There but by the grace of...

I need to say, I am a rubbish blogger, I wait too long between posts, I make promises about writing more regularly than I do, I hide away in my head rather than come here often enough.  For that I apologise and thank you for popping in on me every now and then to see if I'm still here.

When I do post it is because I have no choice, I need to come and share, either the fun and silly or the deep and darkish.  Tonight it's a little more of the latter...

I've been battling with myself quite a lot in the last couple of months - about stress, work, diet, home life, weight, age, height, you name it - and there are various reasons for this.

Firstly I am about to run head first into a milestone birthday, the dreaded "big four oh", which will come slamming into my life a week on Saturday.  I'm fine about it, and all, in that "am I really, stop being ridiculous!?" kind of way, but dead dads and complicated kids and wobbly bellies do come and spoil the party in my head quite often.  On the whole though, how lucky I am to be approaching middle age healthy and with two wonderful kids, a lovely husband, a job, a house, a generally positive attitude and some lovely creative projects that keep me hopeful and excited and fulfilled.

Secondly I've just had the 5 year anniversary of my gorgeous little man's first and still most palpable diagnosis.  The one where my DNA shifted into a new place and my life altered for good.  The difference with June 4th this year is that I've been doing a lot of talking and thinking about when it happened, what's gone on in between and looking at our life as a family.  This is because I have been lucky enough to connect with three lovely "special" mums, who at first were coming to me because I could help them to talk and not feel alone.  But by chatting about their gorgeous complicated kids, and about how happy I am to be helping and talking to them, my own aching hidden away loneliness has been brought out of hiding.  In finding through them three new kindred spirits, one of whom I knew at University when life was so easy, I now feel again how alone I've been.  How despite my virtual Chromosome 18 family, nobody in my real life knew what it was like to have an atypical family.  It's amazing to have company, although i wouldn't wish it on any of us, so Rachel, Jules and Natalie, thanks.  I didn't know I needed to talk but I'm glad I have.

Which brings me to the title of this post and the link below.  I am finally able to look back at how far we've all come, from this lovely seat here in "officially off red alert for now" land.  I have a five year old boy who has exceeded every expectation I was hoping we could have of him.  We live a fairly typical life, and if you don't count the stuff in my head and heart, are just like most of our friends.  My boy walks, talks, writes, counts, reads, plays, loves, laughs, performs, expresses himself...he is a million times more than anyone hoped or predicted and full of even more untapped potential.

It didn't look like it would be like this and we may not always have this luck, but I am finally in a place where I truly appreciate it.

In homage to how far we've come and how lucky we are, I want to talk about the man you will see if you click on the link here because that's why I'm writing this post.  Browsing iplayer for a drama I needed to catch up on, I saw this clip for  Great Ormond Street ,a BBC show about the wonderful hospital that we thankfully don't see too much of nowadays.  This man here is the white haired saviour who was the first to listen, care, dig deep and then support us through the horrible days of our very sick baby. 

There but by the grace of whoever you believe in, we only know a bit about sleep studies and low sats and blue lips and slumps and operations and worry and it was all a long time ago.

There but by the fortune and love and luck we have, life is sweet and I am glad to be able to see it from a calm and safe chair.

If the last decade is anything to go by, 40 will be a piece of cake, and I am looking forward to finding that out.

Lights, Camera, Action

I took this photo last week, on Thursday 23rd at 5:55pm to be precise, to mark a turning point in the year.

Now as you can see, this is no great shakes as a photo, but for me a big deal because this was the moment that it was light enough for me to walk back through the park on my way home, rather than go the long way round through the streets.
Memories of earlier blogs come flooding back, composed in my head as I wandered, poems like The Rhythm of My Week .  I am visited by memories of the former years, walking home on the back of a rough day, twiddling my fingers, arms hung by my side, imagining all the stress flying out from my fingertips and settling benignly on the grass behind me.

As a Mancunian with already frizzy hair, I don't mind winter, or rain, or cold - as Billy Connolly says it's all just weather.  But my body and soul do seem to respond to the light and I feel stronger and more free as I march home after a day in the office.

So on this leap year day, February 29th, this bonus extra day in 2012, where I've kind of done nothing that impressive with my extra 24 hours, I am thankful for the small things and hopeful for a Spring full of creativity, happiness, friendship, love and success.

It was light, I had camera, I will take action.

Cancelling to Gain

I was so happy to read Daisy Waugh's column in the Sunday Times Magazine this week that she's inspired to write on the same theme (albeit in a much less funny way).

A few months ago I finally got my hubby to cancel mine and the kids gym membership with the, some might say ironic, intention to try to get fit again. 

Joining seemed like a great idea at the time and for the man of the house it still is, but increasingly I knew that my membership was causing an opposite reaction to the one it should have.  I was doing exponentially less exercise and feeling bad about it, so both physically and emotionally it was giving me whatever the opposite of endorphins are.

I sit here today delighted to be nearly free of my contract.  Ridiculously so.
I mean let's ignore the expensively terrible dark brooding refit of the club.  The memory of the burnt-orange-hued staff member who marched up to me and my sons in the ladies changing room, pointedly telling me that the family room was next door; as if I'd deliberately sneaked an adolescent in to scare all the little girls, rather than been a mum on her own with her very tall young boys. The kids' membership that seemed to be a very expensive way to have my youngest play on the computer.  The extra cost tennis lessons for the oldest to play bad tennis with bored kids, hit a ball once or twice with a coach, and then constantly transmit their message that he really should join the Saturday group too.  Let's even ignore the fact that we only use the outdoor pool once a year when the sun deigns to shine on a Saturday and we are free to enjoy it.

The real reason I decided to cancel is because I absolutely know I will be better off without it and the kids won't care at all.  With three weeks more to go and the pleading letters from the membership team coming in thick and fast, I no longer have the guilt of not getting my money's worth and am excited to have freed up that cost. 

So when someone says they go to a great zumba/yoga class in a nearby church hall, I can go along and see if I like it.  Hell I am even jogging around my park every now and then without each footstep saying "you should be on the treadmill...what about some body attack".  I have upped the extra-curricular sporting activity for my boys and they love it.  We are going to play tennis in the park for the next two weeks that the sport class isn't on.  I am actually looking forward to jogging tomorrow and Sunday and the shallow benefit is that in the park and on the street, despite knowing so many people locally, I won't worry about what to wear.

On the back of a foot that's finally healing 6 months after I broke it, the feeling of weakness that I really want to overcome and the creeping big four oh that's on its way, I am looking to heralding a quiet new phase.  One where I pay attention to my body, feel the aches and pains, see the wrinkles and folds, accept who I am and how I'm wired and that I alone know how to make real changes and how, at whatever speed, I can work them into my life.

The proudest moment I had in my time at that place was refusing to have them weigh me at my induction.  I said then and I believe now that I don't weigh myself at home, I'm not motivated by that number going up or down and all I want to do is be fit and healthy according to me, not those around me. 

One less thing to feel guilty about can only be a good thing.  To those who love the gym I say all power to you.  For those who feel like me, hope to see you jogging slowly around Finchley with a smile on my face sometime soon.

Break Yourself Better

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

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.