Step into my shoes

Hi!

I think I’ll just do a quick post today.

Hahahahahahahahahahahahahhaha

Ha!

OK, so, given my track record for winning Gold at the ‘Waffle Olympics’, I’ll let you off for being a bit cynical.  You’re thinking I’m kidding, right?

No, seriously, this WILL be a quick post as one eye is currently watching the Olympics (women’s diving, just in case you’re curious and very soon to watch Jade Jones in the Taekwondo semi’s) and my other is on the screen, whilst typing this! (I CAN multitask, yeah!)

It may not make any sense, mind.  But I’ll do my best.

Right, let’s get on with it, shall we?….

Scrolling though Facebook the other day, I saw a picture quote on one of the many disability/special needs sites I follow and it got me thinking.  You know, like you do.

The quote went something like:  “Before you start to judge me, step into my shoes and walk the life I’m living and if you get as far as I am, just maybe, you will see how strong I am”.

There’s other, similar quotes I’ve seen that’re just as good, but I especially liked this one (it was accompanied by a nice picture) and Oh, I DO like shoes!

Well, it’d be rude not to, wouldn’t it?

So, where am I going with this?…

Well, living in this ‘Special’ world of ours i.e. being the parent/carer of a child with significant additional needs, means (as well as being judged, but we’ll refrain from giving the judgers a mention here) I may often change my shoes (metaphorically speaking) several times throughout the day.

Erm, point of fact is I may actually, change my un-metaphorical (no such word, I’m sure!) real shoes.  But we’ll stick to the metaphorical stuff for now.  This IS a short post, after all *wink*

I think it needs to be said though that whilst it’d be pretty difficult for anyone, including a parent who has a child without additional needs to understand my/our world, equally, it’s often difficult for me to understand completely what other parents of children with additional needs may go through and step into their shoes.  I can empathise, of course, that goes without saying.  I can even grasp some of those feelings and fears and anxieties and challenges life constantly throws at us, but we’re all different – even if our children share the same diagnoses.

So, anyway, here’s my theory on what some of my metaphorical shoes are as a Special parent….and what I may (metaphorically, perhaps) wear during the course of the day:

Wellies/waders

Handy for wading through the mire of red tape, bureaucratic nonsense and general rubbishness of the ‘system’ (erm, what system?) us Special parents/carers face on (what can often feel like!) a daily/weekly/constant basis.

 

Flip flops

For those sunny, ‘life is good’ times….best worn in Cornwall, obvs!  Enough said. (Oh, Lordy, she’s harping on about Cornwall….yet again!)

 

Those sock things with sticky bobbles on the bottom that stop you slipping (no idea what their proper name is.  Technically, not shoes per se…but, well, just go with me on this)

Worn on ‘meh’ days, when you just need to give your feet [self] a bit of a warm hug and have a duvet day….not recommended when you have to put the bins out on a rainy collection day, mind….or if the dog needs walking.

 

Wooden clogs

When ‘one of those days’ occurs.  Thankfully, they’re less so, recently.  Excellent choice for kicking inanimate objects (like doors and such like)….when crying just isn’t sufficient enough to quell the frustration.  (I AM kidding, btw!…violence is not condoned.  Ever)

 

Louboutins

High, pointy, sharp (but breathtakingly beautiful) – these babies mean business.  Shoes that shout ‘don’t even think about messing with the mama’.  Required for meetings – usually complaints *sigh*, EHCP’s etc when much seriousness or a stern face is required.  Note: mustn’t be worn with baggy leggings sporting traces of your child’s lunchtime yoghurt smeared on one knee (not a good look!)

 

Big clompy work boots with steel toe caps (and maybe a pair of shin pads too)

Safety wear most apt when any piece of equipment is being handled.  We Special parents often have a plethora of this stuff knocking about.  Bruises/injuries are common.  Well, they are at Broccoli HQ!

 

Lead soled diving boots

OK, so, there’ve been the odd days here and there (hopefully now mostly in the past, never to return *fingers crossed*), when no matter what shoes I was wearing, I felt like I was drowning (metaphorically speaking, again!) and would never come up for air.  These little big beauts come with an oxygen tank.  Time to take control of those feelings, get the boots on, acknowledge those feelings and let them flow over me, have a gentle wander around the ocean floor for a little while and be fully aware of the ‘here and now’ stuff.  Refocus.  See the beauty around me.   Then whip ‘em off sharpish (Oi!  shoes only, mind!) get back on terra firma and face the world head on.

Oooh, what a random analogy type thing, eh?

 

Red sparkly ones (just like Dorothy’s in the Wizard of Oz)

For teleportation purposes.  The only classy means of making a sharp exit and quicker than catching the bus!  Reserved for any event I’d rather chew my leg off than attend, but have committed to during a mad moment e.g. Parties with clowns looking like they’re in need of anti-depressant medication or events with magicians seemingly with an alcohol dependency.  In fact, just general parties and gatherings where small talk with actual people is required etc etc etc (Yes, Mi Lord, guilty as charged.  I AM, more often than not, socially inept)

 

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Not Dorothy’s.  Not sparkly.  Nor are they equipped for teleportation, sadly!

 

Running spikes 

My preferred foot apparel when late.  For anything.  Which is usually for everything. Please refer to my last post which also refers to my lateness.  It happens a lot.  Apologies in advance if you’re due to meet me.  It’s unavoidable.

 

Ballet shoes

For twizzing around, in a vague pirouette/celebratory style.  Usually following a ‘battle’ won in the quest to get the things your child needs.  Hoorah!

 

See?

It was a relatively short post, after all….although I could’ve waffled on about shoes forever.  There’s tons of shoes for tons of different situations…or hats, in fact.  Oooh, I like metaphorical hats too!…and real ones.

Anyway, feel free to add in the comments box if you have any metaphorical shoes in your closet….or hats.

So, that’s all for this post my lovelies.

Thanks, as always, for stopping by.

Until next time

Annie xoxo

This post is dedicated to Christian Louboutin – who may or (more than likely) may not (like, ever!) read this post, but who (If he did read it) may wish to donate a teensy, weensy pair of his beautiful, delicious, coveted shoes to the author of this post….i.e. ME!  *stares into space and dreams of wearing beautiful shoes whilst actually scrubbing a greasy pan in the kitchen sink*

#ifyoudontaskyoudontget

#itwasworthatry

p.s. Apologies for the repeated use of the word metaphorical! *cheesy grin*

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The Mama-lympics

mama-lympics

Oh, I’m really enjoying the 2016 Rio Olympics at the mo.

