is a post about shallow things but a realisation that those surface changes are part and parcel of helping me to feel good deep down.

Now, where is that lovely lip gloss?

Camping

2011-07-14T16:18:00.000-07:00

I have an ode to camping, having come back a week ago from my third ever camping trip.
Maybe it was the sun and the rain, maybe it was the same four weather-hardy families second year running saying devil may care.

Maybe it was the newly mentally healthy frame of mind that has been sneaking up on me since the fundraiser...

but I had an amazing time.

I didn't feel overwhelmed by the organisation or the situation or the weather or the eating or the keeping warm
I didn't feel underwhelmed by the outdoors experience that I thought should be so much more

What I felt was calm, happy, in control but not controlling.

Eat when hungry, drink when the kids are in bed, go inside when it rains, come out when the sun shines. Wear wellies, tshirts or raincoats, woolly hats and cardigans and shorts and vest tops. Go swimming, make coffee to warm up, eat a little bit too much meat in our excitement of having food cooked on an ever ready BBQ. Paint facepaint tattoos in the sun, swim in the sea, play football, have sneaky smokes behind the bikesheds.
Drink huge rum and cokes and eat snacks and play games and blow up balloons and laugh and chill and have a ball.
Listen to the rain, overwhelmingly loud, slightly worrying about whether we're all being flooded and rolling down the hill, but put all that aside and love the noise and power of nature.
Be clean and a bit dirty and a perfect balance of everything.
Embrace life
Camping rocks
Even in rainy sunny windy Norfolk
Bring on next year
x

Did It, Loved It

2011-07-06T13:47:00.000-07:00

It's four nights on from my fundraising party and I'm finally in front of the computer able to update you all.

Reading back on my last post, I'm so happy to be able to report that I was so happy on the night, all night, even when I was a little bit stressed and frantic.

The venue was gorgeous, the people there were so helpful and professional, there was enough food, the band were awesome and they made our party feel cool and fun and loud.

So many people came to support us and left having enjoyed themselves. My gorgeous niece bought a gaggle of her friends and they helped to boost the atmosphere with their whooping and gay abandon and bring the average age down considerably.

I felt so much kindness and love for us and our boy and our boys. I looked around the room and realised that there was a representative there from pretty much the whole of my life and certainly a cross section of friends from the last 30 years. Many not knowing anyone but me and whoever they came with, but all smiling, most drinking, some singing and all putting up with the hugs and snatched thanks as all they really got from me.

We have raised to date just over £11,000 and I'm utterly overwhelmed and thankful for that. My target was five and I thought that in these times of need that that was a bit pie in the sky. So how glorious it is that everyone has been so generous and how right it was, though hard, to email everyone who I still have email addresses for years on from when we met.

Many people have texted and emailed since to thank and congratulate me on putting the event on and the word inspirational has popped up a few times.

It's funny that word.
Even though I don't think about it often, and can't recall on demand a list of who I find inspirational, I know there are many who would make it on there. Famous and not, alive and not, old, young, sick, healthy, rich, poor. Inspiration comes in many guises, enduring and ephemeral and I think, all terribly important for our aspirational and happy mindsets.

I got through the whole night not crying at all, not during my speech (about which I can tell you nothing), not during my song (about which I can tell you all you need to know...bit low and Barry White but I got away with it, thankfully Beat It snuck up on me later and was such fun) and not even when Alistair, Bonnie, friends and others thanked me and said they were proud.

But typing here with my hair on end, late at night, shaggy old shorts donned, slightly embarrassing dinner digesting as D is away again on business, I feel quite teary about people finding me inspirational. People being so generous as to tell me that and share that loveliness with me. People that I think are quite wonderful themselves.

Because I think deep down under the long encouraged humility and bloody minded playing down that I employ as walls around me, I think that it's massively important to me to think that I can inspire anyone. To do anything. And to be moved by me, us, this.

The tears are coming at last.
What a lucky girl I am

A head full

2011-06-28T13:48:00.000-07:00

Contrary to my earlier promises, I've been missing in action on this blog for sometime.
I have plenty of good excuses for this silence, all of them part of normal life and a bit more, that for some reason recently has become rather overwhelming.
So while I haven't been here, I've been quietly getting on with work, home, family and life and the very big thing that is my fundraiser. The first time I've ever taken it upon myself to do a fundraiser for something so personal, rather than mucked in and done them for nursery and/or school with a bit of us thrown in.
And it's very different, very different indeed, involving the unearthing of emotions that for many years have been squashed right down and continue to be on a tight rein.
I spend my time being tearfully grateful for every penny spent on the site and every lovely message of support, and every person who says they're going to come to the party we're throwing. Of being utterly overwhelmed by having reached my target and with so much more to come.

But then the gremlin comes in who takes every innocent lapse from friends or family very personally. Even though I KNOW how busy everyone is and that none of it is meant personally.
I struggle with the friends who took so long to tell me they're coming on the night, I struggle when I've sent gently nagging emails asking people to pay on the site so I can claim giftaid and have less to do on the night, and get no response and no action. And man is it tough to send those emails. Almost as tough as it is for this stubborn girl to ask for help, I mean any help at all.

Yep, irrational irritation and oversensitivity has been taking up too much time in my head and clouding all the good stuff. So last week I took myself in hand. I now avoid the FB event page, am done with those nagging/begging emails and lists upon lists of those who said they'd come but as yet haven't made an appearance.

Instead I'm concentrating on all the AMAZING people who are coming, and trusting that the others will as well, and at all the things that are lined up that I've managed to pull together from friends and family and friends of friends and pure dumb cheek and ballsiness. Raffle prizes and auction prizes from generous wonderful people, a huge guest list of friends and colleagues old and new and family and my closest supporters. A band who are generously giving us their time, a venue also, and the slightly growing calm and excitement that it's nearly here.

I'm a bit dizzy with the to-do lists but I allow myself as I type this to think that I am actually very very proud. Of me and of D for putting up with me and the family too.

On my recent annual girl's weekend, I found myself voluntarily 50ft up some very high trees attached to harnesses and zip wires for three torturous hours. With each new section I chose to carry on, unable to really enjoy it but absolutely frigging determined to do it and survive and hopefully deep down kind of enjoy it in retrospect. My friends who have known me for many many years and through many many times all seemed to be rather shocked. At precisely how pig headed and stubborn I was and could be, facing my apparently enormous fear of heights.

I'm telling this because I did this Go Ape challenge partly so I could use it for a life metaphor wherever I found it. For work, it allowed me to have a serious chat and say out loud that I was struggling to cope with the full time thing. A chat finally out of my head and house and in the right direction. For home it allowed me to see that while the fundraiser has been tough to do essentially on my own, I'm not steaming through it head down angry and determined to finish. I'm enjoying the sensation of achieving, enjoying the pride in my friends and everyone else.

And I will find the time to work out what to wear, how to look in the mirror and do my hair and makeup and look and feel nice, and most of all, how to host a party and enjoy every minute. Even the stressful busy and inevitably emotional bits.

Bring it on. My page is on this link below. Come see what I'm talking about and thanks all who do.

What It's All About

xxx

Monday on a Train

2011-06-06T07:47:00.000-07:00

Today I left for work with a wonderful send off from my big boy.

He stood at the door and the final image I have after his "bye, love you" was him motioning for me to put on my hood as it was drizzling, before he shut the door with a smile.
Just thinking about this wonderfully small moment makes me grin.
How lovely it feels to write about this and not the more mundane, stressy, annoying, uninspiring, confusing other things that swirl around in and among the sparkles of happiness in my day to day.
So the post ends here, on a smile and a lovely wise silly caring and special little 6 year old boy
Xxx

Here's One I Made Earlier

2011-05-17T01:36:00.000-07:00

Thought I'd show you all a little progression in my handling the new diagnoses. Best way to do so is through a little blog post I did for the wonderful Different Iz Good.

Momentary Perspective Post for DIG

xx

18-22+2-6-7-15-19-x-x-

2011-05-11T02:48:00.000-07:00

Yep, the title of this post is a jumble of numbers and symbols and I'm here writing to try to clear the mangled contents of my brain as a result of the above information. So please excuse me if today's post is blurry and a bit erratic.
A few months ago we embarked on a new microarray test for my little man because of something the clever guys at Chromosome 18 had found on analysing our blood samples for the study. At the time I allowed myself to be a bit fuzzy and confused and latently concerned until I could react for real at whatever we the test confirmed. This is how I felt then Even More Special Post and this is how I feel now.

First the Facts
The microarray technology is now widely available and extremely detailed, and it has therefore shown that what L in fact has is 18p- and 22q duplication. So a bit missing from Chromosome 18's short arm and a bit extra on Chromosome 22's long arm. Both of these are registered genetic disorders. On top of that it seems that 7 other chromosomes have copy number changes going on too, although very small so not recognised as syndromes. That means that throughout my miracle boy's body he's got too few copies of genes in some places and too many in others, and this doesn't necessarily balance out into a neat mathmetical equation. If only that were so.

Then the Bad Feelings (imagine me stamping my foot red faced and tear-stained)
I mean, really???????
Wasn't one extremely rare-hard to understand-worrying genetic disorder enough????
Does he really have to have two phenotypes that I have to pay attention to and invisibly sew their archive of into my brain?????
Does he really have to be this frigging rare and unique and special?????
Have I really worked this hard and replaced so much of my brain storage on this one condition to now have to find room for another and try not to worry about what the other 7 little things might mean I have to know about???
Do I really have to go and search out another virtual family of lovely kind parents and say "Hi, New to the Group?"????
I don't want this. I don't even wish I'd known it 4 years ago when we got the diagnosis. I just, for the first time ever don't want any any part of it.

Now to force seeing the Good
If I'd known this 4 years ago with my head how it was then it's doubtful I'd have found my Chromosome 18 family.
Not one number or letter revelation makes an ounce of difference day to day for my amazingly fortunate and typically developing boy
I always kind of knew that he wasn't quite the same as the other 18p- kids and so I'm glad my instincts still work and there's a reason for those feelings of unquiet
Knowledge I guess is power and it's not like I was ever going to be able to relax and say "ok, mothering is all done now"
I'm not being kicked out of the organisation I have grown into. I will still do my fundraiser, I will still sit on that management committee, I will still wear my badge with pride.
This propels me back to the world of the wonderful charity Unique and makes me more determined to do anything I can for Jeans For Genes in addition to sitting on their Parent Advisory Group.

But it does feel quite shit. I do feel a bit wrung out when I allow myself to sit and write and think about it.

I'm going to refer to the lovely Wisteria one more time to try to end on something less black.
She's almost done revealing her amazing blooms. The leaves will remain for longer but essentially she's about to recede into anonymity and tangled confusion once more.
As such I hope that this riot of taste and smell and colour and confusion of these results will burn bright and then die down.
However long it takes I know I'll soon be back watching my boy, mothering my boys and trying to balance the elements in my life and appreciate all the amazing things we have.

Thanks for listening. Hope to be done with blooming soon.

Purple Postscript Blossoming Into My Day

2011-04-27T06:14:00.000-07:00

I've written before in my Symbiosis post about the tree that I see in the park every day, the photo of which I had entitled Ivy Tree.

I've just come back to work from a lovely week off, plus bank holidays, where the park took on a new guise - a place for me and my boys to play and eat ice lollies and meet friends, and bike ride and run and have a blissful time together. During which a change occurred that I only registered on my way to work yesterday...slightly dragging my feet, quietly trying to build myself back up and re-enter real life with a smile.

So to my complete joy I was lifted by the Spring appearance of this my favourite tree and its guest, which has gloriously revealed itself as an amazingly tangled and currently flowering Wisteria.

I am so enamoured by this discovery that it makes me smile just writing about it. On my way home last night I took a detour just to try and get a snap of it on my phone to add to this post.

What I love most about this discovery of a life cycle is that nothing really has changed, but wow, what a beautiful fanfare this tangled intrusive old thing is giving us as it blooms briefly before settling back into quiet anonymity for the rest of the year.

Being me, I'm finding something personal in that.

I've been talking a lot on my time off about how amazing the age of 4 has been for my little man. How healthy and strong and developmentally spot on he is right now and how utterly grateful and priveleged I am for him and us about that.
I'm finally off red alert, happily sitting on greeny amber. My sister always said that I should look ahead to this time that she hoped would come, and be aware and ready to catch myself if my head and health started to slide a bit.
She was right, as always, because ironically I feel more worn out and down and old and tired than I remember feeling ever. Lots of things feel like an effort.
Lovely Happy Sara is stretched very thin and possibly doesn't appear in the right places enough.
It's harder to motivate myself and detach emotionally from the niggles and the wrangles of those around me.
It's harder to eat well and sleep well and think about exercise and drawing and writing and the things that are good for me and that I like to do.
It's harder to be as loving in person to the wonderful man I share my life with as I am in my own quiet space.
And that's the hardest thing of all.

So these purple flowers are helping me to embrace the scent and brightness of all that's around me. I hope to bring that home with me a little more than I have.

Oh and to my new followers, and all the old ones. Hello and thanks so much for joining me. I'm ridiculously childishly excited to see you here and I promise to try and visit you all here a little more often.

Wish a Happy Flowery Purply Spring to us all
xx

Throw those curtains wide...one day like this a year will see me right

2011-03-30T04:48:00.000-07:00

Yesterday I found myself in an emotional state, tearful, on the edge of sobbing for no real reason, even at work where this Sara barely ever comes out to play and work Sara in turn barely shows her face here.

I'd started the day taking L to the docs for another ear infection, having niggles with husband over having to do the grunt work by myself having been home alone for the weekend, and I was generally feeling over it all.

I enrolled best friends to help with this wobble and used their messages and texts for letting some tears dribble out. With my colleagues I was quiet, honest about not feeling very bright and breezy. I ate comfort food, I read things, I watched things, I tried to get inspired and over this fug of "dis" that had entered my office since last week. Discouraged, disheartened, dispirited...all by the run of luck on one amazing project that I had possibly invested a little too much of myself in.

I had a random call from a random friend who helped me to draw a line back to when I last felt like this. Back a few posts to the Kindness entry. That helped identify the similarities and put a flag in in case the links become apparent (oh and if I'm honest, let me search and not find any obvious hormonal link)

So I got through the day and even achieved a little bit of something too.

I then went off to the O2 to watch Elbow in concert with my big brother. We were spoiled as VIP's by my lovely friend so got to eat and catch up first. We then got to experience this amazing proud Manchester band be funny and talented and in my case, lift my soul.

As I watched I thought and thought about the person behind their "Seldom Seen Kid", my family friend, a missed and loved son of one of my "adopted mummy", best friend of my mum. His memory and the tragedy of him no longer being here to experience all the other bits of him that I was too young and then too far to know, let me trickle out some more of those tears.

In contrast to the night before I came home late, fell asleep without needing to distract myself with reading, and apparently around 2am had a funny conversation with myself where I giggled and laughed.

Today I feel ok. The packed lunch had been made by someone other than me, the medicine administered, the homework done, the shopping had been put away. It isn't a red letter day by any means, but I did throw the curtains open wide just in case it was.

So thank you Elbow, thank you Bryan, thank you husband for pulling your finger out and thank you friends for hearing me

Public Private

2011-03-23T05:01:00.000-07:00

Stuck on a tube train last week I was struck by thoughts of how this blog must look to my big boy.
How he would react to it if he read it now or in the future?

I love my children equally, ferociously, and for many reasons the same and many different. Which is kind of different to my Mum who strove and still strives to love us all the same and finds it hard to pinpoint what she likes better about any of us. As if it would be a betrayal of her motherly duty to do so. While I admire and love the equality in that, it's hard sometimes.

I also remember a moment when my sister commented me that I look at my boys differently and at the time I was defensive about that. I now think she's right though, because I know there's a sense of foreboding and relief and intricate study when I look at the little one, and sometimes with my big boy, I don't know who's the parent and who's the child because he's so wise beyond his years.

One thing is sure though, that I love my children for all the joy and pain I feel and have felt, and through the momentous and incidental moments that life brings our family.

So I feel I'm balanced about this, but I don't know if this blog can ever reflect that. Because here I write about me. Here is, by definition, about me trying to find a middle ground in all areas. Yet because of who I am and how important the mummy bit is in me, my posts are often precipitated by them.
My boys.
And as a result of his jumbled chromosomes, one more than the other.

Reading back I have a latent worry that one child might appear not to feature enough. But also that a blog about overcoming challenges might make the other child think that that's all he is or was.

So for the record and to have a post for them to read first should we get to that point, here is what you beautiful boys mean to me. I hope you'll know which one is for you as you read:

Your smiling cuddling joyful heart healed mine the second you appeared inside me. You are growing serious and I fear that you feel and know so much that by being open with you about the tough stuff, that I may have robbed a bit of your childhood. You are special and kind, strong and soft, confident and anxious, clever, brave and scared. You are my wonderful boy and I'm proud to be your Mummy and grateful for your magic healing ways.

