Monday, lovely Monday

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

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.  

1. In most public places, if I need to use the facilities I have to go either down or up numerous stairs.  
2. Any walking I do has my eye fearfully trained on the pavement because of the uneven flagstones and potholes.
3. 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).
4. 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

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...

...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

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

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

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

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

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-

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

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

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

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...

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...

...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

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

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

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

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

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

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

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

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!