I must note, however, just for the record, that my enthusiasm has ABSOLUTELY NOTHING to do with all those taut (male!) gluteals in lycra hovering around on my 40 inch plasma.

Nothing at all.

I’m being forced to watch it!

Honest!

(Am I protesting too much?)

But you know what?  Whilst I’m genuinely in complete awe of ALL athletes and sports people AND their families who dedicate years of their lives to their chosen sport, I think us parents could probably hold our own Olympics..

(Btw, just so you know, please don’t take any part of this post too seriously)

Oh, and whilst I named this post ‘Mama-lympics’ I’m not excluding the gents or other people who may play a huge caring role; like dads, grandparents etc.  Never would discount, never will do either.  It’s just that I couldn’t come up with a better title….the Special Olympics has already been nabbed….so Mama-lympics will have to do.

Sorry about that.

However, unlike our Olympians and other sports people, us parents/carers of children with additional needs don’t have physio on hand, there’s no dieticians, ice baths, masseurs (drat!) or even coaches.  It’s just us and we simply get on with it, without any training whatsoever and learning as we go along.

And we most certainly have no sport enhancing substances….aside from the odd Lucozade (breakfast) and the magic weekend juice (aka prosecco!).  Obviously!

So I’ve come up with a few events for the Mama-lympics and here they are….

 

The “Oof”

This must be accomplished innumerable times throughout the day.

The rules being that “Oof’s” must be mumbled whilst lugging the kid in and out of the car, in the bath, out of the bath, up the stairs, down the stairs, over the bars of the cot, on and off the changing bed, out of the pram/wheelchair, into the pram/wheelchair etc etc etc.

There must be no warm up.  The competitor must bend their knees whilst each ‘Oof’ is being completed.

Marks are given out of 10, per individual “Oof”.  The louder, the better.

 

The sprint

Self-explanatory, really.

…just running as fast as you can over a short distance.

Usain Bolt ain’t got nothin’ on me for this one! I’ve smashed his 100m world records on a regular basis whilst sprinting across the room when Hannah’s just about to slip something inedible into her mouth.  I don’t need running spikes and a starting block either.  Slippers, wellies, flip flops or 6 inch heels – you name it, I’ve sprinted in them all, baby!

 

100m hurdles

As above.  However, competitor must jump over a number of hazardous obstacles to reach the finishing line (child) e.g. lego, Mr Tumble books (slippy!), VTech dogs or fire engines or, in fact, anything with VTech on the front, Crayola doodle magic mat with pens and eraser, mobility equipment, bean bags, heathfield chairs.

There are no restrictions on competitors’ choice of footwear for this event.

 

Shot put

This event entails chucking the special buggy/wheelchair into the boot of the car with as much force as possible.  The rule being that it must be preceded by aforementioned perambulator refusing to fold up properly (usually whilst it’s raining cats and dogs) and the competitor must trap at least one finger within said equipment.

Extra points awarded if accompanied by several expletives.  The choice of words are optional.

Hannah’s daddy excels in this event….and get’s Gold every time!

 

Slalom

Competitors must navigate a variety of obstacles and chicanes – stationary people, moving people, just generally ignorant people, speeding cars, pavements, revolving doors, very narrow aisles in department stores and supermarkets.

Equipment required:  Mahoosive special buggy or wheelchair…and a small person.

Competitor must ensure small person does not pull a plethora of lacy knickers off the racks whilst perusing lingerie in M&S (I won’t get a medal then!) or covertly deposit a packet of pickled onion monster munch about their person whilst navigating the aisles in Sainsbury’s.

Points massively deducted if the security machines bleep on exiting the store.

 

Wrestling freestyle

This sport entails putting child’s clothes on, keeping child’s clothes on (especially in public places when said child – Hannah – enjoys being semi-naked in the Hobbycraft store…or anywhere else, actually *sigh*).  Ensuring child does not crack their head open on something sharp or catch something nasty, whilst lay on the floor of a filthy public toilet during a nappy change.  Putting child’s shoes and splints on.  Keeping child’s shoes and splints on.  Putting coats on, keeping coats on.

(I think you get the gist!)

 

Gymnastics

As per freestyle wrestling.  However, whilst completing the above tasks, competitor must undertake  backwards roll to pike, cartwheel, backbend kickover and a straddle jump on at least four separate occasions within a 24 hour period.

Easy peasy!

 

The lob

Letters/reports etc marked “To the parent/guardian of…” must be lobbed following immediate delivery through the letterbox.

Competitor must ensure the envelope skids as far as possible across the floor.  Distance is key in this sport.

Again, athlete must curse (extra points will be awarded dependent on strength of profanity) whilst stating “I. HAVE. A. NAME.  I wished they’d put MY (add expletive here) NAME on it…arghhhh!!!!!!”

 

The apology

Two competitors are required –  one big one, one small (ish) i.e. a child.  All athletes will undoubtedly excel in this event.  However, mini/junior competitors will unquestionably receive a gold medal every time.

The aim of the game being that Mini/junior competitors must do everything in their power to ensure their opponent DOES NOT arrive on time.  ANYWHERE.  EVER!

Tactics can and may involve:

  • An untimely poop, usually 1 minute prior to departure – the messier the better
  • Crying for no apparent reason
  • Rubbing pasta with tomato sauce into their hair
  • Stiffening the whole of the body and pretending to be a starfish whilst navigating out of the door/being strapped into the car seat
  • Hiding competitors car/door keys in the bin or toilet
  • Taking all clothes and shoes off immediately after being dressed
  • Rolling around on the floor
  • Demanding a nap
  • Being sick down the big competitors clothes.  Extra points awarded if this also involves their hair.
  • Just generally mucking around and being a bit wild.

The loser (which, naturally, WILL be the grown up competitor) must be made to humbly apologise on arrival at the final destination and be a bag of nerves for at least 30 minutes after the event concluding.

Mini competitor must subsequently retain a completely calm composure and use total charm offensive in the company of others – ensuring loser looks like a liar/complete numpty.

 

The hospital/doctor dash

Mini competitor MUST present as desperately ill and in dire need of immediate medical attention.  Grown up competitor must panic and probably risk a speeding ticket to seek intervention.

Mini competitor must then, on arrival at A&E or the doctor’s surgery regain complete composure.  They must laugh, resume a rosy cheeked complexion and present as perfectly healthy.  Again, thus, ensuring loser looks like a complete numpty/liar.

Extra points awarded for crying inconsolably, eyes rolling to the back of the head, vague rashes.

(Hannah is exceptionally good at this event!)

 

…and finally….