While your story has bumps and trials and pain right from the start, that pain is often at the systems that make it hard and the people that don't get it. Sometimes at the things that make life a bit harder than it should be for you. But never ever at your triumphs, your existence or your challenges. You hold only joy, smiles, delight, heart filling warmth, pride and will always have my admiration for how you exceed all my hopes.

All I can ever hope to have given you both, above all else, is a love of each other . An appreciation of the lovely people I hope you meet and all the beauty the world has to offer, and a huge does of stubbornness and charm mixed just right to ensure a smooth path through.

here and now...

2011-03-07T02:44:00.000-08:00

I was cementing this morning on my journey to work some thoughts that I've had for a while. About how life is so cheap in many countries around the world and how lucky we are to hold it dear here.

How lucky I am to want to rub my child's head better when he bumps it, or put cream on a graze or lavender on his throat.

How lucky my children are to live each day limbs intact, walking to and from school where they will find people and institutions that want to educate, nurture and feed them.

How we live in a time where thankfully more of us manage not to lose our children in childbirth or soon after, unlike the generations before us when it was something that they just got used to and legislated for. It still amazes to me to hear stories of the ones that didn't make it back up those family trees.

Even though I know where my family came from thanks to the diligence of older cousins and aunts and uncles on all sides, I still don't really know how this soul in me got to be so lucky to emerge where I did. Not in a war-torn African village, or a remote spot in between North and South Korea, or in a slum in Brazil.

The papers are filled with chaos and war in the Middle East and worse, the silent non headline-making facts of lives all over the world filled with a pain that the people there have long since questioned.

How lucky I am to worry about the nuances of the lives of my children, my husband, my siblings, my family.

I hope that one day I can do more than be thankful for what I have, and slightly guilty that I'm thankful that I don't have the lives that so many people around the world do. Until then I'll continue to try to sprinkle my bits of sunshine and glitter when and where I can.

Allow Me Some Repetition...

2011-03-02T05:00:00.000-08:00

...because sometimes it seems that no matter what I do, no matter how clear, patient, heartfelt and generous I am of other's sensibilities, people still don't get it what this all feels like. I am learning to express that this makes me feel very angry, upset and frustrated.

I've had a perfectly nice response to my very honest vulnerable outpouring about various recent events, but one message contained within has forced me into my cave, for fear of saying the wrong thing and making everything worse, rocking a boat I don't want to rock.

What do I have to do to explain that it's not just the medical that is or will be altered by my boys' genetic disorder? That the "faulty" genetic formula in every single cell of his body makes him by definition NOT the same as the majority of the population. How do I prevent the fact that everytime I hear from people who I hoped knew better that he is the same, I get less rational.

When a child rages and cries, we tend to find a distraction. So right now I'm distracting myself by reposting the first contribution I made to Different Iz Good that seems to say how I feel more safely.

I’ve been thinking about what my first post for this site should be and have thunk my way right here.

I’m Sara, mum to two wonderful boys, my youngest having 18p deletion, a rare genetic disorder. Where my little man and some of his other 18p- buddies differ, is that (at the moment at least) he sneaks under the radar. He walks, he talks, he looks like everyone else…so really he doesn’t seem to be different at all and he doesn’t have many of the negative effects that looking and sounding different can bring to a person.

What I have found out though, is that when you have a child who has a diagnosis, but on the surface seems to be the same as everyone else, the negative connotations about being different are still there, and still applied to him, but in a well meaning and topsy turvey way.

I’ve lost count of the people who’ve said “but he looks just like everyone else” or “you would never know there’s anything wrong” or “they met him and didn’t even know there was anything different”.

It’s always said in a way that I absolutely know is meant to make me feel good and I have realised it’s a very complex thing as to why it doesn’t have the desired effect. What makes me feel worse about my under the skin horror of these comments is that it’s often said by people I trust and love – people who teach him, know him, love him, love me…and it’s quite complicated why it bothers me. So if you don’t mind, I’m trying to work it out as I type.

Firstly I think I bristle out of loyalty to everyone out there who isn’t the same as everyone else. Because saying to me that my child is the same, to try to make me feel good, feels like a huge betrayal to all of them if I take it as it’s meant, as a compliment.

Secondly because it makes the assumption that it would affect me in any negative way if he wasn’t quite this lucky and typical. Because that undermines the fierce love that I have for him, and would have in equal measure if he was blind, deaf, dysmorphic in his features, in a wheelchair, unintelligable in his speech and so on…

Thirdly it also undermines the things that go on behind the scenes of his “normal”. Behind the curly hair and podgy cheeks and the sparkly eyes and magic smile and the seemingly uber-coping Mummy. The immune system that can take us by surprise, the concentrated learning that is endemic in our daily routine, carried out as subterfuge to all involved. The physio that also slips into that routine, the constant checkups, the worry about all the things that his magic genetic makeup can and will bring to us, and the fear of everything I know.

Fourthly because if I allow myself, or anyone else to deny that he is different, rather than empower them through him to respond effectively to “different”, I am not doing what I was put here to do. And I won’t be doing myself or him, or indeed them any favours at all.

Me and my boy are who and how we are for a reason. I have always told him and anyone else who’ll listen that he isn’t the same as everyone else, but woe betide anyone who treats him as if he is. Like it or not, our society is full of cruelty behind all the quiet good intentions of the good people who float within it. People are squeamish about disability, about things they don’t understand and indeed fear in the depth of their souls for themselves and their families.

So if my boy right now can be a poster child for people who need help dipping their toe into the water of tolerance and understanding around disability, then I’ll take that as a clear wonderful mission for us, while he’s still “typical” enough to do it.

But do me a favour, spread the word for anyone working or living in the London area. Watch out for pointless platitudes spilling out of your mouth, supposedly to make a parent, or sibling, or grandparent feel better about their affected relation.

Because that recipient might be me

And I might not be feeling as kind as I am now

thanks for listening and see you here soon

3 random thoughts after 10 minutes of browsing tabloid online sites

2011-03-01T04:02:00.000-08:00

1) I'm very disturbed about the Aretha Franklin article saying how she's lost so much weight by cutting out hamburgers. Now, I love Aretha, one of my faves, but this is a ludicrous article, contributory to the rot of the "famous people need to be thin in order to be a good role model" epidemic. Aretha's family confirmed she had cancer not 4 months ago, she's just been hospitalised for some other "illness" and clearly, wonderfully is changing her life and habits as a result. Do we really have to have a lecture about burgers vs salad and ignore all of the above for her "amazing" weight loss? Sigh, the "celebritying" of cancer...I've seen it all now.

2) Joanna Lumley and Rosamund Pike are built from the same exquisite posh blonde beautiful mode. (shh, don't think about the BAFTA "and the award goes to" memory, move on). They have the same even smile, deep smooth tones, inspire the same reaction of "wow, I so don't look or sound like that" from me. All I can think of is why hasn't anybody cast them as mother and daughter yet? Maybe I should.

3) John Galliano. Deary deary me. Nuff said.

And a final pointless ramble on this post with no depth but that curiously makes me smile.....

I used my Burts Bees lipbalm on the way home last night and found my finger touching the metal of the bottom of the pot. I grinned a huge grin because I try really hard to finish things rather than throw them away when I'm bored.
Just like I try to wear my clothes until they fall apart and rarely buy anything new, despite my devouring of Style fashion magazine each week.
Just like I enjoy using the stuff I can't recycle and can't bring myself to throw away for many strange and wonderful things. So this morning I smiled when I opened the raisins to put on the kids cereal, and untied the sparkly elastic band I rescued from the tag wrapped round some chocolates we had, having recycled the tag and held back the band for later use.

Sigh.

It's the small things that count

Kindness and Tears

2011-02-23T02:51:00.000-08:00

I wrote this post on the tube last week after a particularly lovely meeting with a particularly lovely old friend. In that meeting I felt the tap turn a little as my eyes welled up a few times during our conversation. I felt moved to write about how I might go about taking on board his parting comment, and being kind to myself.

Walk at the pace you feel like walking as often as you can.
Let the tears trickle when someone moves you.
Accept the compliments you're lucky enough to receive.
If you must analyse what you did to deserve that compliment, do so by defining your part in this thing that someone admired.
Heed advice from people you instinctively trust.
If you don't have room in your baggage for this advice, store it somewhere you'll easily find it again.
And try to take your own advice if you're sure you believe that you give it in truth.
Clap and cheer to your heart's content regardless of whether the people around you are doing the same.
Take a long, deep, slow breath whenever you feel the need.
Identify the people you meet who can see into your soul and try to keep them in your life.
Believe in your own potential as much as you hope that others will.
Sing
Dance
Laugh
Enjoy the birds and trees and flowers
Hug your loved ones
Smile at strangers
Cook nice food and concentrate when tasting it
Write when the mood takes you, with a pen, a phone or a keyboard.
Try to embrace the constant movement of life and stop working so hard on that dam you've been building
Keep your softest part only for those who will value it.
Trust your voice and your heart

When I got home, all floaty and happy, I was brought back down to earth with a bump through tales of more behavioural mayhem with my little man. A deep fury and impotent rage started to build at how the incident had been handled. Mummy guilt flooded in, confusion as to what exactly had happened, fear at what this continuing pattern is suggesting and all kind of everything.
I guess with my soft bit having come up to say hello just a few hours earlier, I called my mum saying "please can you calm me down" which seemed to be code for "help me to open up" because I knew that simply having to talk to her on the phone would stop me squashing the threatened tears.

So I started to cry, and cry some more, to my mum, to my friend whose little boy had been at the sharp end of L's foot, quietly while Daddy did storytime with the boys, and later with my most welcome diarised therapy session.

For nearly a week I've sat on the initial post, not quite sure whether or how to publish it. But today it seems to work as part of a clear picture of my constantly changing emotions and I am glad not to feel ashamed of it at all.

Symbiosis

2011-02-14T04:21:00.000-08:00

I walk past this image at least once a day in the park at the end of my street . I could take a more direct route through to the tube station, but always find my feet walking me this way. This morning I realised it was time to pen a small note to work out why.

What I see here is intricate and interesting and kind of wrong in the middle of a park full of neat, planned and ordered foliage. It strikes me every day and I have thought more than once about stopping the park keeper to ask how long it has been there? Whether the ivy affects the health of the tree? Is that a stump it’s growing on? Whether they ever think about cutting it down and releasing the tree of its needy interloper? Or which of them actually came first?

But I never do. (Not just because I think the park keeper hates me, you see unlike the other gardeners there with whom I have a happy hello-filled acquaintance, he either avoids my eye with no great subtlety or gives me a grudging smile if he absolutely has to…Anyway, I digress)….

I don't ask because I just love it as it is. Love that I don't really know whether it is a stump covered in ivy, opportunistically grabbing onto a tree that was unfortunate to be standing right next to it. Or that the new tree was planted next to an old thing and they’ve developed a symbiotic need and love for each other. I love that it makes me slow down, often stop, just to look across and down and up to see whether I can see the join. Whether the tree is behaving as it should and marvelling at the sheer tenacity of that ivy.

I even enjoy the comparisons I find and the images it puts in my head; about me, my son, his magic DNA, what a pretty way to see something uninvited become so very…necessary somehow.

However I mostly love that in this picture, the sun is shining down on them both, as it does on us all. Plain or startling, boring or exciting, healthy or wizened, different or the same. Not how anyone planned it I’m sure, but glorious nonetheless.

You can also find this blog post at www.differentizgood.org

Ode to Special Mummies Everywhere

2011-02-02T02:40:00.000-08:00

I wrote this email in response to a plaintive cry from a dear friend from our C18 register. An eminently sensible, intelligent and capable woman who had just returned from the latest in a long list of specialist appointments where it was down to her to direct the doctors who are supposed to have been watching her darling child carefully. And unfortunately down to her to point out that they'd missed something vital.

As I sped my way down the Northern Line from work to home I typed and grinned and hoped that this would cheer her up as much as it did me as I typed.
Thankfully it did.

Dear parent

Thank you for your post that our readers all understand and Gah! in support of.

One small error however that we feel we have to correct is your assertion that you don't have any letters after your name, unlike the so-called experts you are faced with.

It is therefore our pleasure to inform you that due to sterling work as a member of the "special parent" group for almost a decade, you are now officially qualified as an orthopaedic, renal, cardiac, endocrine, audiology, educational, podiatry, opthalmic, pulminary, maxillo-facial, speech, OT, PT specialist.

Please feel free to add any appropriate letters after your name (and a sneaky FU should you be having a bad day) and carry on the great work.

Exhaustedly (and sometimes inebriatedly) yours

Sara J, joint spokesperson for the "I don't Know How You do It" support group
Xxx

Hooray for friends and support groups, the kindness of strangers and caring people everywhere. What would we do without each other.

The Law of Averages

2011-01-26T14:23:00.000-08:00

I am choosing to learn a bigger lesson from something small that happened today.
Following an appointment with a lovely dermatologist for the rashes that lurk under all my winter layers, I carried with me today the prescription for two new creams to try and a plan for if they don't work.

So, I went to one pharmacist before lunch with a friend, and they could only provide the first cream on the list. They said they'd order the other for me which I politely declined.
I then went to another place nearby after lunch and they seemed to have both, and then realised that they'd sold the last of one, so could only do the second. I asked if I could split the prescription between the two pharmacies and they said I couldn't. They also offered to order them and I again declined, feeling fine if a little frustrated..

So on my way home walking up my local high street I had one more chance at the big supermarket pharmacy where surely they'd have both.
Wrong, they actually had neither and then tell me that there's a problem with the manufacturers of number 1, so they can order number 2 but don't know when they can get the other.
Polite facade dropping, I'm now quite frustrated and leave trying to be a bit polite though not feeling it.
I huff up the street, sighing and feeling a bit crap.
I then remember that there's another pharmacy between here and home and I'll try them.
Deep breathing as I go, trying not to let it be an excuse for a grump, I fleetingly think that maybe, just maybe, if the first place had cream 1, and the second place cream 2, the third neither, then by the law of averages this place should have both.

And lo and behold it did. Well nearly.
They had a lotion rather than ointment for number 1, but told me so nicely and kindly, confirming that it didn't really matter, that I took it. So I stood in the shop feeling happy, I even bought a little celebratory nail varnish and chatted breezily to the girl about her pharmacy exams.

On the way home I decided to apply this experience to various situations circling.

Plans are great but they don't always work out first time. Or even second. And often third time lucky turns out to be the unluckiest of all which is when your equilibrium decides to go on strike.
Then just when you feel it's naive to hope that it'll all turn out ok but maybe you can allow yourself to think it anyway, it can and often does do just that.
Not always in exactly the way you planned, but near enough and more than acceptably well.

And I rather like that.

a pause in the purge

2011-01-17T08:29:00.000-08:00

I've been browsing old entries, calmly deleting some of the saved but not posted, until I came across this one from that time back in the middle of last year that I talked about in my previous post.
Somehow I can't quite bring myself to delete it. Not because I want to wallow in the misery and upset (although I do have a whiff of that about me I know), but because it supports me acknowledging how I feel now. Proud and happy about how much easier all the hard stuff feels with some support in place.

I often wonder how people less educated, tenacious, stubborn and knowledgeable get through this. How they cope or achieve anything at all. With science able to diagnose more and more intricate chromosomal conditions, there are thousands upon thousands of mums, cast out to sea with only panic for company.

So for whatever reason, I'm going to post this and square my circle.

the post was entitled Cast Adrift

or where oh where has my paediatrician gone?

CW lament (these are the initials of my wonderful respiratory specialist who got us our diagnosis. The lament is that no sooner did the heart man sign us off, that our only trusted medical person started to prepare us for leaving, especially as we no longer had medical insurance and would have to shoulder the cost ourselves).
horrid iron supplement prescribed by mystery person (one of my many kidney trips to the hospital had us walking away with an iron supplement for low ferritin levels, which gave my boy the runs, but I had noone to tell so I just stopped and turned to google for nutritional advice instead).
urine samples flying round Barnet hospital (it really did take me hours on the phone and weeks waiting to get results, with each sample I sent, repeating myself ad infinitum with fear and frustration rising).
no apointments forthcoming (if you're a mum you don't get through the secretaries, so I didn't know when I was waiting and when I was being ignored).
noone knows who we are (see above)

and the rest kind of speaks for itself

noone can bring it all together bar me
not even his daddy - sometimes especially not his Daddy (sorry xx)

post it notes, big concertina files, blue book, red book, filofax, papers at bottom of bag, order but no order
and in the background, the man who got us our diagnosis and confirmed that our lives had changed for ever, is receding slowly into the distance
and there's noone willing to replace him
how am I expected to do it?
everything's changed but nothing has come in to help with the extra workload.
D new job so no time
no let up for me and I'm having to find more time when I don't think I was coping before
No insurance means lost respiratory specialist, noone else across my boy, who knows my boy, trusts my instincts
and it's all back on my shoulders.

cor. poor me then. lucky me now
Hooray

xx

A can do person in a won't do system - but not alone

2011-01-13T08:05:00.000-08:00

The first 8 words of this blog title were written and saved back in May last year. Back when frustrations of being at sea in a system that I didn't know how to navigate were rife. When fears of kidney problems through lack of information were overwhelming. When thoughts of how to get my boy listened to and considered for a Statement of Special Needs were in my mind all but impossible to achieve.