The arm curl

(n.b. For grown up competitors only)

Competitor must apply a gentle hand to mouth action whilst gripping a large glass of prosecco (other alcoholic beverages are available, apparently!).  No liquid must be spilled in this event.  This must only (usually) be conducted on a Friday/Saturday night – unless competitor is in desperate need of relief during the week due to a particularly stressful aforementioned event (see above).

n.b. Whilst I did mention at the beginning of this post not to take it seriously, I don’t, in any way whatsoever, condone hitting the bottle in an attempt to get through stressful events.  Please seek help if this is becoming problematic.  Alcohol is not the cure.  Just sayin’

 

So, my lovelies, that’s me done for this post.

I’m sure many of you could add a few more events to this!  Feel free to add in the comments box below.

Thanks, as always, for stopping by

Until next time

Annie xoxo

P.s. Oh, just before I go, I want to say thanks SO much for that overwhelming response to my last post (for Hannah’s birthday).  Alongside all your good wishes, the 115 Facebook shares were ABSOLUTELY BONKERS!

Guys, you’re amazing.  Thank you. xx

This post is dedicated to all the Paralympians and athletes with a disability – you really are awesome! #NeverSayNever  ❤  

 

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Happy Birthday Hannah – 2016

Hi Guys!

OK, so, if you hadn’t already guessed the theme of this post, the clue’s in the title.  This post’s for the kid…because it’s her birthday!….but please don’t let that deter you from reading on….only if you want to though, obvs!

Annie  xoxo

 

Well Tiger, it’s your 7th Birthday.

Yay!

You won’t know this yet, but throughout the years I’ve written you letters and kept them in a special box just for you to read.  I’d like to think that one day you’ll have the ability to read them.  I’d like to think we could even read them together one day…and you can have a good old laugh at your mama, roll your eyes and call me a schmuck for being so slushy.  But, whilst none of us can predict what the future holds for any of us, I’ll always live in hope – even about you calling me a schmuck!  However, regardless, they’ll be kept safe…for you and you alone.

I did contemplate writing you something a bit daft, including giving you some advice for the future, like – never pluck any stray hairs on your chin or you’ll eventually end up with a beard…just like your mummy *sigh*…or don’t eat ice cream near a Cornish seagull, because they’ll swoop, steal it out of your hand, whilst also attempting to take your fingers with it…the evil little buggers!  But really, you deserve much more than that.  Especially on this, your very special day.

But maybe I will write you something like that in the near future, just for fun.  However, today, I want to write to you straight from the heart…

Seven years, huh? Where did those years go?  Sometimes it feels like those years have passed in the blink of an eye.

IMG_0822

Hannah’s very first Christmas

Naturally, you won’t remember the times when we celebrated your first Christmas together or your first birthday, but they were incredibly special days – as each and every single day has been since the day you were born.

I’ve never taken a day with you for granted!

I’ll never forget your first smile.  That first delightful hug – I waited a very long time for that (four years, in fact!), but it was simply perfect when it happened!  I’ll always remember the first time you rolled over on your own (after daddy and I spent what felt like forever tirelessly trying to help you do it) and when you were able to sit up all on your own (you’d turned two by this time) I knew we were moving in the right direction, I felt like we’d been given a little hope.  Real hope that we could help you to do other things too.  And, oh, that first, long awaited, direct eye contact you gave me was a sign we’d finally connected *melt*.  There’s a line in a song by James – one of mine and daddy’s favourite bands – that reminds me of you.  It goes “sometimes, when I look deep in your eyes, I swear I can see your soul”.  And whether people think that’s completely bonkers or not (I don’t care!), sometimes I do.  I really do!.   And I think you have a very beautiful soul, Hannah.  You’re magnetic and magical and sparkly and have an aura about you that’s incredibly powerful.  You don’t blend in, you were definitely born to shine! Not everyone has that, but lots of people desire it…and it can’t be bought or manufactured.  You’re a very lucky little girl!

And how could I ever forget those glorious first steps which was suggested might never come?.  Just utterly Heavenly!

Through this, I’ve learned not to believe anything that anyone says, not to allow anyone to predict the future and to never say never.  Ever!

(btw, apparently a young chap called Justin Bieber has done a song with the same title…our motto seems to be catching on!)

Anyway, let’s hope that we have LOTS more wonderful firsts!

Hannah, watching you grow and flourish truly is a blessing.  But if I’m honest, a part of me wants time to stand still, for lots of reasons.  I adore that zest for life you have and your independent, feisty spirit (YEAH!)…and I certainly wished I had your energy!

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Happy days in Cornwall

 

Right now it seems like you still have no awareness of your birthday and I really wished with all my heart that I knew what you were thinking or what you understood.  Wouldn’t it be amazing though if you could decide what you wanted to do on your birthday or what you’d like for a present?

But I know you take pleasure in everything you receive and I know you love going out and having fun…so that’s just what we’ll do.

Last year was a tragic one.  We lost your beloved grandpa and I know exactly how much you loved him – I could see it clearly in your eyes – and he absolutely adored you, Hannah.  And then, thirteen weeks later and just two days before your birthday, we lost your grandma too; my mummy.  They loved and adored you so much sweetheart.  In fact, I can’t actually articulate exactly just how much love and pride they had for you – their only granddaughter.  It’s my belief that they’re together and I believe they’re looking out for you and I know, for a fact, that they’d want you to have a wonderful day and an incredibly happy life.

Of course, you’ll get gifts for your birthday and whilst it’s quite nice to receive presents, we mustn’t ever forget that they’re just ‘things’ that probably won’t last too long.    So, as well as buying you some things, here’s what I most wish for you on your birthday and for always….

 

I HOPE YOU…….

 

  • Feel loved…now and forever!
  • Never stop smiling. 
  • Never stop loving life and having fun. 
  • Have at least one true friend who’ll be there for you, no matter what.
  • Never stop learning new things. 
  • Never stop loving the things you love…including broccoli!:)
  • Stay healthy…please stay healthy, precious girl. 
  • Feel safe…always!
  • Embrace every new day as magical and exciting.
  • Never feel lonely or sad.  But if you do, put your hand on your heart and feel your heart beating.  Remember those people you love and who love you?  Well, they’re inside there and even if you can’t see them or speak to them, they’re with you.  Constantly!
  • Have everything you need in life.  But remember, whilst people need money to get by, there’s lots of things they don’t need, but rather they want.  There’s a huge difference between the two.  There’s nothing wrong with having aspirations, but don’t ever become one of those people who perpetually want – it’s an ugly trait.  And don’t forget that no-one, but no-one, is wealthier than you if you have your health and feel loved.  That’s priceless!
  • Appreciate the beauty that’s all around you – from the stars in the sky, to the sun glittering on a calm sea, to the flowering weeds that grow in the cracks of the pavement.  Beauty is all around us. Try, every day, to just take the time to look, just like grandpa taught me to do.
  • Are always kind and compassionate.     
  • Can forgive the mean people, the manipulators, the ones who snigger, the people who judge, the ignorant ones or those with their own agendas – rise above them,  stay away from them, ignore them my darling and trust in Karma.  Karma is a wonderful thing!
  • Are ALWAYS proud of who you are and your achievements.  Never, EVER be ashamed of your uniqueness, never be afraid of being YOU.  Hold your head up high and keep it there. 