As I write this now towards the end of the first month of January, I can see that much has changed. The system in all its frustrations, lack of funding and incomprehensibility remains the same, but I no longer feel alone within it.

I sat at our genetics appointment yesterday lunchtime with the same doctor I've seen twice in the last few years, and felt protected and understood. Ironically at a time when I really wasn't crying out to be. Which took me by surprise.

She looked at the latest letter from my NEW paediatrician (sorry but I am still quite excited about this) listing all my boy's problems and challenges old and new, working her way methodically through them. Checking where each had got to, furrowed brow and open apologies that it's taken me 4 years to get what we should have had within months of my boy being born. Expressing a frustration and regret that I've learnt to lock away because it's redundant and stops me being positive.

She opened the appointment saying how she'd been trying to explain to the med student observing all the complications of diagnosis (or lack of) during my pregnancy. This was huge in itself because all that time ago it was the lab she's affiliated to that missed our diagnosis on the amnio. Most people would ignore that, or not reveal to me that she still remembered it at least. But she just took it as part of the history.

She returned to his still unexplained blueness on the list of issues, until she was happy that it hadn't been overlooked. She again apologised that I've been doing so much alone for so long and I in return told her that of all the doctors I have encountered, she's the sole member of the group who is brilliant at apologising, even when she's not responsible for the things concerned.

She said "we" should be able to get him a statement because he has a chromosomal deletion, but again relaxed when I said I was happy in the hands of our hopeful new inclusion teacher at our hopeful new school.

She explained the new genetics tests to me, said she'd call with results and explained the possible things they'd find and how long it would take. She looked at my boy and talked to him so kindly and was genuinely delighted at how successful he is so far.

Finally she came to see us in the queue for the blood tests and told me very earnestly that while she doesn't need to see us for 2 years, that I can call her for help or guidance whenever I need.

In short, she raced her way into my team. A team that now includes an intelligent and excellent Educational Psychologist, a Paediatrician, a GP, and a few other specialists. All of whom say how well he's doing, say they don't need to see him until I ask, but crucially know that this is just the beginning of the story and trust me to be their guide.

So when September comes and the community paediatrician and the keyworker step back, and possibly the physio and others follow suit, I now know I won't be alone again.

Even though I know I'm typing into a void here, generally unread, I love that I have this blog. Here I don't seem to go into coping mode like I do the rest of the time, allowing tears to trickle and sighs to be heaved as I process my life as it happens.

Consolidation

2011-01-04T08:57:00.000-08:00

I just had an urge to purge and have deleted the other blog I lead you to the other month.
I did it because I suddenly realised that the part of me who is trying my best should not be separate and this year for me, only 5 days in, seems to be leaning towards integration and consolidation.

So I've joined together the Sara's and want to acknowledge that I'm Trying My Best most of the time, even when it seems like I'm doing my worst.

Happy New Year!

An update on our "team"

2010-12-30T07:37:00.000-08:00

As we canter towards 2011 I want to mark the following things.

Firstly that the NHS has been really really good to me this year and that finally my little man has:

A named paediatrician. A clever, emotionally intelligent, efficient named paediatrician with a secretary that is good, a plan for when she's on maternity leave and an interest in 18p deletion.
A paediatric passport (that came in the post two days after we spent time at A&E on Boxing Day with suspected measles but still).
A raft of healthcare professionals that listen, advise, learn, help and are accessible.
And a mummy that knows a lot more about how to make it all work without getting too stressed.

So while life is still complicated, it's amazing to have the system giving us some of what we need to get on with it all without drama at every small hurdle.

With education, we have two more terms left at his really wonderful kindergarten and I've started to look forward with them about things that will help me with the school transition. On that note we've done the forms for school entry and I feel calm and as if I know as much as I need to keep on top of it. Having said that I have the plan in place for "if" it all ballses up like with his big brother (can't help preparing for the worst) and am ready to strip naked and chain myself to Big Ben if necessary this time.

We have the appointment in place for his new genetic testing so I can work my way back to neat and informed again.

I know and accept that I still overthink every rash and fever and also that I need to, but just as important is my D who balances me with careful (sometimes) scepticism.

I still think that when school does come around, that I'll have to be more than this very very part time mummy, but there's time to work out how to do that.

And there's so much more to really look at with regard to me, my stress, my coping mechanisms and how it might not be going quite as well as it should, but that's for another post.

So Happy New Year to all the people who help us to look after our family and thanks for restoring my shattered faith in the systems we have.

Winding Down

2010-12-16T06:42:00.000-08:00

It's a gradual process
This wind down to the end of the year
When my "time disorder" gets a little bit of a rest and I can look back knowing that this year took a whole year to get through
No matter how long the hours and days and months felt in my skewed perception
Or how confusing time continues to be for me in my busy happy challenging life
This year of 2010 will have taken 365 days to complete its journey.

My brain has already started sighing into quiet
I'm not even reading on the tube now
Just staring into space
Sometimes looking around and listening
Mainly just staring

So as I head towards my last day of work on Friday
ready to have two clear weeks of family time, me and my kids and my D
I'll get to be a happy mummy to bring this year to a close
Cramming our holiday with activities a plenty and some lovely big gaps of nothing for pyjama days and puzzles and drawing and films under a blanket

Mmmmm
I can hardly wait

Perception

2010-12-09T05:00:00.000-08:00

I had an interesting dream that has really stuck in my head.

In it I was living in my first childhood home and the garden was a big old mess of overgrown grass, hedge, animal poo and on the whole a not very pleasant place. In fact with an awake head on, I think it was a mix of the structure of my then lovely garden, coupled with the very real chaos and bramble of next door at that time which had a variety of hippy types living in it.

Back to the dream, aside from one bit where I was very upset to have to leave a kitten in the garden because everyone told me he'd be ok just left out there in the chaos on his own, my overriding sense was of being very frustrated. The main cause of which was this huge mess and decay that I just couldn't see a way to make neat and tidy and fit into the idea of what I wanted the garden in my home to look like. I felt like my nerves were taut and that I couldn't find the tools or time to make it safe and clean and healthy and that I was a failure for not being able to do so.

Then later in the dream after a brief segue into another narrative genre, I returned to my theme of wanting to make things better. Whoever I was talking to was engaging with me, so we went to the back room together to look at the situation. When we reached it I saw that the garden was actually neat, calm, ordered and with healthy plants and veg and all the things I'd wanted.

Dreams are there to show us what our minds are processing, so it's no surprise that the whole neat/messy debate is here visualised having been the subject of funny emails with my C18 family with regard to the new genetic diagnosis that is hovering.

But I also think it's about perception. In my head things are apt to feel messy and disordered, like I'm just not good enough at making it all work. And yet when other people look in (and I know this is something that other "special" mummies recognise too) they see Super Sara, someone who can just get it all done and find time to fit in more. Like parent rep duties, joining committees, helping out. It's another example of the "I don't know how you do it" syndrome.

So what I need to think about is, are they seeing the real thing or am I? Or is it not that simple...somewhere in the middle...or a constantly moving thing?

I love dreaming and I love deconstructing them when they're meaty enough, to try to find an impact that they can bring to my everyday. So I'm looking forward to untangling this more in those de-focussed times like my tube journey or in the queue for lunch

Even More Special

2010-12-02T03:43:00.000-08:00

A couple of times along the way, I've talked about how sometimes, all this genetic disorder stuff feels like my own dramatic construct. It's partly as a result of being so alone through the pregnancy and until our diagnosis at 9 months; partly because of how successful my boy is; partly because every diagnosis he has, has come from me pointing doctors towards it; partly because I often mix up dreams and reality and partly because I work with words and stories and that's a natural place for my thinking. My therapist says it's also a way for me to beat myself up, as I am often wont to do, picking away to try and find that I've somehow mucked it up.

Recently it's all felt like it's been working however. The family around us finally not so scared, the family who weren't scared knowing even more through attending conferences and sharing in my updates from my registry chums. We were even lucky enough to open our home to friends and families who genetically match our little boy. Enjoying the emotion and non-virtual hugs, support, tears and laughter that ensued.

I'm even close to getting a paediatrician and as part of the process have been merrily selecting information to send. Precipitated by my GP and the wonderful admin team there, helping me to feel like I almost have a team. Which in turn helped me to pull from the "denial archive" some of the handouts I got at conference and look them square in the face, working out which will be helpful to my newly assembling team. So, there I am, being all efficient, when I decide to contact the impressive Dr Jannine Cody to find out if they've analysed our samples and added my boy to the pretty picture showing the break points.

In a wonderfully clear and supportive email back I hear something I am absolutely not expecting. That in his sample he almost definitely has a duplication from a whole different chromosome going on, alongside his already identified missing bit from his 18p arm.

For reasons quite beyond me I am very fuzzy about how I feel about this. It needs confirming so I'm already contacting the geneticist at GOSH who was so lovely and helpful all those years ago. But I'm reeling a little because having thought I got it all, it now seems that there's even more to learn. Now I realise that this is what life is all about and especially as a parent of a "special" kid, constantly looking and learning whilst trying to relax into your normal everyday routine.

But I love neatness.
I love knowing how to explain things, to myself and then the people beyond me.
So for the first time in a few years, and I know this is all a bit previous as it's still unconfirmed, I feel quite confused again.

Not traumatised, or upset, or negative or depressed.....but, very patently and tangibly, confused.
At my own reaction, at the path ahead and as to whether anything, really, is any different at all.

My Sore Eyes And Sis

2010-11-30T02:01:00.000-08:00

I'm really quite happy with this recently invented title for my post, much happier than I am charting the gradual spread of rashes defecting from my eyelids and a few on my left leg, to covering both of my arms and threatening further border crossings. Is it possible to give yourself Psoriasis?

My eyes are still sore too but I've kind of run out of creams that don't sting or give me hives or that scare me by their side effects. So I'm going back to the doctor this week with a bagful of creams that don't work and a request for help. I'm also going to try with the hive cream again, just to check (while not home alone this time) that it really did give me that reaction.

The general thinking on the cause of all this is that it's all to do with stress, which is probably true, but I've been so much more positive in my head about various stressful situations that I'll be quite disappointed if I'm that unconnected to myself as to not know what I'm causing to break through the positive sheen.

What is more important for me right now is to keep lots of lots of positive thoughts flying through the air all the way to New Zealand for my big sis who is back in hospital for an operation. She is one of my favourite and most precious people in the world to me and I need her to get properly well so she can keep cultivating her house and farm for when I finally give in and cart us all over to live there to escape armageddon.

This one's for you Maccy, hives and all
xxx

pssssssssssssssst

2010-11-16T04:17:00.000-08:00

Just a little whisper

About an imperceptible release of pressure

A chunk of the cork at the neck of the pent up chaos and stress bottle, that seems to have wiggled its way free

The result of which has led me to a blog I started back in 2007
Over there, during what I now know was the most stressful year of last decade and my life so far, the person creating that blog and profile was trying to rise above it all.

It's a different me but another part of me all at the same time.

have a great day xx

Messages, signs, guidance

2010-11-02T03:15:00.000-07:00

To find yourself staring at your computer screen and typing Help into Google isn't necessarily a good sign. Nor were the aches and pains and head spins of this afternoon. So unfortunately, despite a lovely lunch with some lovely people, today wasn't going down as a day of note.

I left work trying not to spread my gloom, walked to the tube as usual, arriving to find my travel card had disappeared along the way, which made the anxiety levels shoot up a bit further.

As I hurriedly retraced my steps, calling the nanny to tell of my delay, I half noticed the relaxed girl with the water bottle, chatting to her friend and waving a distinctive, but common, blue Oyster card holder as she passed on her way into the station.

Brushing that off and rushing on by, all the way back to the office and then all the way back to the tube again, eyes down, still no sign of it.

Made a connection with the nice guard at Tottenham Court Rd station who told me what to do now it had gone.

I joined the long long queue of people trying to buy tickets at the two working machines at the peak of rush hour in a busy station. Trying trying not to cry or find a way to use this as justification of things being crappy.

I jumped out of the queue in indecision and a momentary loss of focus, then tried immediately to pop my way back in and convince the earphoned iphone reading man who had been standing behind me for 5 minutes that I wasn't just being cheeky.

Then all of a sudden the nice station guy called my name along the line, saw my thankful face as he held out my travel wallet saying to me "this is your lucky day".

As I hurried down the empty spiral staircase, travel card in hand, away from the rush hour throng, I cried quietly as I went, wondering
"Is it really?"
and trying to work out what, if anything, that last 15 minutes was trying to tell me.

I've got as far as a lesson in perspective, peripheral vision and keeping an open mind. All of which has made me feel significantly better writing this than I did a few hours ago.

If The Eyes are a Window to the Soul...

2010-10-28T02:13:00.000-07:00

...then apparently mine is a bit fogged up right now.

You see I would say I'm pretty good at stress, I've learnt to recognise it, feel it, acknowledge it...all of that stuff. I try to think about the effect it will have on my body, my relationships, my functioning generally as a nice and normal human being, mum, wife, sister, friend. In fact most people tell me I rarely seem stressed to them. You know the ..."I don't know how you cope" kind of comments.

Recently I've had a bit of stress from a parallel street in the map of my life, and for some reason my body seems to be taking the brunt. I have developed a strange skin thing around my eyes that on a bad day means I look like the Singing Detective, and on a good simply that I've aged 15 years in under a month.

My take on it all is that "I'm fine but my eyes are clearly very stressed", but it does make me quietly think that I might not be in tune with what lies beneath.

So when my eyelids swelled up after daring to wear a bit of mascara, I finally went to the doctor to get it seen to. She and her student went "OH!?!?!" when I took off my glasses which I later laughed about, continuing to joke my way through.

I used the cream she prescribed, which staved off having to don a pirate patch that evening at the posh and very fun Asian Awards that I was going to in support of my sister in law.

The cream seemed to work after just one day's application and as I stood in the mirror the following morning to assess the damage, I looked down to see an enormous hive on my forearm.

I've since found another patch or two of strange rashes dotted around and have duly informed my doctor (just as the scary side effects bit of the instructions on the cream told me to.....EXTREMELY RARE, IF YOU GET HIVES CALL YOUR DOCTOR OR GO TO A&E, DO NOT PASS GO, and don't worry if you call your doctor but they don't bother to ring you back...)

So the cream goes into the fridge and the eyes are deciding what to do now. In the meantime I've developed an ulcer at the side of my mouth which feels like my lip is protruding (although actually it's not) and this morning my neck and shoulder seems to have gone into a spasm, not to be missing out on the fun.

I'm thinking therefore, that perhaps I'm not so good at stress after all.

Ok body, I'm listening, now just tell me what to do about it.

in place of posting anew

2010-10-18T12:57:00.000-07:00

...I'm putting in a link to a post I did on a dear friend and fellow 18p- mommy's AMAZING new website - although right now the link doesn't entirely seem to be working.

The website is called Different Iz Good and it's part of Camilla Downs' efforts to make the world a better place. So please go and look at what she's doing and think about how you can join in, sign up and spread the word.

http://differentizgood.org

In case the link is broken again once I log off, go to http://differentizgood.org - there's some great stuff on there - and my little old post is entitled Musings from 4th October.

I'll be back here soon with updates following my busy few weeks of family, fun, smiles, laughs, tears, stress and more.

Happy Monday to you all
x

Having Said That - The Light Version

2010-09-28T02:21:00.000-07:00

To balance the commuter-fury post, here is where I force myself to flip the Having Said That rule:

I do wonder how this fragmented life affects my children...having said that when I watch them playing in their room, squeezing me on our hello and goodbye's each day, and knowing that they sleep soundly in their beds at night...I know that if I'm fine, then they are too.

I wonder what kind of effect this continual fire fighting or latent stress is having on me and my health...having said that, I trust that I will tune in and listen to my body in time to catch anything brewing.

I wonder if the various balances that feel lop-sided are ever going to level out...having said that I have to trust the day to day. I have to know that I can only try to do everything to the best that I can. And I'm pretty sure that I do.

I wonder if I am missing all the good stuff while I float and flap my way through this life...Having said that I know what's good, I can taste and feel all that is beautiful around me and I do live in the moment. So recall of those moments is not as important as feeling them as they happen.

Deep breath
Balance attempted and partly achieved
Have a great day

Having Said That - The Dark Version

2010-09-28T02:19:00.000-07:00

Last week, running running through my head as I sat on the tube, swearing inwardly in a non-zen state at the shambles that was my journey home, was the phrase Having Said That.
Here's what I wrote to distract me from my journey:

Said to fellow passenger "I'm not going to complain"...having said that how the ** can they make me wait 15 minutes for a High Barnet train then change the destination at the last moment forcing me to squash and push just to get on a train that won't get me home to my kids.

Said to various people in response to how do you do it, "well you know, I tend to cope pretty well"... Having said that I have found myself increasingly less zen and relaxed recently, leg jiggling at a furious rate at all times of the day and night.

Said on former blog post " I'm clearing head space one drawer at a time"...having said that no sooner do I clear them than I seem to overfill them again and the trees go back to obscuring and obliterating the wood.

Said to myself "that I have perspective and don't sweat the small stuff"...having said that, today I seem to be filled with what feels like murderous rage at the inflexible money grabbing of Virgin Trains and the inefficient shitness of the Victoria and Northern lines at rush hour. I have become that frowning muttering commuter.

And said quietly in my head when it all feels too much, "I can cope, I CAN cope"...having said that sometimes, like now during these moaning tube-written, travel-fury propelled thoughts and words...I don't always feel that I can.

Having said that...this hastily typed blog, in the corner of a packed tube carriage, finally safely on the way to pick up my big boy in the nick of time, finally with a seat, a bit of air and a tube that's bound for home, gave me some much needed perspective...and I guess things are not as bad as they felt 15 minutes ago.

Fancy a Game of Au Pair Roulette?

2010-09-14T01:56:00.000-07:00

I'm a thoughtful type, but most of the thinking gets stored on post-it pads that get turned into to do lists and disappear under scratched out lines, or they melt into my eyelids as I drift off into sleep each night, never to reach conscious fruition.
Three weeks on from my last post and I realise that I've been away from the computer not due to "can't cope, can't write" but "can cope and am too busy to write".
Busy controlling the barely concealed chaos I've been living in for the last few years.

As a full time working mum I've written before about living my life by remote control. In emotional terms that means putting a huge amount of faith in the girls that come to join my family and help me out by looking after my kids pre and post school each day. It's a lottery because you can trust your wonderful agency who provides the girls, and you can give them all they need, but you can't legislate for who they are, what they want and whether the chemistry is there.
I've been very lucky over the years and have put in a lot of time trying to integrate anyone who looks after my precious boys into our family. Just like Martine and other au pairs from my childhood, who held a very special place in my heart and still do.

This year for many reasons the game roulette seemed to symbolise this area of my life. My kids were happy, well fed and looked after, but I didn't realise (or wouldn't let myself see) until a change came, that that's where it ended.

Then a month ago a bright energy entered my house, and family, and through her enthusiasm, conscientious nature and essentially who she is, I'm drawer by drawer, cupboard by cupboard, room by room, sorting out the chaos I thought was just part of life.
Sorting the things that people don't see. The things that would help those friends who say "I don't know how you do it" that I make a hash of it just like we all do sometimes.

So as I head towards a ridiculously busy 6 weeks with visits from my darling sister and family, batmitzvahs, weddings, home alone time while D travels with work, appointments, work and life itself, I feel like I can do it without too many knots in my tummy.

Each morning I am getting great pleasure in getting things out of my very neat, very ordered, bathroom cupboard.
Each evening I am grinning as I open my computer in my new office/spare room, and look at the empty cupboards thinking what I can put where in this slow, calm, happy organisation of my life.

page by page
drawer by drawer
room by room
minute by minute

I'm trying to live and smile
I'm trying to enjoy small triumphs
I'm trying to grin and eat those little doughnuts along the path towards the big creamy cake of hope and ambition that I sometimes allow myself to dream of.

The C18 European Conference

2010-08-17T03:33:00.000-07:00

I've been thinking about writing this post since before going to the Conference which took place in Glasgow over the weekend of July 30th.

Having got myself Mum and L there, experienced it, come away, gone immediately on our family holiday, come back, immediately settled in my new childcare, immediately returned to work, immediately waved goodbye to hubby on his business trip.....I'm still thinking about it.

So here I am deciding to write it instead.

With reference to the title of my blog and those of you who read some of the posts here, it won't come as a surprise to know that I was quite scared of getting overwhelmed by the whole thing.

Overwhelmed at being in a room with all these people who know what my life is like having never met me. Who know what my son is like having never met him. Who exist, in glorious technicolour and with moving parts, not as virtual email, facebook or blog friends. Who have children older than my little man, perhaps sicker than my little man who therefore open doors in my head that I am so very good at keeping gently closed.

I often talk about living a lonely life being the only person I know in my surroundings who has the elements I have in my day to day. But there is secretly and psychologically a comfort in that, because if it's in my head, it won't be judged and maybe it won't hurt as much or sound needy or ungrateful or dramatic.

So to finally come face to face with actual people who know where I'm coming from, have as I now know way way more challenges than us so far with my lucky miraculous little boy...was and is kind of HUGE for me. Even as I type, force myself to think and write, I feel a bit wobbly.

And Yet.

The experience was amazing. The people were amazing. All the things I feared happened and even they were amazing. The organisers were tireless and smilingly amazing (Bonnie, Chris, Alistair and all). The superstar Drs Hale and Cody and all the contents of their brain that they so generously shared were amazing. The wonderful Rick Guidiotti and his energy and light, the mums, the dads, the kids, the grandparents, the siblings...all amazing.

I was and am still struck by the lack of judgement of any child's behaviour or appearance that weekend. The kindness and warmth and emotional intelligence that filled the rooms we inhabited. The worry and the honesty and the advice that people shared. The smiles and hugs and welcomes. The guest speakers. The sneaky look at the name badges and the not so sneaky "I'm a p, what are you?" people like me.

I know I'll be absorbing the experience slowly from now on and that I have got to find time to let out the emotional response that I'm gently pushing down. And those are the emotions of entering a home that you kind of wish you hadn't bought, are still slightly in denial about all the cracks in the walls, and yet feel terribly terribly lucky to have found.

I described my weekend to some friends and my sister as overwhelming, wonderful, sad and happy and very hard all at the same time. I found it very humbling to see how challenging some people's parenting is with the medical issues that their kids combat daily. I can't find the verb to describe my own feelings as mother of my boy. My boy who walks, talks, runs, plays, breathes, eats...and does so on the whole looking and acting as a typical nearly 4 year old.

My challenges however were crystallised. I have to garner the strength to keep knocking on doors and keep checking that the challenges he has are still moderate and tolerable. That the problems we know are out there for our kids are not finding their way into him. Dr Hale said a sentence that I want to carry in my wallet, medical file and heart. If you don't check, you won't know if something is normal or not.

So on I must go. Back into fighting the system to insist they find me a paediatrician or the kind of GP we need. To insist they keep me on their books even when the annual check is unchanged. To insist on even getting the annual check in the areas we need in absence of any big signposts telling them they should do one. To keep finding ways for them to take seriously my maternal instincts, C18's research and my opinion of the kind of care my child needs.

And to keep looking beneath the curls and smiles and magic of my boy and join us in our proactive, stubborn, positive and super informed approach to him, all he is and all he can be.

Thank you Bonnie, thank you Drs Hale and Cody, thank you Denise, Kristen, Katharine, Rick, thank you mummy for being my calming rock, thank you L for being my super boy.

I will fundraise for this for as long as it needs me.
I am proud to be adding our records and DNA to the scientific study and of all the good it can do.
I am shallow enough to want to be a proxy member of the Italian contingent who looked so stylish and beautiful that they rendered me quite mute. But I am able to balance that with a deeper admiration that they attended with their therapists and carers to learn alongside the affected families.

So onwards to 2012 and may all the days in between be happy.

lots and lots of time gone by

2010-08-12T14:19:00.000-07:00

I'm breaking a blogging silence that seems to have crept up on me.

I think it all got a bit too much and I went into coping turtle mode with work home work home chores work home....you get the picture.

I'm just back from a very much needed 9 day day holiday and am at the end of a very promising day 1 of a smiley happy new au pair living in my house. Today I got L's first neuro test out of the way and with friends and old nannies around to help the new childcare, I am ready to go back to work tomorrow without a feeling of dread.

I have also been to my first C18 conference and survived without getting too overwhelmed and indeed genuinely enjoying myself. It was a all a bit of a kick bollock scramble getting to conference and then going away on holiday less than 12 hours after returning, but I am slowly absorbing all I saw and heard there.

Lots has happened since I last posted, not that I can really remember when that was without looking(possibly even before the kidney appointment in June which rattled on a little...more about that another time) but I will endeavour to look back, dig in and come back here with anything worth saying.

What I do know...before I pop off, is that I've now read two Diana Athill books and I'm even more excited about her than I was in my post

So as I tentatively type this and retread this neural confessional pathway, it's nice to be back.

Inspired

2010-07-01T02:06:00.000-07:00

I watched a TV programme about Diana Athill on the eve of my 38th birthday, and found myself inspired and thoughtful.

This wonderful old woman with a career as an editor, and views as a human being, really stuck and I had her buzzing around my head right up until I went to sleep.

I love how she dedicated her time to editing and nurturing for most of her career and then only late in life found her own voice and wove beautiful patterns with it.

To put it crudely, it's like she's foreshadowed all this blogging. She chose to write about her life when it wasn't the done thing, making a point of not editing herself in order to be truthful and frank. She put it out there for people to judge or accept and then walked away, knowing her part was done.

A comment that Jean Rhys said also chimed with me, and was echoed by Diana herself:
"When you write about a thing you forget it...or least it doesn't worry you anymore"

That's how I feel about my blog and when I come here, I do so for many reasons.

To show a little to my friends to explain what I don't communicate effectively in real life. To help anyone who might stumble upon my words, who has the same challenges as a parent of a not-so ordinary child. To simply write and write. And to force myself to look at the things inside me - sometimes to find a positive spin, sometimes just to write and purge and move on.

Following the TV show I ordered books and books that were referred to, some by Diana, some by authors that she edited. I'm excited about returning to books and the passion that I had right through my education and beyond for them, which in recent years and through my career has been overshadowed by the scripts and treatments that litter my desk.

So the next few months are going to be rich with words and ideas and stories from another place, and I know I'll dip back into Diana's head as long as she continues to throw the words out there.

You might want to take a look too http://www.guardian.co.uk/books/diana-athill

that extra cuddle

2010-06-22T01:46:00.000-07:00

I was away at the weekend with my University girlfriends, the 10th time we have had a weekend away together. Once I work out how to put some of my photos from my spangly new camera up here, I'll write some more about remembering how important my friends are. How easy it is in our busy lives to forget that they are there, arms open, and that it's dangerous to isolate yourself as I tend to do.

The boys were a bit unsettled when I came back, despite having had a lovely time with Daddy and Grandparents and all.

Tonight at bedtime however, I got to see a little more of the wobble. We did the usual bedtime routine, with me, as often happens, becoming "mean Mummy" and a bit stern in order to get everyone to calm down. We had our nice stories and cuddles as usual and I went downstairs.

About 5 minutes later J came down the stairs looking heartbroken saying I hadn't lain with him for long enough and that I had with L. Instead of getting impatient as on another more tiring day I might, I gently led him back up the stairs and lay down for a cuddle.

Because I like to talk openly with my kids, especially this big sensitive "wiser than his years" boy, I asked if he'd missed me at the weekend and he nodded and squeezed me tighter. I also asked who he thought got more Mummy time, him or Louis. And for this the thumb popped out and he said immediately and with conviction his brother's name. When I asked him when L got this Mummy time, it took a while to come out but I knew I needed him to feel he could say it. "When you go to the hospital". I said I understood, but that he needed to know that it wasn't fun when we went to the hospital most of the time, although my job was to make it as nice as can be. I said that L got poked and prodded and had to be really patient while we waited around and that we had a nice time, but that it wasn't special. Not that L found it upsetting though, as I gestured to his little brother and we giggled at the fact that as usual he was singing away in a silly voice in his own pre-sleep routine.

I told J I understood how he felt, but that here I was giving him a huge long cuddle because I want him to feel special too. That mummy loves both her boys and tries to share herself, but also that going to the hospital together isn't a choice, it's just part and parcel of his condition. Which is unfair for everyone.

I know I succeeded in letting him be honest and not feel guilty about feeling how he felt, although it hurt my heart a bit for how he wrestled with himself before saying it.

Instead of feeling the burden of how to make sure this sibling of a special brother is ok, I can see that each of my boys needs something different from their Mummy, and I have to work out what that is and listen to my instincts. With L sometimes it comes more easily because he's a child where he's either happy or sad, cross or calm, scared or confident. Also because me and him have our own bubble in how we deal with the hospital and illness stuff and it works and evolves with each visit. With J I have a little boy for whom you have to gently coax up the emotions all the way up from his toes

Tonight all it needed was an extra cuddle, and in the grand scheme of things, that felt really lovely.

Pre-Weekend Thoughts

2010-06-17T01:56:00.000-07:00

It's been an interesting week.

I've been a bit fractious, a bit happy, a bit stressed and a bit calm and right now I feel pretty good.

I'm proud that me and D chose to air grievances and sticky things over dinner and manage to get it all said, discussed and end up giggling by the end of the evening.

I'm glad that on Friday I have chosen to take the day off and wind my way in a relaxed fashion to the 10th Annual Girl's Weekend.

I'm glad that I finally decided to buy myself a digital SLR camera as a present and reward for working hard and trying to be all that I can be.

I'm very grateful for some kindness and wisdom found at work this week. I know how lucky I am to have my job and be able to work as I do while my little man is well enough and "typical" enough to cope without me. I want to embrace this while I can.

I've also been doing lots of deep breathing and trying to look inside myself and limit any damage that the stresses of my life might be causing. I am looking forward to getting better at this.

And I had an amazing session with N where I made a comment that was so visual and clear that I said I wished I could draw it. So out came the paper and chalks and that's just what I did. It felt amazing. I can't wait to talk more next week about whatever it is I drew there.

I have been thinking too this week about my virtual life and my real life and how to marry the two, the differences in them and how I present myself. It comes off the back of comments from one of my 18p- buddies and has really set me thinking.

Many of us feel the same confused gratitude for these strangers online who play such a huge role in our lives. But when the promise of a 3D intervention occurs, like the upcoming conferences, or photographs on facebook and blogs like this that look deeper in, it does take a while to level it all out.

Living a virtual life in place of your own is not healthy. Humans are meant to interact, hug, look, see and love. But for me, here on this blog and more so with the 18p- listserve, I am aware of the boundaries that being on email crosses. Race, class, education, income, culture, geography, religion, politics. On there some of that skims by but none of it matters.
Not one bit.
And that's an amazing thing.

Little Bit Low But Need to Break the Blogging Silence

2010-06-13T14:43:00.000-07:00

it's hard to write when I'm feeling up against it. To spend time putting the negative thoughts and moods into words and making them real.

I've been home alone this week while D was on yet another business trip. I'm tired and kind of feeling ill and anxious and letting all kinds of things get on top of me. I'm trying not to make the casualties of this busy life always be the nice stuff. Watching the swimming lesson, playing with the kids rather than half focussing while doing chores. But also I want to keep doing my job well and make sure I don't let anyone down. It's the same old cry for any working mum I know.

So while I sit here in a bit of a blur, not entirely sure of where my head is or what really the problem is, I am quite sure that I haven't been a very nice or satisfying mummy, or friend, or colleague, or daughter or sister or wife for a few days. I also find that when I feel like this, my virtual life exceeds the expectations and realities of my actual life, and that can't be a good thing...can it?

Which is why I want to say a couple of things.

A "goodbye" to a wonderful old lady called Tilly who welcomed me as if she were my own granny, loved my kids and cared about their happiness, led a long and amazing life and will be sorely missed.

A "phew" that my sister is at home recovering from her operation, and a hope that she clears the infection and gets back to being my happy healthy worry-free big sister again soon

A "thank you" to a friend who tonight sang and entertained a generous group of people in a local methodist church and chose to give the proceedings to the C18 Europe gang.

A "sorry", in fact lots of "sorries". To my boys who've had grumpy mummy strung out a bit more this week than they should. To L who got a bit of frustration from me, partly due to lack of patience with the frequent accidents this weekend, but also as a result of a tough hospital day on Friday catching up on me. To my husband who came in jetlagged tonight, saw me for 10 minutes or so before I ran out to said musical charity evening, and is now snoring in bed with the football blaring. It's nice to have you home, I'm looking forward to a quiet week together.