 

Oh, there’s a million and one things I wish for you, Princess.  I especially wish right now for you to have the ability to speak or communicate effectively in some way.  Any way in fact.  But we can’t have that.  Not just yet, anyway.  But we’ll get by.  We always do.

Hannah, you’ve given me so much happiness and taught me a great deal since you came into my life and, through you, I’ve learned what unconditional love was really all about…what a perfect gift you gave me…thank you!

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Love this photo! ❤

 

Whilst our journey isn’t the one I wanted for you, I feel humbled and honoured and really blessed to have been entrusted to care for and protect you and overwhelmingly proud that you’re my daughter; the child I was once told I’d never have.

Forgive me if I get it wrong sometimes.  To be perfectly honest, I’m just winging this mummy role and learning as I go along!  But know, always, that I’m trying my very best…and I wish the very best for you.

The world is a much better place with you in it Hannah and there are many people out there who could learn a lot from you!  I love you more than you’ll ever know.

Happy, happy, happy birthday, my perfect, precious girl.

Wishing you a wonderful day.

Forever,

Mummy

 

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Girl meets boy

Hello my lovelies!

Our lovely friends across the globe…”Hello!” *waves vigorously on tip toes*…probably won’t know that it’s been a bit of a scorcher (hot!) for the last couple of days at Broccoli HQ and all around the UK.  So extreme has it been, that many of us aren’t used to this crazy, crazy weather…including me.  Last week it was so cold that I was contemplating putting the central heating on.  This week, I’m praying for rain.  LOTS and LOTS of rain!

There’s no satisfying some people (me) and, apparently, us lot in the UK are renowned for moaning about the weather.

So, I’m moaning about the weather…

Right, moan over.

Actually, I blame Brexit for this weather.

Kidding! (and being a bit controversial…oooh!) *sucks teeth*

Mind you, it absolutely wouldn’t surprise me if someone, somewhere, has blamed Brexit for the weather!

*sigh* and *yawn*

Anyway, as it’s been SO hot in the night and I’ve been a tad pre-occupied with ‘stuff’, sleep has evaded me somewhat.  So, late at night, after reading an extremely funny mummy blog in attempt to cheer me up– which it did, as it included drawings and lots of swearing and alcohol and general mummy malaise and despair – I thought I’d have a bit of fun with a new post.  However, there will be no swearing (drat!), no mummy malaise or despair (well, not in this post anyway) and maybe a tiny drop of alcohol.  Cheers!  *raises a toast*

So, in order to do some drawing, I raided Hannah’s art box and got cracking.  Initially, I wasn’t sure what to write about or draw.  But then I had an idea…

So, here it is…

Drawings and life are all my own, btw.  Feel free to nominate me for a Turner Prize or some other fantastic, famous artistic accolade.  I won’t mind.  *wink*

 

 

Once upon a time, this girl met this boy.

He was handsome and muscly and had nice teeth and, just looking at him, made the girl feel all fuzzy inside.  The girl told her friend that he was the spits of (i.e. spitting image/looked like) Daniel Day Lewis in Last of the Mohicans….but without the loincloth and spear thing.  Ooh, or that John Corbett bloke…the one that did Northern exposure, Sex and the city, My big fat Greek wedding, etc etc etc (but without the accent, wealth and fame)

The girl’s friend thought she’d gone completely bonkers.

She may’ve had a point!

Because, the first thing the boy ever said to the girl was…

“Don’t come sweating near me” (fact!)

She thought that was THE most romantic thing anyone had ever said to her (erm…not so factual)

And even though they were in the gym at the time, the girl made sure she didn’t sweat all over the boy.  Anyway, girlies don’t sweat; they ‘effervesce’ or ‘bloom’ or something more feminine-like.

But the boy did lots of sweating, as he’d already done his usual extensive work out before the girl arrived to do hers…but he hung around and did a second work out just to be near her, because he liked her too.

Awh!

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They went on lots of dates and drank some wine, then decided it was time to settle down.

So they lived together for years and years and years and had lots of crazy fun.

People were expecting a baby to come.  But the baby never came and the doctors told them the baby would never come.

Whilst a bit sad about this, they just got on with their life and had lots more crazy fun.  They didn’t have much choice, really.

After more years and years and years their friend Kevin told them they were rubbish and it was about time they got married.

So they got married.

No-one was allowed to stick their nose in and spoil the day.  The girl didn’t wear a meringue.  Not a quiche, boiled egg, sausage on a stick or vol-au-vent was in sight. There were no bridesmaids and no ‘oops up side your head’ to muck your frock up on the dance floor to.

It was a perfect, perfect day.

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Then, one day, the girl felt a bit funny, so she bought a stick from the chemist and the stick told her a baby was coming.

The boy and girl had lots of dreams about how life was going to be.

A man in the hospital squished some cold goo on the girls tummy and the television screen said the baby was a girl.

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The girl and boy were very happy about this and they saved all their money up for the perfect life they were going to have.

After a while, a stork flew over the hospital and the baby arrived (well, not exactly.  Ladies, I am SO not going to minimise the overwhelming, excruciating pain of childbirth….oh no! no siree!!).

Anyway, the girl and boy now had to change their names to mummy and daddy.

The hospital people swarmed around like bees and said the baby was very poorly and would have to live in a (grotty) plastic box and have a tube that went into her tummy to put milk in.

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The doctors tested the baby for lots of things and told the mummy and daddy that life would probably be very rubbish in the future.

Mummy and daddy were very worried and scared.

After a few weeks, mummy and daddy were allowed to take their baby home.

The baby needed milk in her tummy 24/7 and there were lots of appointments and more tests, so mummy and daddy didn’t get much rest at all.

At the time, it felt like the doctors were right all along.  Life was quite rubbish!

Mummy and daddy were really fed up with stupid people saying stupid things AND the ones who had eyes on sticks when they went outside, but they just got on with it and made the most of everything.