Some more "thank you's". To my Marble friend, for sharing her excitement and giving me hope, helping me to have something really fulfilling that is rare in how I welcome finding the time to give to it. To my neighbour for cutting the hedge for me and letting my boys clear up all the leaves. It was a gorgeous snatched 45 minutes of neighbourly fun while we waited for my uncle and aunt to pick us up for a lovely dinner at my brother and sis in law's house. To my beautiful blonde friend for the phone call the other night bridging north and south London with a glass of wine and long vent of shared frustrations, for my other gorgeous super stylish friend for drinking and helping to share the stuff that can't be said with just anyone. for my in-laws collectively and a happy meal that cleared my mind and filled my boys' tummies last night. For anyone who's been nice to me that I've forgotten to mention.

A quick medical update - unforgivably lumped at the end here. We were looking again at whether L's spinal curve was progressive, so on Friday went back for an xray and found it looking ok, so another reprieve for half a year or so. But on the back of a good long consultation, I'm now waiting for a neuro-muscular referral to see about the toe-walking, had an ultrasound on a lump on his knee which, surprise surprise, they'd never seen before so could only say was a veinal malformation, but thought it looked fine and we should just keep an eye on it. We have our kidney appointment on 23rd and I'm trying to keep my mind off that until I get there. I am however allowing myself to note down the odd pattern of his wees today (which I know intimately I can tell you!!!!!!!) and which will lead me to do a bit of further searching before I find myself in front of the renal team.

I look forward to a week of feeling calmer and more able to cope.

A Week Full of Progress

2010-06-06T14:01:00.000-07:00

After an overly emotional post last time, here's one full of fun and progress.
This week with a lot of hard work and patience, my lovely little boy has taken his first steps towards toilet training and we are confirmed in phase two, training pants.
We smile when there's an accident, we find lots of ways to cajole him to go every hour without making him want to slap us from nagging exhaustion, and as yet have not resorted to treats or star charts.
As parents of these magic little kids, any progress is good and I guess we develop the attitude that instead of planning and worrying how long this phase will be, however long it is, is however long it takes. So I'm ready to have spare clothes in my bag and a patient smile on my face for 2 years, as long as I get to see his pride at his lovely colourful big boy pants and when he manages to get a result where it should be.
The second bit of progress is a big high five for Daddy and his utter stubbornness on something that I was ready to find ways around. Because of a little low muscle tone it's been really hard for L to pedal, and no matter how much J and all of us tried to get that right leg down, it didn't seem to come. So I started to look at balance bikes and a way of having him off his cute but now babyish looking toy motorbike (kindly lent by special friends). I was all ready to remove the pedals and stabilisers from his big cousin's happy hand me down, on the advice of the bike shop, when Daddy got all quietly male about it and muttered how he was sure we were pretty close.
We had one slightly fractious try the other weekend and a reminder that getting frustrated was so not going to do it.
Then this morning while I mindlessly did some domestic tasks and relaxed in a Sunday morning kind of way (ironing, it seems, is not as devilish and awful as I have always thought!) Daddy and boys played in the garden.
I suddenly got called out by big bro saying I "had to come and see this now" and went to the garden to find L pedalling. With both feet. In a continuous motion.
I was so shocked, and so happy to be shocked, I yelped and heaped praise on them all.
I went to find them all in the park after the ironing and I'd finished my chat with my lovely old friend on the phone, and stood at the gate looking for my brood.
My heart plipped a bit as I saw J speeding around on his bike with his helmet, and peddling furiously behind him, with Daddy stooped over pushing him up the incline, was my super boy.
He proudly showed me how he could pull the brakes too (in fact J was the one who showed me) and shoved my hand away when I tried to give him a gentle push, wanting to do it himself.
Awesome and magical and a joy to write about.
I'm smiling as I type and as soon as I'm done, I'm going to watch the video again that I took on my phone.

3 Years...

2010-06-04T07:12:00.000-07:00

This day, June 4th, is the answer to the question of why this week I can't keep more than one day and a few hours in my head at any time. I keep looking at the diary, trying to engage with what comes next, who I have to think about, what we're doing at the weekend, what work I have to do...yet all I can think about is now...
or more accurately...then,
Because June 4th 2010 is the third anniversary of L's diagnosis.
So bear with me, as I try to think back to then and now and a little of the inbetween.

I remember sitting in that waiting room at the Royal Free Hospital with my little 9 month old rattling wheezing smiling boy, with a calm expression painted on my face. Like a swan, serene outside, paddling furiously underneath, I knew that all I'd suspected for the last 18 months was about to be faced.

My first clue was the woman behind the counter showing recognition when I signed us in.
Now if there's one thing I wasn't used to back then, was anyone remembering who I was and why I was there. I'd spent 9 months of pregnancy repeating myself, 9 months of his little life fighting the label neurotic mother in and out of hospital, repeating myself. So to be recognised and have the imperceptible head tilt and smile from the usually grumpy receptionist, was SO not a good sign.
In fact every doctor or nurse who walked past in those waiting moments seemed to look and smile and rush on through the corridor, noticing us.
Alone in my head I began to feel proud and feisty that I was right, and quite sick about it too. And I became aware of the chant going round and round "please don't let me be right, please don't let this be real"

The kind paediatrician called us in, sat me down and delivered the diagnosis of Monosomy 18p, but then the sting. That it was so rare she couldn't tell me anything about it. That they'd arrange some tests so to watch out for appointments and that we should go to see the geneticists at Great Ormond Street in a few weeks.
A few weeks!!!
A life changing diagnosis and I was supposed to sit still until then. I could barely breathe my way through each second.
So we contacted a private geneticist and went to see him very quickly. He was kind, took blood, wanted to see for himself and told us whatever he could. Eventually we got to our appointment at Great Ormond Street with the very nice geneticist and she talked a little, confessed how little she could tell us, asked if we would let her see L sporadically to keep on top of his progress. And she apologised. Above all she apologised for their having missed finding this during my pregnancy.
And we returned to Dr W, the only medical person we trusted and unbeknown at the time, secured him as shepherd through the first three vital years.
It's all a bit of a blur but some things punch through.

I remember calling my therapist and saying "you know I said I might be back one day...well I think that day is now"
I remember the pain of telling if not the telling itself
I remember the pain of the wrong reactions if not the reactions themselves
I remember the pain of not knowing what my Daddy would have thought.
I remember how exhausted I was by this lonely journey, and the realisation that I now had to shepherd all our families at the start of theirs.
I remember my rage at the denial that 3 years on is still present in some places
I remember sitting at the bottom of the stairs crying and trying not to let J see me
I remember his anger, his rage, soaking up all of our emotions
I remember paying for medical notes, getting them and reading them, contacting lawyers and deciding whether to sue them for the mistakes we found there.
I remember knowing I couldn't do that because that would mean agreeing with the phrase "wrongful birth"
I remember how the rearrangement of my own DNA felt, I still feel it.
I remember all this and yet I remember nothing.
I feel how much has happened in these three years and yet time has no meaning at all.
I miss the comfort of the past, and the naive boundless hope of the future, but I can now embrace the present.
The present as it stands right now. My little man, chuntering away while he sits on the loo, laughing, singing, playing. And his big brother, listening to me talk about the new confusing rash and needing to talk to someone at the suncream manufacturer, and him saying "because nobody knows that our little boy's got 18p deletion"

We are all changed by what was confirmed three years ago. And while the pain is present and sometimes the hope of his good progress feels torturous, with all of that, we still look forward and are thankful for all we have.

Let The Sun Shine

2010-05-28T14:05:00.000-07:00

It's been a funny old week. I've been very worried about my darling sister all the way over in New Zealand having an operation to try and make her better and find out why she's been so poorly for so long. With the 11 hour time difference and the knowledge that I can't be there to scoop up her girls and take her place while she's away it's been horrid. Thankfully she's doing well and we can go back to existing in our own timezones without waiting for news or worrying.
D's granny has also been really poorly for a few weeks. This wonderful 93 year old woman (she of the ward full of old ladies watching boxing)is clinging onto this amazing life she's lead, but tonight while kindling the candles and all of us talking about what we're thinking, J said "I don't want great granny to die". Heartbreaking and sad and it feels like somehow this is our first real test of parenting. A sensitive boy, old enough to know about death from knowledge of my daddy before he was born, and his great aunt when he was still young enough not to get it. But this...this is where we get to hopefully do it all properly.
If you're looking at the title of this post and wondering when the sunshine comes....I'm getting there I promise.
So, with all that going on I just felt very down. By the time I got to Thursday night the arrangement that had been in my diary to see Hair with some old university friends just loomed in front of me. The thought of seeing friends who know me very well and who I love dearly like L, A, K, B and H and a group of other lovelies who only know me back when my life was simple, began to scare me. I sent my friend K an email saying I might not be there, and when she called to be an amazing friend and tell me she was worried about me, I blubbed for a fair while. At my desk. Sorry boss.

So, I worked late, walked down to the theatre and called my other friend L. And with a cheeky drink on our own, I let my friend in and opened up. We shared our insanities, our worries, and she made me promise not to keep isolating myself because she and my other girls need to know when I'm struggling. Instead of thinking they can't understand, perhaps I can let them try.

So, as we sat in the theatre watching Hair, the stage full of delicious semi-clothed and amazingly talented performers, I sang along, grooved, laughed and eventually cried.
When the song "Let the Sun Shine In" started, L grabbed my hand and squeezed, and we sat there like that, with tears coursing down my cheeks, for the entire number.
Then to top it all off (after being spoiled like VIP's all night) we were part of a throng of lucky people who got to join the cast on stage for the final encore of the night. We were singing, dancing, laughing and hugging together.

So I want to thank all my girls for last night and thank so many people for so many things. My fabulous boys for filling my heart to bursting, my families for all they are and all they do, and I promise, when I can...

I will let the sun shine in
xx

The Rhythm of My Week

2010-05-26T05:42:00.000-07:00

Radio on, open the eyes, struggle to see and shrink dreams down to size
Slope out of bed to see my boys, ruffle their heads, clear up the toys
Choose the clothes, nag and dress, nag some more and down the stairs
Breakfast and milk, write notes, pack lunch, quick drink, quick hug, an apple to crunch
Walk through the park, hit pavement and stride, squash on the tube til the end of the ride
Work, smile, frown, think nice, 9 to 5 whizzes by in a trice
Slalom to station and trot my way down, twisting and turning away from the town
Clickety clack, rumbling track, speed to the suburbs as mummy comes back
Walk through the park, grass in my toes, smile at the birds, ease down the road
Kisses and hugs as I come through the door, smiles and soft curls, connecting once more
Check one for mood, the other for changes, respond or relax,whatever the range is
Sit down and cuddle, this weary old mum, the challenge of balance is finding the fun

A little story about camels and straws

2010-05-23T14:17:00.000-07:00

I'm trying to find a way to explain my recent mood swings in a way that doesn't encourage me to spend a post beating myself up. Because although that's something I like to do every now and then, I know enough to be assured that it's not good for me.
So instead I searched my head for a nice parable to illustrate things and make myself feel better at the same time.

It's only natural that every now and then things get a bit too much. Sometime because of hormones (yes, I'll admit it here and it's probably the only place where my long suffering husband will ever see this), sometimes because it's natural to get a bit het up (well it is in my family) and sometimes because I'm just not as good at balancing it all as I want to be.
An email, pressure of performing at work, an ill thought, word or response, another task for the to do lists, a request when I already feel I'm doing enough, another cloak dropped over my feelings through people just not getting it....

The last couple of weeks, I've been really feeling the pressure of wanting to do my best at work and having to run things single handedly at home (and spend proper time with my kids) because of D's business trips away. I already run things by remote control and spend so much time, as many full time working mums, fbending over backwards to keep everyone happy and probably failing all over the place. Not least with regard to myself.
So back to the story. And that camel's spine.
If I were a camel, I'd be in a spinal brace by now, every so often thinking I'm feeling strong and better, equilibrium returned, taking off the support and breathing deep and slow. And then a pesky strand of straw will fall in the wrong place, taking me by surprise, and the crack opens up again.

I've had a lovely weekend, full of sunshine, lots of activities and a fair amount of chilling too. Lovely friends, healthy family (although a strange rash on L that's been preoccupying that part of my brain). D is back, I don't feel too tired and I even started my day with a basket full of ironing and kids TV while the kids ate breakfast. So why at the end of all of that have I just breathed my way out of a quiet but angry tornado. Brought on by reading a few emails, fending off comments like "just don't bother" by D, entering stuff in the family diary, trying not to worry about my big sister and D's granny, and the ever present worry of whether I'm really any good at coping.

Still, positive things to take from this are that in my story, the camel's back is not broken, it's just got a couple of stubborn hairline fractures. And using my knowledge of spinal braces (and I'm hoping that in June I don't get to update my skills on that with our appointment at the hospital to check the progress of L's curve) I am healing each fracture a little at a time.

So, this camel may have the hump (do you see what I did there, even an attempt at humour!) but she's not broken yet.

Oversharing, Undersharing, Somewhere in between

2010-05-20T13:20:00.000-07:00

It's a week since I did a sort of interview with a very nice person talking about my lovely L.
Even though it was part of her coursework, we both took it very seriously, and I seemed to spend most of it being completely, perhaps far too, honest. I felt very comfortable so I just talked, but I didn't edit myself and a couple of hours later started wondering what I actually said. I trust this person so am not concerned about her instincts on how and what to use, I think what I don't trust is me, or my very sieve-like memory when talking about the tough stuff (see, those tunnels again). And yet I haven't called to worry about what was in there, and in fact stand by how we left it, where I said if she wanted to talk more or dig further, I'd be happy to.
And strangely I am.
So since then I've been home alone with D on this business trip and have been the opposite to open, very quiet, very insular, although out and about but keeping it all locked in. I've been having full nights of dreams and waking up exhausted without remembering a thing, which is my true sign of latent stress.
This week I also had an email flurry with a lovely old colleague/friend on facebook and she was utterly generous and kind about having read my blog and taken aback by how I didn't mention any of it when we last email blurted.
So then today I had lunch with a good friend and a kind and generous reader of this blog and listener to my woes. And he said, because he's very wise and a writer so he notices stuff, that it must be weird, him knowing about things that I was referring to in our conversation, not because I've told him, but because I've written about it here.
And it is weird, but it's also what I've signed up to by doing all this.
I am committed to sharing things here, slowly but surely getting new followers and other blogging friends (like my new C18 buddies) reading what I'm writing.
It's not private, but it's sort of still in my control, because in a conversation with a like-minded person it's the stuff I'd probably talk about anyway.
I remember when I was younger my wonderful big cousin A telling me I had to stop telling everyone everything. I think I was around 12 or so and was upset by girls being bitchy.
Since then over the years I've struggled with privacy and people knowing my business, a side-effect of coming from a close knit cultural community in a mid-sized city.
At University I worked out that as long as the original version of my news comes from my mouth, I didn't really mind where it went from there, because you just can't control everything.
I guess blogging is just an extension of that.
Where I draw the line is what I was thinking about doing the other day. I took a photo of a couple of pages of my very private, very beloved journal. Just to look in the cold light of day at how utterly insane these pages were, full of drawings and prayers and words and hopes and dreams and tears.
And I was going to add them to a post until I realised.
This purple wonderful book full of emotions, angry letters never sent, ultrasound photos, torn of bits of paper with words and ideas and dreams hastily written, along with the little pink moleskin pad I carry in my bag, are the only truly private things I have.
The unedited, unpurged, write as you find, it maybe different in a minute, real, visceral and "now/then" Sara.

I think I'll always dip in and out of the Overshare, and will continue to cherish and hide the Undershare.
I realise now however that maybe this blog will hover between the two.
Balancing between and trying to be true to its name...
Somewhere In Between

Displacement Posting

2010-05-18T06:49:00.000-07:00

I'm feeling terribly emotional and frustrated today.

I don't really want to dwell on that in this post (although just to get it out of my system, it's because D is away on the second of three business trips in month and I feel quite lonely, and even though I made him fly early to avoid the ash cloud, I'm sad we missed our anniversary dinner. I'm probably hormonal, I am frustrated at work because it's been a week of banging my head against a wall so far, I'm messing with my head about the looming kidney stuff with fruitless internet searches, and people keep saying nice things to me about this blog and all it entails which until now I guess I didn't really talk about, which brings out all my tears)
HOWEVER
I'm not going to dwell on any of that because I want to talk about old ladies and boxing.

We went to visit the boys' great granny in hospital at the weekend (she's really quite poorly but happy and sweet as ever) and I found it gloriously incongruous that there, on the "old ladies ward" in a sea of grey hair, they were all straining to see the small TV in the corner with a repeat of a very brutal boxing match on it.

D thought that it wasn't at all strange yet I remained mesmerised watching them watching, utterly transfixed.

Old ladies and boxing.

Odd bedfellows but lovely all the same.

Cause and Effect with hidden benefits

2010-05-12T04:30:00.000-07:00

Last night we had a rambunctious bedtime, followed by lots of washing and carpet cleaning and finally a nice quiet story.

You see, when you turn a little boy upside down repeatedly (no matter how many times wifey has asked you not to do that before bed) on the odd occasion in the middle of hysterical laughter will come the cough, then the uh oh cough, and then the oh no! and the follow through
Which explains the washing and the carpet cleaning, not once but twice, because he did a little encore once the initial clear up was done, but this time we were ready.

So...
Cause - rough and tumble play daddy style
Effect - L becomes a paid up member of barf city
Hidden Benefits - confirmation that he still doesn't chew his food properly, due to unrequested close up of dinner during above-mentioned cleanup. Which though gross provides mummy with hands on example of his pharygeal hypotonia for the Statement letter.
Extra Hidden Benefit - teaching J what barf and yak mean and giggling before bedtime

Ah...Happy days!

Journey to Statement - 2.2

2010-05-10T13:49:00.000-07:00

I found the time and head space to do an update email to our keyworker and L's nursery head teacher.
The former came straight back volunteering to do the request for the Ed Psych assessment and drop off the forms. The latter did what she does so well, which is honestly and without pussyfooting, state her thoughts and get things organised.
Today's thought was a little update on his toileting, as the example of this still being the only thing that she and her staff find makes L stand out and seem not quite "typical". He's beginning to be unwilling to be changed, noticing no matter how sensitive the staff, that he's the only one having to be pulled away from fun things to do that.
obviously that makes me feel emotional, because it feeds into my fears on that basis. At a party at the weekend I found myself tucking in his top into his trousers, so that the nappy wouldn't be seen.
I hate that I did that.
I hate that he feels different in any way that isn't in front of me which means I can't help him to make that difference look and feel magic and special.
I also don't know if I'm holding him back on toileting or reluctant to rush because I think we need to carry on at this slow and steady pace. He's doing so well, his body is being trained by our routine and his mind and nerve endings are slowly following suit. I'm so proud of him and I've been reading posts from the C18 lot recently about all of this that make me very very reluctant to rush because he's already exceeding expectations in that forum.
Gosh it's hard sometimes.
I feel so emotional at the moment, trying to turn off my crystal ball that sees all these problems ahead of us and challenges for him before they even present themselves.
I know it all feeds into this journey of the statement. I have to present my views of my child with a calm unemotional head. I have to enjoy hearing that he is seen as typical and able and bright, but balance it with my fear of nursery being for 3 hours a day and school will be all day. I know it's over a year away and a lot can change but I still see things that hurt my heart a bit in the clues they give me.
I have to listen to her opinion because she's seen so many children through those doors, but I also have to listen to what my head has been saying while observing him in his peer group recently. The speech that is great but not moving forward on clarity as I'd like. The behavioural overwhelmed thing he did at home with new kids around at the weekend, and also at a party in a familiar place. The things I thought he knew that he doesn't anymore. Basic stuff that I think is giving me a clue in order for me to pay attention and watch closely.
What's amazing at the moment is the fact that D and I are engaged together on this, and he said something wonderful tonight.
We have to be thankful that we're even having any of these conversations. His great progress. His under the radar status. Just think how lucky we are and how great that is because none of it was assured.
He also said the magic words. We have to move forward now because we can and he is able to. If at any point or with anything we can't, then we'll deal with it then.
I feel so filled up with a pessimism that I hope is just that and not something prescient.
I feel like the minute I think of any of this, I am immediately filled with tears that sit waiting to be allowed to come out.
I need to get a grip.

Looking Out From Inside My Tunnel

2010-05-07T10:00:00.000-07:00

I've been thinking about tunnels today. Which is the best way to describe something that happens to me very rarely, but very acutely when it presents itself, and that has just happened again.

When I go into a tunnel it's my mind and body's way of protecting me from overwhelming emotions. But now that it's happened in a situation that wasn't stressful or hostile, I think it's also when I feel attacked, so instead of getting angry, I become emotional and then shut down.

The first time I was aware of it was back in 2008 when we found ourselves in front of a panel of bureaucrats and doctors at the Royal Free Hospital. I've never written about this because the whole process, although necessary to go through, has always seemed like a betrayal.

Back in my pregnancy we found ourselves being concerning at our 12 week scan and having to have a CVS to see if the nuchal fold measurement was right in looking a bit dodgy. Cutting a long story short, the first result was ok, the second was really really not, so then we had an amnio, then a long wait, then it seemed ok. Fast forward through problematic rest of pregnancy, constantly in and out of hospital from weeks 25 to 39 when I was finally induced. I never saw the same doctor or nurse, had to constantly repeat myself and never saw my named consultant, despite the abnormal start to the pregnancy and the fluid leaking from me for the whole of the last trimester.

Fast forward again after the birth and through a lonely time with a sick baby and everyone thinking I was neurotic all the way to our diagnosis when he was 9 months. We then had to track back and found that a test hadn't been done on the amnio and they had missed it. We then paid to get my medical notes and found that there was paperwork mentioning chromosome 18 and referrals suggested, and none of it had been passed to us.

Fast forward through huge trauma for me at a time when I was on the edge mentally and emotionally with financial pressure building. So we talked to a lawyer. They said we had a case. The case would be built on a wrongful birth. I feel sick just typing that and how wrong it feels and indeed felt back then. Facing an abyss and possible huge medical costs for all the unknowns we had, the least we decided to do was write to the hospital with our complaint and they suggested a round table meeting. I've blocked out most of it, but facing 10 or so people, including my absent consultant, I felt bullied, patronised and not listened to. After getting emotional and clamping down on my tongue to stop it coming out, I felt myself shrink into my chair. Disappearing before their very eyes. The mood in the room changed and I think they saw what was happening to me. I can't remember much more about it, but that was definitely my first entry into the protection tunnel.

The second time it happened was during my appeal for J's school. The subject of the first post on this blog. I had done so much preparation and been so monumentally dismissed by the clerk once in there, that I spoke, got emotional and did that shutting down thing. This time I managed to say more and be more effective and again, the mood in the room changed and I managed to give back some of the crap that I had been given. Again I went into a tunnel afterwards and can't really tell you much more than that about the appeal. In the 24 hours following it, I could barely tell you anything at all.

So that brings me to today. I've had a busy week, nothing out of the ordinary but lots of different things requiring different bits of my brain and all of them full and total concentration. It was a week where work, home, nursery, personal creative things and of course the ever present Statement paperwork that I haven't done, all came in line together.

The day my head got woolliest was yesterday when I finally wrote my to do lists and found myself overwhelmed at the thought of it all. One of the big things I hadn't even added to my list was my role in the kindergarten fundraising event that needs to happen in the summer and that the kindergarten is, most gloriously kindly, sharing its funds with us and the C18 cause.

I've been trying with the other wonderful busy mums who are also not running from this, to find people to join in and even take over so it wasn't all resting on me and us. I must have been biting my tongue for a while in order not to react to the "I'm too busy" comments, or indeed the complete ignoring from people who signed up to help at the start of the year.

I think i just tipped over the edge when at a general meeting, in response to the plans that four of us had no choice but to go ahead and make, there was a cacophony of "no's" and criticisms, with, at first, no offers to help with finding a new way forward. I honestly can't remember what I did or said, but I know it involved a bit of crying and then clamming up. Then everyone spurred on by our formidable head teacher came up with a great solution and another Mum went on to explain the C18 part of it, perhaps to help excuse my emotional reaction. So then I think I talked and cried again and then everyone went home - except for a few happy helpful few who in 10 minutes helped us to plan the replacement event and that was that.

I have spent the rest of the day struggling to be healthy headed. I've managed to read the scripts I needed to, email the writers and edit and rewrite the treatment I've been working on, but it's been a huge struggle.

I even managed to pick up my boys, have a little play, ship them off for a sleepover at wonderful Aunt C's, before sitting down, laptop in hand, work done, house quiet, writing this and letting the fog take over.

Inside my tunnel it's numb and quiet, foggy and dark, but not unpleasant. I'm learning to come out of it quicker and so grateful to my mind and consciousness for allowing me a safe place when all around me becomes a bit too much.

A slightly squiffy memory from a happy Highland break

2010-05-05T14:35:00.000-07:00

This rock caught my eye while sitting in the cold sunshine on the bank of a Scottish river one sunny March weekend. I watched it sit there, dug in, solid, constantly buffeted by the ebb and flow of the tide above and around.

And as I sat there, gently mesmerised (and ever so slightly squiffy) I realised what the root of my fascination was.

That rock reminded me of me. Buffeted but still. Disappearing under the rush of the waves at regular intervals, but emerging generally unscathed. A bit more worn, infinitesimally less solid on its feet...

But there, trying to smile, trying to glisten in the sunshine and stay where it had chosen to settle.

Chromosome 18 Registry and Research Society (Europe) - we need your help

2010-04-29T14:52:00.000-07:00

Imagine living with someone who has something so rare that you have never met anyone else like you
Imagine the joy of finding a group of scientists that are committing themselves and their life's work to your child's condition.
Imagine that child being one of a thousand or so in the world affected
Imagine as a parent finding a virtual world of parents out there who guide and inform you
Imagine being happy for them when each year they make it across the USA and meet at a conference with all the scientists and families

Now imagine a small but formidable European branch of this programme arranging a conference in Scotland at the end of July for those who can't see how they'll ever make it to the US one
And imagine how hard it is to raise money for something so small in a world where there's so much need

Now if you can, imagine giving a little, anything you can, to www.chromosome18eur.org, Chromosome 18 Registry and Research Society (Europe) Charity Number SC040399

Thank you for letting me hijack your imagination and for anything you can do.

Journey to Statement - 2.1 - and the disappearing "u"

2010-04-29T14:34:00.000-07:00

Slight change of plan following a chat at J's school today with the headmaster and inclusion teacher/SENCO.
They are delighted that we're so ahead of ourselves and were kind and generous with their immediate engagement and offers of help. They think that instead of doing a parent request for a statutory assessment, that we should work on what we have already in our locker. Something we have the time and ability to do because we're so ahead of the curve.

So we need to get ourselves an Educational Psychologist assessment and see if our current Kindergarten setting are willing to co-ordinate the Statutory request, adding in their own report, the paediatrician's medical report, our keyworker and whatever the Ed Psych says, alongside our parental letter.

It was a great meeting with this school that I know will be as wonderful for our complicated L as it is for our typical J. I talked, listened, and wrote a few things down on the fat and ominous envelope I trudge around with me in my handbag.

But I'm also quite sad writing this, and seem to be doing quite a good job of half remembering and mainly forgetting some of the stuff that perhaps was a bit upsetting to hear.

The kind of comments that come from my mind and mouth, but that I'm not sure I really believe even though they're part of my patter. Things that secretly I've been saying without huge inner conviction because they kind of break my heart.

"He may not always be this good". "He may stall". "He's a genetic timebomb and I'm just waiting for the bad stuff to start". "He might not always be this lucky"

These are the perils of a parent of a child with a "disability" who's not yet shown how it will really manifest itself.

This lovely experienced SENCO seemed to think that these things I say are actually on the button and probably in our future. We matched speech patterns as polite strangers do, me talking in such an informed and matter of fact way, which allowed her to reply in kind, believing I was all I seemed.

Right now a tear is trickling at the confirmation of my concerns about retention. L has a wonderful brain and learns when you show him, but struggles to discover and possibly has flaws in his longterm memory.

Like recently, he's lost the "u" from his name when I ask him how to spell it.
It's just disappeared.
It's not a big deal, it's not a disaster, but it's a portent of something darker for me and one that again buts up against the tough stuff.

The fact that he needs more than even the "more than normal" stimulation we try to ensure. Perhaps more than I can give working full time and more than a life lived by remote control during the daytime can offer.

It's so hard not to jump too far ahead, but I know I have to help myself by not letting the fear in. By opening my eyes, seeing it and then stopping being frightened, returning to the safe place that is loving him for what he is, what he has and all he can be.

But on his terms

And in his time

Journey To Statement - 2.0

2010-04-28T14:24:00.000-07:00

I have an apology to make to the aforementioned community paediatrician. It's an apology I'm very happy to be making because it means I was wrong and can now add her to the list of medical people who get it and who I can trust.
She goes a bit further because she can see and hear me without me jumping up and down and shouting. Having written a great report from our meeting, and followed up the kidney thing independently, today in a meeting just for me she listened, responded, intuited and without being pressed, offered to be across L's case until he goes to school.
Apologies are also going out to my keyworker, who, after a very long and emotional email from me responding to the Team Around the Child suggestion, stopped me when she saw me in the neighbourhood and we discussed things. She'd been thinking, talking to people and digging, and had come to the conclusion I had which was that I should apply for a statutory assessment and take it from there. She offered that J's school, who we're seeing tomorrow, can talk to her at any time if that would be helpful.

So I now have wonderful practical advice and letter structure from my friend K, a medical report being compiled by the paediatrician, a meeting tomorrow at the school and a keyworker ready to respond to whatever I may need her to do. Alongside, of course, the support and help of L's nursery and head teacher.

So today, is a good day.

Brotherly Love

2010-04-23T12:44:00.000-07:00

Been meaning to learn how to put photos on this site.
This is my first attempt and with two little people very close to my heart.

I was looking back at old photos and was struck by how many of my boys had this gorgeous affection in them, totally natural.

This first is from 2006. I love the smile of my soon to be magic L, secure in the love of an older brother. At this stage, following a really worrying pregnancy, we weren't back in worry land yet and were just enjoying our new baby.

Here it's 2007. Things were clearer, we knew more, in fact we knew less, and we didn't even know how little we knew but one thing very clear was how hard it felt. But these two brothers in their bubble seemed to know and understand everything important.

Taken on Grandma's 70th birthday, back in February 2010. Now we "know" L's genetic disorder. We all know it's name. We all know that he finds some stuff more difficult and sometimes gets a bit ill. But these brothers who share a room, who play and fight and play some more, know that brothers are something to be cherished.
And cherish them we all do.
Every little curl and smile.

The Ghosts of Christmas Future

2010-04-14T03:48:00.000-07:00

I've been remembering a visit we took back in 2007 to the spinal unit at Great Ormond Street. L had been diagnosed with 18p- a few months earlier and we were there as part of the raft of tests to check out what was and wasn't looking problematic.
Having felt the little curve in his spine forever and asked for an appointment to check, we were told he had kyphosis, a c curve in his spine, and that he needed to be fitted for a spinal brace. Besides the respiratory issues and slight delays that had brought us to our diagnosis in the first place, this was the first time we had it confirmed that things were different. The word Deformity was used soon into our appointment and I had to stop the consultant immediately and remind him I was a mum, a human being, and he was telling me something I didn't already know, so please be gentle. To his credit, he was.
So this day, we were back as a family to have L measured for his brace, a very upsetting thing for him and us. In the waiting room D, J, L and I sat playing and thinking and trying to be brave, surrounded by children who all seemed so frightening to us and our apparently "typical" boy at that stage.
I started to talk to a friendly woman who had a boy, about 7 who was quite developmentally delayed and who had a brace on and was in a large buggy/wheelchair. In the course of our chat I mentioned our still raw diagnosis and she said that her son too had a complication with Chromosome 18. She then, with the best of intentions, proceeded to bombard me with information, help, advice, comparisons between our children and a barrage of words and thoughts and emotions that I didn't really know how to compute. And as I talked to her and continued our conversation, trying to take it in, trying to have a small reaction because I knew she meant well, D built a silent brick wall around himself and zoned in on playing with the kids and making her, and himself, disappear.
We had our appointment, L screamed as we stretched him on a rack and kept him still to take the mould, D withdrew further into himself, still in the denial that shrouded him for so long back at the start of this, and I buried all the feelings.
A few days later I went to a weekend with my university girls, something we still do annually and will I hope continue to. I was not myself, I was very stressed and quiet and my friends, bless them, really didn't know what to do as it was all so new. Early on before everyone arrived I think I blurted out how screwed up my head had been from meeting this woman, on that day, with the appointment and everything around it. How even though she'd be mortified to think she did this, she completely took me by surprise and made things a lot worse in my head. And I really didn't think it COULD get worse at that point, lonely as I was, my darling sis having just emigrated to NZ, my local family all hurt, frozen by their denial, my having not worked for so long, the pressure piling up and it all feeling so very very hard.
A few months later I found the Chromosome 18 Registry (http://www.chromosome18.org/) and a whole world of people who lived a life similar to me and who immediately took me to their hearts. I started to post emails, treasure the replies and begin to make the friends and get the advice that has become so important to me.
I used to describe the C18 lot, as I did this woman in the waiting room, as the Ghosts of Christmas Future, who in talking about their lives were showing me things that may be part of mine as L grows and unfurls himself.
But these parents, these wonderful few, enrich my life and make me look at everything I need to see, and it comes forward to the front of my mind when I need to see it.
They are my lifeline and although sometimes overwhelming with the detail of all they go through, something I really couldn't do without.
I've only today told them about this blog, gently emerging as I am into the public with it.
so for any of you who stumble here out of loyalty and/or curiosity, thank you for all you cope with and all you are and for making our journey sweeter and more informed.