They loved their baby very much and decided to make sure that things would be less rubbish than the doctors said.

Some people didn’t know what to do or say when the baby came, so they went away.

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Mummy and daddy weren’t bothered at all about this.  They had more important things to think about.

Daddy went to work and got money for food and stuff and mummy and baby went to appointments to see the ‘important’ people.

Mummy got grumpy at many of these appointments (and wanted to swear a lot) as most of these important people just ticked boxes on pieces of paper and didn’t do much, other than make her very sad and stressed and worried.

Then when daddy came home from work, mummy would sometimes cry a bit or moan a lot and complain that she was tired and really, really, REALLY fed up.  So daddy went to the supermarket and bought her some fizzy weekend juice that made her feel lots better.

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(N.B. Just for the record, I am NOT alcohol dependent!)

Baby was growing up now.  Baby liked to eat broccoli but nothing much else was happening.

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The books kept telling mummy that baby was now a toddler and should be doing more stuff, like sitting up.  But no matter what mummy did to try and help, the toddler just couldn’t do it.

So mummy phoned some special people who she thought could help.

The special people were miles away, but mummy didn’t care.  She’d have gone to the moon if she thought it’d help the toddler.

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They said bring the toddler, we’ll have a look at her.

So mummy took the toddler to the special people and they had a look at her and said they’d have a go at helping.

The toddler had lots of fun there and started to sit up on her own.

Mummy met lots of other mummys there who were in the same boat.  They said “me too” a lot and they also used to cry and were really fed up…and this made mummy feel much better and less alone.  Mummy suspected some of them also drank magic fizzy juice at the weekends too!

Then on Christmas Day, when the kid was almost three and a half years old, she took her first steps.

Mummy and daddy were euphoric.  They stuck two fingers up at the important people who said this’d never happen, then they cried a lot, said “Hip Hip Hoorah” and drank champagne (very expensive magic juice!) to celebrate – once the kid had gone to bed (obvs!)

Mummy, especially, has learned a lot on this journey.  She is now rather adept at lots of things: like dodging flying plastic missiles disguised as ‘toys’ that the kid aims at her head, writing reports, being grumpy with/ignoring stupid people who say or do stupid things, juggling an incredibly busy and stressful life.  Daddy is still very good at buying special magic juice for mummy, preparing dinner, cleaning and ironing, getting up to much mischief with the kid and patting mummy on the back when she’s feeling grumpy or sad.

But whilst the kid can’t do tons of stuff like other kids can do just right now, mummy and daddy love the kid more than anything, have learned that life isn’t as rubbish as they’d been led to believe, will do their best to help her learn new things and will #NeverSayNever.  Ever!

And whilst their ‘Happy Ever After’ wasn’t exactly how they’d anticipated, they feel very blessed.  Very blessed indeed.

The End.

Actually, it’s not the end…not at all.  Just the end of this post.

drawing

 

Right my lovelies, that’s all from me right now.

Thanks, as always,  for stopping by.

Look out for next week’s post…It’s Hannah’s birthday – Yippee!

Until next time

Annie xoxo

This post is dedicated to that girl and boy all those years ago.  Who’d have thought, eh?

 

Posted in Parenting, Silly stuff | Tagged , , , , , , , , | 6 Comments

That time of year again

Well guys, it’s that time of year again.

The end of term is coming up for school kids in the UK (Dear Lord, help us all!), parents evenings are being attended, end of year reports completed and summer (erm…hang on…WHAT summer?*) holidays eagerly anticipated.

*To our lovely friends across the globe – please come and visit the UK sometime – whilst some of our inhabitants are a bit grumpy atm, as a result of the old Brexit malarkey; it’s a beautiful place (mostly), steeped in fabulous culture and history and stuff – but don’t forget to bring an umbrella…and a sweater…oh, and maybe some wellies too!

Anyway, back to the reason for this post…

This school year’s been an extremely good one for Hannah.  I received her annual report this week and IT. IS. GLOWING. *does a fist pump and celebratory jig/moon walk*

I’m so proud.  Well, actually, I’m always proud. But it’s lovely to read about her achievements.

I’ve noticed a leap in her development this year – some things you can’t really put your finger on and be specific (if that makes any sense) – others, like pointing at objects, being able to count to 3 on her fingers (enjoying it repeatedly and without any prompts) and just her overall demeanour has really improved…although her sleep pattern has taken a nose-dive and is absolutely dreadful at the moment and her self-harming behaviours have, at times, become incredibly troublesome.  *sigh*

This kind of leap mirrored the summer holidays last year.  But Hannah wasn’t at school then…and I’d like to take at least some of the credit for that *gives herself a rare, but well deserved, huge pat on the back* because I also work extremely hard to help her achieve new things.

This academic year, Hannah’s been able to focus a little more, apparently said her name…OH. M. G. SHE SAID HER NAME!!!!!!!!!!!!!…but sadly, I wasn’t there to witness it and it’s not happened again *sobs* and the recently implemented PODD board to aid her communication has been a success in the classroom for some basic (but nonetheless, hugely important) things.  That’s but just a few examples.  And whilst I totally get that this isn’t a big deal for many parents of an average almost 7 year old, in our world, these achievements are ABSOLUTELY MASSIVE.  Because, to be concise (that’s rare for me!), if you’re new to our blog, “Hello!” *waves enthusiastically*, Hannah has a rare genetic syndrome that affects most aspects of her life.

Hannah’s returned home from school with SO many Star of the week certificates this year and each and every one of them, I know, she’s worked hard for and they haven’t been awarded to her just for the sake of it.

She’s received certificates for a plethora of things (If you follow us on facebook, you’ll have seen all the certificates I’ve bragged about), including:

  • Role playing beautifully with her friends…and signing ‘pig’
  • Attempting to vocalise ‘teddies’ in an SLT session
  • Learning to use her PODD board recently – for communication

…which have all left me rather misty eyed and, if I’m perfectly honest, a tiny bit envious and melancholic that I wasn’t there to witness those times.

And this week (pictured) she returned home with a Class Explorer Award – heart-warming words and simply lovely!

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But whilst, ultimately, Hannah’s done all the hard work, there’s other people that’ve significantly aided and facilitated this journey and their commitment to helping her learn has made a HUGE difference this academic year – and those people are her teacher and teaching assistants.

I can vividly recall the anxiety of having to let go and entrust Hannah’s care to other people when she first started school.  Because, let’s face it, she’d be spending more time awake and at school with others, rather than at home with her daddy and I and I needed assurances (still do…I’m needy like that!) that her needs would be met, she’d be encouraged to learn and that she’d be safe.  It was time for us both to take that leap and it was important for Hannah to spend time with other children too.