Bloggging on the move

2010-04-10T03:33:00.001-07:00

I'm in the car on a sunny day, listening to Joseph, with the boys playing sweetly in the back.
We're making the most of a sunny day off for lunch at friends in Sevenoaks.
Today we have a sneezy rattly and defiant little boy with a constant trace of protein going on. But now I know there's a team at GOS ready to look and test and see if there's anything to worry about, I'm way more relaxed.
So I can enjoy the good stuff:
The sun
The four of us
My kind clever sensitive big boy
The stubborness of my little boy because, hard to parent as it is,he needs those tools in his locker.
The singing from the backseat
The questions from the backseat
And the lovely daddy in the front

Snail slug update - mainly for myself you understand...

2010-04-08T07:12:00.000-07:00

ok, so the snails at last night's garden party I'm guessing are common garden snails and they either lay eggs in dark soily places (like the soil under my bushes next to the path) and or give live birth. I'm guessing either method could explain their presence there last night.
slugs are hermaphrodite it seems, so they don't need the rentals around for them to emerge from the soil where they've been growing, or hatching...
it's not very scientific but it has answered a few questions for me.
and I'm not going back to find out exactly how it works, because the pictures on the websites I've been looking at are altogether too slimy.
I thank you.

Great Ormond Street...oh and snails

2010-04-08T01:42:00.000-07:00

Every so often I like to get a big old dose of perspective on my life, particularly when I'm sliding into that terrible land called self pity. So I watched BBC 1's documentary about the cardiac unit at GOS on i-player yesterday, and leaked tears throughout.
Great Ormond Street is the one place I've found where the respect for parents and children alike, informs every conversation you have with every person there. It's a place where no matter how different your child may look or feel in normal life, they fit in there and indeed, in our case, feel painted with luck and fortune around so much more challenging conditions.
The wonderful Dr Phil Rees was on screen a lot on this programme, showing his compassion and humanity at every point, more than a doctor but all a doctor should be. Seeing the children who were featured, and their families, it's hard not to be incredibly moved and sad that they have to face the kind of thing a parent fears most. But seeing all of these terribly ill children made me appreciate even more the happiness in Dr Rees's face last month when he told me that Louis' heart was clinically normal. That was amazing to hear for me, and I suspect something he relishes as a doctor when so much of what he sees and delivers is painful to all involved.
So watch the show, if you want to open your soul up.

Now, then, a question about snails...possibly inappropriate after the above.
Last night on my path in North London, there was a veritable snail birthing clinic in existence. Mummy snails, Daddy snails, midwives too I suspect, and tiny weeny baby snails all over the place. All perilously close to being squished were I not so sharp sighted and security light so good. But alongside the teeny tiny snails with their teeny tiny shells, were teeny tiny snails without shells, which I assume were slugs.
So question is, do the snails give birth to slugs too? Are snails and slugs related? Are snails surrogates for slugs because there were no adult slugs to be seen? Like anywhere.
I'm very confused.
So I'm off to google it all now and if it's interesting, might report back

Kidneys

2010-04-03T10:30:00.000-07:00

It's always good and bad when I'm proved right.
Having got bored of waiting for Barnet to take me seriously and tell me about the proteinuria samples and all of that, I decided to contact Great Ormond Street myself. On Thursday, finally this double pronged approach to ever getting a kidney referral seemed to converge.
As I was on the phone to Great Ormond Street finding out how I find out when I might get an appointment, Barnet hospital were calling my home to tell me that we weren't going to see me there, but that they needed to send us to Great Ormond Street.
I got home from work to hear about Barnet and then the very nice admin man from renal at GOS called to advise me as I'd requested, so I could tell him about him now seeing two referral letters. He assured me, finally, that we were now in the system and that we didn't need things from Barnet as they'd do all of their own tests there.
I first started looking at this for myself in April 2009.
I first saw a registrar about it in November 2009.
I first got blood and urine tests done on New Year's Eve 2009.
We did two more subsequent urine tests and blood pressure readings, with me only knowing they were high.
I've been trying to get clarity for months.
I've been waiting ever since.

And the community paediatrician who told me we would probably just get bumped back to a registrar, much to my quiet annoyance, is wrong. Just as I knew.
I can't wait to tell her in a few week's time.

Here's to clarity.
Here's to being wrong about what we're looking at and what it'll mean.

Offstage left

2010-04-03T10:22:00.000-07:00

...I'm hearing the sweet sound of Daddy cooking the boys his famous Passover dinner.

As I sit in here, updating the diary, messing around looking at fb and blogs, looking up to watch the birds in the garden every now and then, these have been my favourite comments:

I've never had a fried egg before.
What's vorscht? This? Oh that's my favourite.
Well, if you finish what's on your plate we'll see about dessert.
Shall we share this matzoh L as you're not going to finish it.

Ah.

Lovely Easter Pesach bank holiday weekend

All is well

Stern and Necessary Advice - J to S 1.2

2010-03-31T07:53:00.000-07:00

My very wise and kind 18p- mummy friend K (who lives in the UK and who I really have to meet someday!) has just given me a timely ticking off about not waiting around for people to turn out to either be helpful or not.

She says I need to write to the CEO of the LEA (so many abbreviations in this section of my life!) and request an assessment. So while the keyworker assembles the as-yet-to-be-appointment team, and I wait for my school meeting, I need to write my letter and really get going on it all.

I feel a bit sick but she's right. I mean you're right. So thank you!

One day I'll post about all the fears I have about how it feels to even ask for this process to begin. How I fear I'm really sometimes as much in denial about my little man as the other people I fight so vehemently. How the fact that he is doing so well and being so typical feeds a dangerous part of me. The little tiny piece of me that is still hoping someone will turn around and say "sorry, we were wrong, he's actually fine".

Another day...another post.

Journey to Statement 1.1

2010-03-30T07:57:00.000-07:00

Start with the positives. The best thing that's happened on this early part of the road is the response from J's school. They immediately put in a meeting for me and D to meet the fabulous headmaster and the inclusion teacher to discuss my questions and hopefully give us the benefit of their great experience.

Next I sent a big email to my keyworker putting all my arguments and thoughts about wanting to move along the Statementing road. She took a short while to send a considerate and supportive response thinking the best way was to arrange a Team Around The Child meeting in order to get a Family Service Plan which is broader than an IEP and covers the medical side of things I'm concerned about. She asked some questions and was kind and engaged with what I was suggesting.
When I sent my reply to her I was feeling very frustrated about still not having had a kidney referral, had just found out that his right grommet has fallen out of his ear after the op and that the insurance were threatening not to pay for what they had previously agreed, and still not had a date for the continuation of my meeting with the community paediatrician.

So I kind of ranted...quietly...not at her, but in her direction. I must have sounded like a lunatic, but I expressed my need to have some control about who sits round this table discussing my child and our family.

That phrase "Team Around the Child" got me emotional then and does so now, because the whole point is I don't have a team. I don't have an organisation like autistic and downs families would, to mentor me. I don't even have a local 18p- mum to hold my hand, or give me a ruler against which to measure L's chances.

I do have a GP surgery that administratively works, but a GP that doesn't really know us.
I am being weaned off our respiratory specialist at Great Ormond Street from acting as paediatrician.
I have a lovely regular physio but get pot luck on the day of the other 9 or 10 areas we monitor.
I have a great nursery and all the staff there.
And I have my nice keyworker although that's all a bit unusual too because of her job and him and anyway..

I know that I will find it almost impossible to have anyone around my table on my "team" who isn't singing from the same song sheet.

And I can count safely on one hand the medical professionals who have got it right in the last 4 years (in fact I'll list them - CW the respiratory man, my friend's cousin CL who was amazingly helpful in one phonecall with her advice and care, J the physio, SH and MW the ear lot, AM the neurologist and the nameless paediatric registrar at A&E last December).

It's a really simple tune on my song sheet. First it requires the ability to look at my magic smiling unfazed-by- hospitals boy and say
"wow, he's doing really well"
but here's the tricky part
"despite that big list of things that are medically concerning, and the fact that THERE'S A BIG CHUNK OF CHROMOSOME MISSING IN EVERY CELL IN HIS BODY!!!!"

I almost kissed the A&E registrar last year who decided to keep L in for a night to observe (thank goodness, as even medicated every 2 hours he was still extremely poorly) because, and I quote "I just don't trust someone who hasn't got their full Genome. Things that shouldn't be there are, things that should be often aren't, and you just can't take any chances".

So, how can I fill a table with people like that?

A Journey Into the Land of Statements -

2010-03-21T13:36:00.000-07:00

This is what my blog was really for, charting as a parent of a special kid, the kind of things that when you're in them, you don't want to talk about because they're hard and you don't want to dwell on the negative. And when you're out of them you want to forget because they were hard, exhausting and you don't want to dwell on the negative.
However I think it's really important that this stuff is here to be read, to advise and support other people going through it, and to help me to see how much we achieve when it all feels too difficult, as it inevitably will be in what I think will be a long road to an as yet uncertain result.
So, my little boy with his genetic disorder. My little boy who does so well but who may have that held against him. My ability and indeed determination to look ahead to when he starts school in September 2011 and whether/how/if we can or should get a statement of special needs.
So begins the journey.
Come along for the ride, I may need some cheerleaders

when to stop talking

2010-03-17T03:33:00.000-07:00

I went to an industry "do" last night for the first time in years.
It was kind of fun to get dressed up and be glam Sara and it was actually wonderful to see old friends from places that I used to work.

(Just to meandre for a second, I've bumped into people recently who I haven't seen for a while all of whom have been telling me with great shock and wonder how much weight I've lost. I got lots more comments like that last night too. As an exercise challenged person who hates dieting or weighing herself, or indeed looking in the mirror very much, I suppose I have to take their word for it. However, rather than take the compliment, I'm thinking that clearly I used to be a huge fat knacker, or that people just have an image in their heads of me as a short fat person. I add the short because people are often surprised at my height and one super lovely friend last week was quite shocked at how tall (or not short) I was after a gap of a year or so since we met.)

Anyway, at said "do", the very last conversation I had was with a lovely producer who'd clearly had a very bad day. He proceeded to rant quite animatedly at me using many unbloggable words to describe the TV head honchos who'd just turned down his amazing project. Feeling bad that he was letting these people make him so angry, I in turn spouted positive pointless platitudes to try and disperse the bile, but only really served to annoy him. I then did something I don't usually do, which was to cite my little magic man in my attempt to give him some perspective on the general bullshit of TV and how it's really not worth it.

It didn't work, in fact as we both laughed, trapped in this crazy funny and intense exchange, he ended by saying he wanted to dig a hole and put me in it.
I've never had that said to me before and although I should have been offended, I actually found it quite funny.
So on my way to work I was thinking about writing this post and deciding that I really need to learn when to stop talking, (like I should have to the poor taxi driver on the way home who practically heard my life story from Park Lane to Finchley).

However I've just had call from the nice producer, who'd felt so bad about his rant on waking this morning, that he found my mobile number so he could apologise for being so very grumpy and taking a joke too far.

So maybe there is room for a cock-eyed optimist in a room full of TV cocks.
But I do need to learn to shush a bit too.
And really, I must dig out some photos to see if they're right and I was as fat as they all remember

Deceptively simple means often not simple at all

2010-03-16T03:50:00.000-07:00

I had really been enjoying the apparent simplicity of L's latest operation.

The replacement grommets and full removal of remaining adenoids went just as it would for a typical child, which meant I could relax and let go of my anxiety about things being as complicated as first time round.
So yesterday we went to see our wonderful surgeon for the follow up (with tingling bells about L saying the right ear was scratchy) only to find that the bleeding from said right ear the day after his op, that I was concerned about but took as normal, might well have been the grommet deciding to evacuate.
Dr W couldn't see it due to dried blood and was a little worried, so we now go into another week of drops, another look next Monday, which means another few hours of planning logistics and how to get him there/take him home/do my job, and if the grommet has gone, thoughts about another op.
I try to be all positive and it isn't a big deal in the grand scheme of things, but it would be really nice to have something go super smoothly all the way through.

I'll write down all the things that are helping me to smile this week just to stop me getting all moody:

Matrimonial harmony resumed and D's excitement about our upcoming weekend away is infectious.
Not yet feeling sick about leaving my babies behind for said weekend, helped by their wonderful Aunt C looking forward to having them for the first time.
Three days and counting of blue skies and frosty sunshine makes me feel like we're on the borders of Spring.
Memories of a wonderful family-filled mother's day where my both kids but especially big boy was so kind and sweet my heart popped a little

Finally, something lightened in my head so that I'm able to smile and laugh and move on from the dark thoughts when they threaten.

more observations on my strange

2010-03-12T02:14:00.000-08:00

For the last two years I've been walking to work from Tottenham Court Road station. The final leg of the journey takes me down a little road where there's a Starbucks on the corner, and at what I now realise is the back door of that Starbucks they have a very rigorous cleaning regime that coincides with my walking past at around 845am.
Every day I walk along the pavement of Hollen Street and step into the road to avoid the very pungent bleach and water mix that collects outside the gate of that back entrance, and slowly dribbles its way to collect on the pavement outside.
Every day I sidestep that dettolly-smelling mix, and only this week have I started to wonder why I won't walk through it.
And I think I've found this reason,.
Call it my youth group background, or just my general education as a girl aware of her heritage, but I'm just not comfortable walking through disinfectant.

I have often thought over the years about the "what ifs".
What if my great grandfather Harris had not come over from Eastern Galicia and found his way to Liverpool and then Manchester. Or what if my great great grandfather on my father's side had not found his way to London. What if I had been born then rather than now?
I might not have had any choice but to walk through that disinfectant and through to my destiny.
So each morning in sleepy Soho I do have a choice
And without me being aware of it, I've been exercising that choice everyday.
Because I can

down low

2010-03-05T13:53:00.000-08:00

Still a bit lame at all this blogging stuff. I don't do it often enough, not that I have any followers so it's not really like I'm disappointing anyone. Still, I've decided to do it so I should try to stick at it.

I could be kind to myself and say it's because I have a full time job, do all the home stuff, have two kids and have at least one extra curricular appointment for the little one in between all the other stuff like trying to see friends, do exercise, relax, see husband, stare into space just a little....

I need some idea about posting etiquette. Or maybe I need a crystal ball to know where all of these words and thoughts and feelings will end up and how and/or if and/or when they may come back to bite me on the arse.

Like if I posted about how uneven the sharing of things are in my house these last few weeks that makes me feel so frustrated and used that I could actually burst.

Like if I posted about how I am struggling daily (sometimes hourly and minutely) to keep optimism and positive attitude towards my career.

Like if I splurted all the stuff that makes me frown in my down time.

Tonight I feel low. We had a little revisit to L's adenoids and grommets this week and I was very nervous about it, having had such troubles first time round back in November 2008. It went really smoothly, just like it would with a typical boy, and he's enjoying his quarantine just hanging out with his nanny and me a bit and having the toys to himself. I've been able to take big boy to school three times this week and it's been almost too gorgeous a start to my day. We've even had a paediatric assessment with a big pass from the nice doctor and a glimmer of hope that I might get closer to having someone across all the unanswered medical stuff.

But ask me when I last had a non-tense conversation with D, I couldn't tell you. Ask me when he last pulled his head out of his own stress to look around and think "hmm, what can I do for anyone else round here right now?" and I couldn't tell you.
Ask me why he's down there typing, and I'm up here and never the twain is meeting.
And I couldn't be bothered to tell you.

Sometimes, rightly or wrongly, it all just feels too hard.

one in one out

2010-02-11T13:21:00.000-08:00

We've been hospital-tastic in the last few weeks (as well as home alone during husband's 10 day business trip) and have new things in and new things out.
Strictly it's two in two out but that doesn't sound as good.
Speech therapy out - he's doing so well we really don't need to be there, never really did actually but because 99% of the kids with 18p- have issues I didn't want to leave it to chance.
Heart out - the pinhole that was found in Nov 08 has gone and the heart is gloriously clinically and physically normal. We don't have a reason for his getting blue lips and cold extremities, but still, a good result is a good result.
Hearing back in - today his hearing test showed a horribly blocked right grommet that needs either cleaning or replacing. So that's an operation, small and insignificant for some kids but because of airway concerns and low muscle tone, not so for him. We're rushing it through before the health insurance runs out (don't get me started!)
Most upsettingly
Kidneys in - I've been monitoring this for sometime since my witchy senses started tingling and I bought some dipstix. We've now had two lots of urine tested, one lot of blood tests and need to deliver more of the former to the hospital and wait for an outpatient appointment with a new paediatrician with knowledge of renal things.
Both D and I feel pretty crappy about this one, like it's not just going to go away like some of the other stuff. I'm in denial about what it could be, pushing it to the back of my mind and resisting too much research until we know more.
Accentuate the positive and all that.
wow, a pretty downbeat post. I've been quiet for so long because this is actually more positive than I've been able to be for sometime.
It'll take me a lot more practice at this to be able to be totally honest as I feel the things I feel.