…and that was scary.

Really scary.

In fact, it still is sometimes.

Sure, there’s been some blips along the way…that’s life, isn’t it? Life can’t run smoothly all the time – although sometimes I just wished it wasn’t as bumpy at Broccoli HQ!  But this year, whilst development remains slow (but we’re moving along steadily) Hannah’s been more responsive to learning, more able to focus, just more ‘awake’ – if that can make any sense.

So, to have people around that ‘get’ her, her little idiosyncrasies, who notice her mood, encourage her to do things, know her strengths and needs, give her a reassuring cuddle when she needs it and all the other stuff, is just…well…lovely.

Here’s some of the other things that can help Special Parents…and the, erm…slightly neurotic ones, like me:

  • Staff who can spell, use grammar correctly and, in general, can communicate effectively and are available (when they can) to communicate with – need I say more?
  • Staff who’re creative, focused, flexible in nature and attitude and, despite probably being totally fed up to the back teeth with savings and efficiencies  i.e. a fluffier way of saying ‘cuts’ (aren’t we all!) get on with it without it affecting the kids
  • Communication books that give a clear picture of the school day/behaviours/achievements/concerns.  Not ones that just say “Hannah’s had a good day” – that’s useless/pointless.
  • Don’t make assumptions.  Don’t guess. Don’t ever think you know everything about a child and more than a parent…because you won’t.  Collaborative working, alongside parents, is essential.
  • Friendly, welcoming faces.  People who introduce themselves. People who you know your child will have fun with.
  • People who call you by your NAME – lovely!
  • Observant, consistently vigilant staff – staff who have eyes in the back of their heads ALL DAY, EVERY DAY, because, believe me, you need it when looking after Hannah and keeping her safe.
  • Staff who, through their actions (yes, we are very observant!) demonstrate their genuineness,  how they interact with your child and others, how they liaise with other professionals to get your child the things they need, how they strive – also through a mire of frustratingly, often pointless red tape and inadequate services – to ensure things are in place
  • Resources and needs led learning materials.
  • Trips out that are appropriate to the curriculum and the kids…not the staff.
  • Seeing your child as a child FIRST.

We’re lucky that we’ve had all that and a whole lot more….and I’m so grateful to those staff (I’d better not name names – I’ll probably get into trouble! – but they know who they are) for giving Hannah a happy, fun filled AND (more importantly) productive academic year (and, although I’ve thanked those significant staff in the past too…I’d better not leave them out either, or they’ll tell me off and give me detention or 100 lines!)

THANK YOU!!! 

Oh, and also thank you to the office/reception staff – who probably never get a mention anywhere, but ought to be just as valued – for your help and smiley faces….and for letting me out of school because I can’t reach the exit button!  I know some of you follow our blog…so please pass it on.

In fact, let’s extend this thank you and give a big shout out to TA’s, teachers and pedants everywhere, who’re committed to making a difference.  We can often tell it’s not just a job/salary/for the ‘kudos’, for you…it’s a vocation!

Have a good rest…you’ll need all the energy you can muster, if you’re working with Hannah in the future!:)

So, that’s almost all for now my lovelies.

For parents of children just starting out on their journey through school – try not to be too anxious.  It’s easier said than done, I know. I totally get that.  But it may not be as anxiety ridden as you’re anticipating.

And for parents about to commence the summer holidays – I feel your pain! I hope you all make it through in one piece and your bank balance doesn’t take too much of a hit! See you on the other side guys! *gulp*

Oh, and of course, how could I not acknowledge my kid in all of this?…WELL DONE TIGER, YOU’RE JUST AMAZING!!!!!

Right, I really am off now…I’ve got a parents evening to go to!

Until next time

Annie xoxo

This post is dedicated to the people who’ve helped Hannah this year…you know who you are. x

Posted in Education, Speech, language and communication, Syndromes/Special Needs | Tagged , , , , , , , | 2 Comments

Not all about me…but a bit

me

I think my favourite post of all time is the ‘I See You’ post I wrote not too long ago (apart from the glitter poo one…that one’ll always have a special place in my heart!).  But it all gets a bit serious and made people cry – even me! (sorry!) and I mention feelings of lost identity when you’re a Special Parent.

So after writing that, I got to thinking.  You know, like you do.

Who am I?

Well, I suppose I’m just me:

Mummy, wife, blogger, friend, colleague, blah blah blah.  You know, the usual stuff.

But that can’t possibly be a finite explanation of who I am, can it?

I can’t ‘just’ be that, can I?

You see, I think our identities can be fluid, malleable things – shaped by our experiences, thoughts, behaviours, history, people, faith, dreams and aspirations and all manner of other stuff.

We’re unique – yay!

And sometimes it’s all too easy just to forget about you, your likes, dislikes, ambitions etc and become so consumed in our Special Worlds that all that stuff just gets cast by the wayside.

Well, I dunno about you, but it has for me…only because I’ve allowed it to though.

So, I challenged myself to one of those questionnaire type things that you can get off the internet, just to remind myself a little about ME …and here’s the ramblings I came up with (warning: I feel the need to get stupid!):

 

Name

Known by many…some good, some not so good!  *shrugs shoulders in blissfully ambivalent manner* – that ambivalence often comes with age…which leads me nicely onto….

Age

Growing up is seriously overrated.  Age is just a number. And anyway, ladies never reveal their age…although I’ve never claimed to be a ‘lady’.

Lives

At Broccoli HQ, England, Europe (yes, don’t panic peeps, we’re still in it!), The World, The Universe.

Favourite celebrity

Hannah, of course!

Aims and Ambitions

To ensure my kid has ALL the support she needs, both now and in the future, so that she can reach her full potential.

To live in Cornwall ASAP (without neighbours…I’ve had my gut full of them! – long story, will tell you one day), close to the sea, in a small, self-sustainable house with a walled, organic cottage garden.  We’ll have alpacas and lots of rescue animals.  I’ll set up a charity where families with disabled children can come for holidays (totes FOC!) with staff on hand and all the equipment and stuff they need to ensure they have THE bestest, most luxurious, most relaxing break, like EVER!.

Ambitious? Maybe. Impossible?  Never!

Coronation Street or Eastenders?

Neither.  I’d rather watch paint dry…or chew one of my limbs off.

Tea or coffee?

Prosecco, thank you very much…or a good bottle of wine.

A night in or a big night out?