Health Insurance Sucks...

2010-02-11T13:19:00.000-08:00

...
that really is the truth
the paperwork and bullshit
makes me kind of hit the roof
it really is a travesty
that we're so trapped in fear
so I'm trying not to play along
let's have a huge "hear hear"

Oddity Exposure #1 - Clockwise

2010-01-14T13:06:00.000-08:00

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

Gender stereotypes in play

2010-01-07T10:39:00.000-08:00

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.

snow day January 6th 2010

2010-01-06T12:59:00.001-08:00

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

Exclusions

2010-01-06T12:46:00.000-08:00

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.

November December

2009-12-27T12:26:00.000-08:00

Here's what's been going on with the little man:
The govt has decided he(and other little kids) can't have the second half of the swine flu vaccine but they can't guarantee that half a dose is sufficient
Husband has left job with best health insurance policy in the world so we've got the clock ticking on getting the cardio consultation etc in the diary and I have to work out how we do all we have to do without sneaking out to the private sector every now and then to help move things along.
He's still intermittently blue and we've got renal tests in the pipeline, but on the whole he's fabulous, talking, learning, running around and being gorgeous
Here's what's been going on with the big little one:
he's loved his first term at Reception and is trying to work out who he is and how naughty feels every now and then.
He and his classmates are testing the wonderful Moss Hall Infant School with their presence, simply by having been forced on them. But the school are amazing, the relief of the parents in our class is palpable and as a result I've named us "the gratefuls", because we really are!
He's also pretty obsessed with death and dying and questions about that. D wondered if I talked too openly about my late Daddy and the great aunt who popped off last year. I think he's just a sensitive inquisitive perfectly normal little 5 year old.
Here's what's been going on with the big man:
He's finally left the safe job. The job that helped us begin to dig ourselves out of the hole that the most expensive year of our lives, followed by the life changing diagnosis of our magic man, helped us fall into.
He is, I believe, about to finally achieve his potential, something that I have always known is out there for him to take.
He asked me why I was alright about this, obviously thinking back a few years to other job and house and money related conversations around the kitchen table. I don't know why, but everything feels back on the right path. Like we've been down and fighting for so long that I'm no longer scared of whether and how we'll cope. And secretly, I feel a bit optimistic that we might be on our way into a nice new phase for our family.
Here's what's been going on with me:
I had an amazing trip to New York, booked to my complete surprise by hubby. I shared my time between the lives of my darling friends C and N and was spoiled rotten. Most importantly, I lived according what I wanted to do for a whole 4 days, not what was needed of me. I floated through the time change and the space and it was just what I needed, without even knowing I needed it.
I'm mulling subconsciously on the new kids stories for our Marble Books and beginning to flex my literary muscles again.
And I'm at home coming to the end of the first of my two weeks off for Crimble.

I am loving being with my kids, loving seeing my D, loving not being ruled by obligation, loving cooking, hanging out in the mornings not in a rush, recharging, cuddling, playing, drawing...and I'm very very thankful for this time indeed.

Swine Flu Vaccine for L part one

2009-11-26T06:50:00.000-08:00

We did it, we got it, he was very very brave and thankfully showed no adverse side effects besides a bit of raspy breathing and extreme tiredness. He's not really looking very well in general right now but we're carrying on as normal and will do the booster shot in 4 weeks time.
Two days before the vaccine I had a horrible reminder of how nights with L used to be, before we cleared the obstruction in his airway and got our lives back.
He took a bad turn during dinner, had a temperature, was so upset after he went to bed and because of the cold he had his breathing was terrible.
In the wee small hours of the morning I lay with my little boy, trying to work out what to do and listening to him labouring to breathe once more. Each breath took such effort and the memory of that movement and noise made me realise it was a year almost to the day since his operation.
I wondered then as I have a few times recently, how any of us managed to cope with all that stress and confusion of knowing that our baby wasn't breathing and we couldn't do anything to help.
It's testament to his strength that he thrived at all for the 6 months that those tonsils and adenoids hid and did their damage. And it's testament to mine that I got through those nights and continued to face all the scary results that we got along the way, until we found the actual cause.
So Sunday 12am, there I stood with a bag packed for us both, really trying to retread those neural pathways of how to be emergency mum, having forgotten when I needed to press the alarm that would take us to hospital.
I finally agreed with hubby that perhaps the safest thing to do was stay here and watch him closely rather than take a trip we weren't sure we needed and expose him to unnecessary hospital germs.
So the next morning after no sleep I was glad to see Louis looking brighter, and proud to see that we'd coped with it at home.
Has it really been such a great year as to not have had to use that skill for so long?
For that, and for every sweet and unobstructed breath he takes, I am forever thankful.

By George, I think she's got it!

2009-11-05T14:17:00.000-08:00

very middle class comment alert....
while in therapy last night (see?) I realised as I gently ranted about all the stress that has been happening (waiting for 8 weeks for test results for my little boy for some horrid disorder, finally got them, all negative but the problems remain), work stress, blah blah
I realised that I am not feeling as bi-polar as I was, all wooo things are great, or eeeeuuuuugggh, things are awful.
I was just sitting there, talking calmly, looking at my emotions, feeling what I was feeling, but wasn't numb, wasn't angry, wasn't elated, wasn't crying...was....SOMEWHERE IN BETWEEN

Thumb ridges and other stories

2009-09-02T05:53:00.000-07:00

today on the tube I found myself idly tracing the line of my right thumbnail. Waking out of my lethargy, I realised that the deep ridge that I became aware of in July, had finally reached the tip and was one emery swipe from oblivion.
odd way to start I know, but stay with me...

So I've been thinking recently about the physical side effects of stress. How the body responds to the adrenaline rush of stress, you know, fight or flight and all that...
In cases of long term stress (horrid stuff like bomb or rape victims and those with PTSD, or even parents of kids with disabilities) that rush of coping adrenaline doesn't get to go back to the resting calm state because the "threat" is constant.
So where does all that adrenaline go and what does it do to your body? your heart, your lungs, your skin, nails, all without you knowing? What long term physical effects are storing up in my cells right now.
You see I'm pretty good at making sure the kids and hubby get their 5 a day, eat a balanced diet, get exercise, but I have to really push to remember I need to do that too.
Which leads me back to the tube today and that thumbnail.
I drew a pretty picture in my pretty pink notebook back in July 10th. It was of my thumbnail in profile and it showed a ridge about 3/4 of the way down, a deep, marked "what happened there?" kind of ridge.
Charting it back I calculated that this "body to thumb assault" happened back in April, just as the postman delivered my letter about Jacob's invisible school place. Now here we are at the start of September and the ridge has run out of nail as we prepare for him to start school in just a few weeks. In fact, you'd never know it was there.

When I went into therapy over 2 years ago, I labelled myself as searching for long term coping mechanisms for this lovely life I'm blessed to be challenged by. Last night as I came back to this safe place after the summer break, I realised that was a crock of shit.
2 years on and I still haven't looked at the long term, partly because I get frozen in a panic of coping due to the fullness of my day to day.

What's been going on in my body, my heart, since the "life" in my life happened back in Summer 2003 with the diagnosis of my mum's cancer and everything since.

So I'm making a short, quiet promise to myself to try and look closely at changes I need to make to my life. Because if all the pressure and upset I had over those last 5 months due to school could do that to my nail, what else might be lurking inside from the last 6 years?

Patience

2009-08-25T13:45:00.000-07:00

I seem to be undoing all my hard work these last few weeks
So long patience.
Sayonara to not worrying about things that haven't happened yet.
When was the last time I breathed properly, or found some time for me, or sat on the couch, nicely out of focus, relaxing and clearing my mind?
Looks like I'm back to overwhelmed.
Back to focusing on all I have to do and having no time for anything else outside of that.
I'm sure I'm listening as I talk to people. I know I heard every word that my darling sis said on the phone at the weekend but can I recall a word of it now? Not really, well at least, not the nice words...there's a shadow of the scary "I'm worried about you" ones but I don't really want to look at those.
New childcare arriving in the country tomorrow.
Been writing a dossier on how to run my life for me at home while I'm at work running everyone else's. Work is my sanity but also my undoing, because it takes me away from my babies (I know they're not babies, but I can't help talking about them in that way when I express my longing to be with them more)
I do know that working is right for now, and is necessary, and I'm good at it. The kindness of employers makes me grateful, and I get to do all the hospital stuff I need and I know what it's done for my confidence to be back doing what I did for so long and so successfully.
But I also know that I can't go on like this forever.
Start planning now for the day when I come off red alert and might want to think about what other options I have out there.
Aren't blogs funny? writing and writing into the ether...noone reading it and once I get over the slight humiliation that comes from the act of writing, and consider the fact that I'm not doing it for anyone but me, it almost feels enjoyable.
but it's still odd. writing into a void and... actually, the humiliated fear feeling I get each time is that maybe someone is reading it and I'll be rumbled.
rumbled for what I don't know.

Underlying Health Issues

2009-08-05T07:59:00.000-07:00

Underlying Health Issues.
Three words that you read as the excuse for all the recent swine flu deaths.
I see these words everywhere, in all the stats and all the news stories and the macabre mummy in me wants full details of what they mean.
So far I've guesses at tonsilitis, some kind of lung thing and probably lots of colds that happened to be raped and pillaged and mutated by H1N1.
You see I'm so used to interrogating every medical aspect of my little man's life, I'm thinking of studying medicine so I never have to rely on a doctor's opinion at all. So when I read something like this, something that could easily be the difference between getting over a case of swine flu (which did I mention is just one away from us at work, in the family, at nursery...) I need to know more
I need to pry and have details because my house is full of underlying health issues, complicating the ordinary run of our lives and meaning I have be as observant as I am.
So when does an underlying health issue become an overarching excuse for tragedy and illness?
Is there more I can do than ruthlessly medicating to get rid of the horrid ear infection in one boy, and checking the temperature and watching and listening for the slightest physical sign of change in them both.
yet there's a rattle in my chest and a cold that won't go away that I'm seemingly in denial about.
does that count as Underlying?
can my underlying infect them and turn into theirs?
it's all so confusing and I fear I've finally tipped into neuroticism?
how do I avoid us being part of those headlines?
how do I get them to take my vulnerable little boy seriously?
and will we get to go on holiday on Sunday?

ooh, some good news...

2009-07-08T07:03:00.001-07:00

I've been worrying and fretting quietly to myself about whether I can handle this school appeal tomorrow and it's been a genuine concern about what it would do to my sanity.
I now find myself in the unfamiliar situation of feeling happy and calm. That's because I just had a call from admissions telling me that we don't need to come to the appeal, because the school had agreed to take on more children and therefore Jacob has a place. The nice woman on the phone probably hadn't been prepared for the gushing and thanks and general outpouring she got from me.
I want to know how it's possible and what we need to do but also, suspicious me wants to wait for the letter so I know it's not a big joke.
So, this not a post blarting on about how screwed up the appeals process is and how cruel the bureaucrats within it are.
This is a post to say I'm smiling, I don't feel sick and I think I can begin to plan a workable way to look after my kids, work full time and get back to the business of everyday life.
hooray.

Somewhere In Between

2009-07-06T09:10:00.000-07:00

So often I find myself overwhelmed, then I pull it together and slip back into underwhelmed.
I am very excited to know how it feels to be somewhere in between.
Middlewhelmed. Midwhelmed?
sounds a bit rubbish...maybe once I coin a linguistically acceptable phrase for it, I'll be on my way there.
any suggestions welcome.

School Appeals Part One - Friday 3rd June

2009-07-06T09:06:00.000-07:00

So, fighting for L is part of me and I’m getting better at it. What has totally thrown me in the last few months is that no sooner did I find help and a way forward, than the other simple stuff decided to misbehave.
We moved to Finchley over 3 years ago, pinpointing schools, buying a house in walking distance from them, and confidently refining our choices to cover whoever Louis will be when the time comes.
A sunny May day was the last known sighting of my inner composure, when we received a letter to say that J had not been offered a place at any local school for September. Not a place at a bad school, not a place at a good faraway school, but a place nowhere.
All around us as it is so easily and punishingly compelling to note, friends and neighbours with easy simple lives and easy simple children, got into the schools and got those places while we entered a vacuum.
We fought, we emailed, we called, I sobbed and we prepared with reluctance our appeal while meanwhile we stamped so loud and so high that they nervously found us a place in a “local” school. A school with no tube station to allow us full time working parents to do drop off at. A school that’s trying to turn itself round, and will probably do so quite soon, but that I'm not yet sure I trust will know what to do with my L.
We physically don’t know how to get there or work it into our (10 specialists covering our little one’s) lives. We have lost our support network of friends, all of whom are going to the schools we wanted. We have a child with so rare a disorder that he’s the only one on Great Ormond Street’s books like him and yet, so we were told today and have been from the start of the process…cannot be considered under exceptional circumstances.
Because apparently we’re not exceptional.
Apparently my boys are not special.
Apparently having a sibling with a rare disorder doesn’t mark that sibling out.
That sharing a room with that brother and snapping his head round to evaluate the cough just as I do on a chesty day, and knowing whether we need to get the meds, is just the same behaviour as any other four year old boy.
We don’t stand a cat’s chance in hell of proving that a reasonable admissions board should have taken this all into account. The 23 pages of information, documentation, L’s catalogue of specialists, the impact of this life on J. The chunks that each page took out of me as I dutifully put down on paper what we do every day as full time working parents and then tried not to be overwhelmed by how big it all is.
To sit for two hours, and then enter a room, and no sooner had we sat down, be told in no uncertain terms that we couldn’t win, they were sorry and all, but don’t bother. And yet there we were, bothering, because it was our legal right to do so.
Four hours on and I still feel in the little tunnel I entered to stop the panic attack and being overwhelmed by tears. I can’t remember a word I said, I can’t remember why we started it, and we have to do the same thing all over again for the next school next week.
So I want to know, even though of course we are blessed and things could be so much worse, when I might get to come off red alert for just a short period to re-sole my fighting shoes.

Where it all began

2009-07-06T09:05:00.000-07:00

I started blogging two years ago when my littlest boy L was diagnosed with a rare genetic disorder called 18p deletion. The emotion, stress and pressures of our lives at the time sent that blog account spinning towards the recycling bin soon after.
Today, Friday June 3rd 2009, fresh from the first upsetting and draining school appeal for my J (that I’ve just attended and lost) I am back, wanting and needing to howl at the (virtual) moon.
I’ve lived a lot of life in the past five years with deaths and illnesses and the life-changing news about my little L and his magic DNA. To spend 9 months of pregnancy, ill, scared and knowing something was wrong with my baby only to be treated like a neurotic hormonal woman. To spend a further 9 months rushing that child in and out of hospital laid flat by simple colds, breathing so loud you could hear him in the other room, missing milestones and silently imploring me to keep banging until someone heard. Clarity came with the grey haired wisdom of the paediatrician who listened, checked and finally found what I always knew had been there. To spend the next two years acting counter-intuitively as a loving mother by continually telling people that he wasn’t normal, that he isn’t perfect, and having to self diagnose his now numerous medical, neurological and behavioural disorders.
Two years on and I realise my DNA changed at the beginning of this journey that with tears in my eyes I’ve just read back to myself. But because of the magic and wonder, curls and smiles of my glorious boy, those ripples haven’t started moving out yet. Life is just the same for everyone around us. One family and their reluctant inability to get it. The other that gets it but is too far or busy to be part of the support network. The medical world and the lack of facts that they like to find comfort in. The authorities who hide under paperwork and red tape, hoping you won’t find all that they could be doing for you. There’s no box to put L in, or support group to help shout and bang my drum and having banged and crashed and seen with such clarity for so long alone, I find it almost impossible to ask for help, even when it presents itself.
My battles are just beginning and I am made whole by knowing that this is my job and that I wouldn’t trust anyone else with it. And nor would he. I feel his pain and am surgically attached to him when communication or his high pain threshold means that he can’t recognise if something bad is going on. So two years on and life is no less confusing or lonely, except for the small and globally scattered handful of 18p- parents that I found, was overwhelmingly welcomed by and despite them feeling like the ghost of Christmas future, could not now do without.