Hahahahahahahahahahaha…A NIGHT OUT??????? *laughs hysterically*  Need I elaborate? *puts pyjamas on and lolls on the sofa*

Dog or cat?

Dog.

Favourite food

Weeeeeeeell, I suppose I ought to say Broccoli, but I won’t.  Let’s discount the innumerable times I’ve prepared something nutritious for Hannah, forgot to make myself something in the process and resorted to scrabbling around for something quick, raw and vaguely edible until Hannah’s daddy comes home/to the rescue.  But, if I had the option of something fancy then…

I’ll go for scallops in lemon butter sauce with samphire.  A classic Caesar Salad – made properly!. Steak (yes, I’m the only carnivorous pariah at Broccoli HQ!) with wholegrain mustard on the side.  Oh, and crisps…lots and lots (and lots) of crisps. A lovely glass of champagne or a Bellini from Harry’s bar in Venice.

And if I’m hormonal….Toblerone…as big as your arm.

Om Nom Nom.

Dislikes?

Greed.  Ignorance.  Bullies.  Nasty people.  People who slam car doors outside my house EVERY. SINGLE. DAMNED. DAY. REPEATEDLY!!!!!!!!!!!!!!!!! White van men who drive like idiots. Snobbery. Liars. Pompousness. Starers. Discrimination. The Kardashians, X Factor, and any other mind-numbing, hyped up, staged programme. Selfies and trout pouts.  Hysterics. Loud people. Women who speak unpleasantly about their girlfriends behind their backs (I JUST don’t get that. Why, WHY?). People who are really rubbish or lazy at work, but can ‘talk the talk’, so everyone’s tricked into thinking they’re wonderful…except me!  Celebs who boast they’re back to their size 6 frocks, a week after giving birth….arghhhhhh!!!!!!!!!!!!!!

Likes?

Eccentric, colourful, non-conformist people; People who aren’t scared to have their own thoughts and don’t follow the herd.  Traditional Morris dancing (don’t ask me why…I just LOVE watching it!).  Music.  British folklore and customs. Cornwall (obvs!).  Reading. Expletives. Writing.  Hannah (obvs, again!).  Mooching around on the beach.  Steak and blue Cornish pasties.  Sleeping.  Yes, sleeping….Mmmmmmmmmmmmm.

How would your friends best describe you?

Faithful. Good listener. Reasonably clever. Acerbic. Stupid. Weird. Hirsute. Vertically challenged. Should’ve got a job in a circus.

Erm…hang on a minute…are these guys REALLY my friends?

Celebrity Dinner Party Guests

Hannah (obviously), Lord Buddha, Greg Davies (of Man Down fame), David Bowie, Iggy Pop, Vivienne Westwood, John Cooper Clarke, Tim Booth (utterly, gorgeously, delicious man!), Caitlin Moran, Robert Downey Jnr (as long as he brought his Iron Man outfit, so I could have a play in it), Quentin Crisp, Les Dawson, Seasick Steve, Luna Lovegood (of Harry Potter fame), Chaz n Dave, Maya Angelou, Gene Wilder, Robin Williams, Gilbert & George, Jim Broadbent, Peppa Pig’s dad, Frida Kahlo, Kit Williams, Victoria Wood, Morgan Freeman, all the musicians from the Buena Vista Social Club including Ibrahim Ferrer (felt privileged to go and see them pre-Hannah days…the pianist made me weep!), Marc Almond, Kathy Burke…….

Erm, looks like I’m getting a bit carried away. So I’d have to purchase either an EXTREMELY large dining table…or just serve finger food!

Can’t live without

Hannah…even though she drives me completely potty and scares me stiff – both usually on a daily basis.

Favourite book

Perfume: The story of a murderer – Patrick Suskind.  Blimey, that was decisive of me, wasn’t it?  No ramblings there…just straight in!

Favourite Film

Oh, now, that’s a tricky one.  You see, I can watch something and think it’s absolutely brilliant, then can’t remember the name of it the day after…or, sometimes, who’s in it…or even the plot! There’s tons I like, but I’ll have to say Bridget Jones Diary (me, in a past life!), however, I DO love a bit of Harry Potter!

…although Life is Beautiful and Philomena…both deeply sad but equally beautiful in their own way, but both of which make me sob uncontrollably, so I tend to avoid films like that if I can help it.  Our life’s grim and stressful enough as it is sometimes, without adding to it!

Dreams that one day…

Hannah will speak and there’ll be a ‘cure’ for her syndrome.  Now, a handful of you may gasp in absolute horror and disgust that I’ve mentioned the word ‘cure’…don’t bother jumping on the keyboard, I won’t listen to you, you’d just be wasting your time.  But just for the record, YES, I DO absolutely adore her and all her idiosyncrasies, but I’d give anything, ABSOLUTELY ANYTHING for her NOT to have the difficulties she has now and what she’ll face in the future.   So yes, I want a cure for her…and for all the people affected with her syndrome, if they want that too.  I make no apologies for this dream.

Favourite place

Need I say?…however, I’ve been to Venice innumerable times and I’d really like to go back there one day and introduce it to Hannah and her daddy.  Even if it was just for a day.

I am skilled at

‘The look’ – my friends know exactly what that is…and, apparently, it’s scary!  Although I’ve never seen it myself. *wink*

Using peripheral vision to swiftly dodge a hard plastic toy that’s been accurately projected by a small person (i.e. Hannah) with immense force towards my head.  Usually whilst I’m on the phone *sigh*

Keeping calm…either in a crisis…or at stupid people who make offensive or speculative remarks about my kid.  Although for the latter, it’s probably best either to (a) move all sharp or heavy implements out of my reach (b) restrain me or my mouth. Or both.

Appearing as cool as a cucumber (whilst shaking internally) on returning to a restaurant dining table after a rather stressful trip to the loo.  Namely, after my child has manufactured THE most malodorous ‘poop-nami’ EVER!.  As the contents slowly bubble up the back of her frock and into her hairline (sorry, TMI there?…but they can be, let’s say, Vesuvian!), I casually (but with silent urgency!) escort her to the non-equipped disabled loo – WHICH IS NOT TUCKED AWAY LIKE THE OTHER TOILETS ARE…OH NO, IT’S RIGHT NEXT TO A LOAD OF DAMNED DINERS HAPPILY TUCKING INTO THEIR SUNDAY LUNCH…WHY…WHY?????????????.  And deal with the matter in hand.  I am now extremely adept at not getting *coughs* ‘vesuvian lava’ on mine or my child’s clothes whilst scrabbling on the floor with her, trying to make her feel comfortable and clean (with the remaining 2 semi-dry ‘wet’ wipes left in the changing bag), whilst ensuring she doesn’t wiggle around like a lunatic and crack her head open on something.  Anticipating, any minute, spoiling several people’s lunches, I then weep a little over the peddle bin with exhaustion, before exiting said bathroom as ‘The heady miasma of Vesuvius’ follows in our trail – aforementioned diners now retching into their Yorkshire puddings.  *wince* Oh, I could write a book about all this stuff!

So, there it is.  Just a snippet or two about me (and Hannah’s bowels – apologies!).  I enjoyed sitting and pondering for a bit.  Thanks for that.

And thanks, as always, for stopping by.  I really do appreciate it.

Until next time

Annie   xoxo

Posted in Miscellaneous, Parenting, Silly stuff, Uncategorized | Tagged , , , , | 5 Comments

The Acceptance Speech

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So, if you follow us on Facebook (Hello! *waves enthusiastically*) you’ll already know that Hannah received an award recently.

Oh. M. G…..AN AWARD!!!

You know, every day I’m proud of (and in awe of…and often completely jaded by) this frequently scruffy, fun loving, AMAZING kid, who grasps life by the throat, gives it a good shake around (and maybe a bit of a bite) and then just gets on with it.

If only I could bottle her zest for life.  I’d make an absolute fortune!

But my heart could’ve burst with pride when she collected her certificate and award.  OK, so we’ll quickly skip over the bit where she threw her certificate on the floor and I swiftly accepted the trophy on her behalf (in anticipation of her lobbing that too and taking someone’s eye out).

But she accepted it, nonetheless.

What was the award for?  Well, Hannah was the recipient of a Rainbow House Conductive Education Achievement Award.  Ooooh!

Just in case you didn’t know, Rainbow House is a place we’ve been attending for several years now…it’s been our lifeline in many ways…and she received the award for ‘signing’ appropriately during her Conductive Education sessions (I wished she’d do that at home for me! *sobs*) AND for always smiling.  Yep, I can absolutely vouch for that.  Well, actually, she doesn’t always smile – that’s an exaggeration. Nevertheless, she does it quite often. Thankfully.

So, for any new visitors to our blog (Hello to you too! *waving vigorously whilst on tip toes*), Hannah has a rare genetic syndrome which pretty much affects most aspects of her life, including currently (although we never say never here at Broccoli HQ) being non-verbal and extremely limited in her communication skills.  So, sadly, she couldn’t say thank you or anything else for that matter, when she received her award.

But I got to thinking, you know, as you do sometimes.  What IF she was able to make an acceptance speech at an awards ceremony, what might she say?

Hmmm…. *scratches head*

OK, so we’re not talking about receiving an Oscar or a BAFTA here (this one’s far more important!) – where you thank every man and his dog , blubber quite dramatically whilst throwing in a bit of a statement on some hot topic or other,  but just bear with me on this if you can.  Well, let’s have a bash at predicting what she might’ve said, shall we?…and perchance, have bit of fun with it too.  Because, TBH, many of my posts seem to have made at least one person cry and that’s never been my intention.  Really!  So, if you get even remotely misty eyed by this post, I’ll be mightily fed up.  Get it? Got it?  Good.

Right, here goes…

Let’s imagine some preened, affluently dressed, famous kinda chap stood on a big stage.  He opens the golden envelope, pausing for dramatic effect, then announces with a dazzling, veneered smile….

…”and the winner is…Hannah!”

The orchestra strike up.

The crowd goes completely bonkers and everyone jumps up out of their seats. The standing ovation, clapping and cheering lasts for…erm…let’s say, 4 minutes.

I’ve absolutely no idea why I said 4. It just sounded good.

Hannah then swishes up the steps in her fancy frock, wearing more diamonds than the contents of a Tiffany & Co store.

…but maybe looking a bit scruffy to boot, because, let’s face it, it’s been all of FIVE MINUTES (yep, that’s all it takes…tops!) since she got dolled up.  Well, unkemptness IS one of her endearing attributes, after all!

She takes a moment to compose herself and the crowds’ cheers and applause gradually subside.

It’s so quiet that a pin is heard dropping somewhere…and then she begins…

There’s a Proverb that goes “It takes a village to raise a child”.  Well, we have some really amazing villagers here, some not so good and there’ve been some downright, absolutely dire ones too.

To those villagers, no matter how small their positive contribution, for helping me get to where I am today – Thank you!  You have made a difference. 

There are far too many people to thank individually, but, of course, I need to mention a few of the significant ones and acknowledge the part they’ve played in my life. 

But firstly, to my critics, the starers and those who’ve made stupid remarks. You are, in part, responsible for helping to make my mummy stronger and more determined than she ever imagined she could be.  Your scepticism, speculation and stupidity has been invaluable. *blows a raspberry*

To Cornelia de Lange Syndrome – UP YOURS!  *shakes angry fist*  You haven’t beaten me yet….nor do we ever intend for you to.  Be afraid, be VERY afraid!

(Authors note: Please be advised that, despite being rather fond of the occasional *coughs* expletive, I wouldn’t teach my child to say ‘up yours’ .  So there’s no need to get all uppity and try telling me off.  However, over the years, I confess that I have uttered FAR worse monikers for this damned syndrome that’d make your hair curl! Mind you, IF, one day, the only words that ever came out of her mouth were ‘up yours’ we would most definitely be celebrating and throwing a party…as we say ‘Up North’, ’beggars can’t be choosers!’). 

Anyway, back to her speech….

To Rainbow House, for giving us a glimmer of hope all those years ago…and for so much fun since.  We’d have been lost without you.

To the few who’ve bothered to send an occasional text or email or phoned to ask how I’m doing.  Thank you.  It means a LOT!  Mummy and Daddy don’t forget.

To Aunty Pauline on the school bus, for putting up with me when I nip and bite you.  Sorry!  I DO love you. 

To all the people worldwide who’re following our blog and Facebook page.  Thank you!  The fact that you’ve chosen to travel with us on our bumpy journey and celebrate my achievements with us is just heart-warming and sometimes, quite overwhelming.  Mwah! *blows kisses*

To the Broccoli farmers who’ve supplied me with the ‘Green Stuff’ for all these years – I salute you!

…oh, and thanks go also to the producers of my mummy’s ‘Special Saturday Night Juice’.  I think Daddy calls it Prosecco.

Eternal thanks for all the love, fun and care from my Aunties at Care club who couldn’t possibly have anticipated what they were letting themselves in for *looks away innocently*…but have done (and are doing) a fabulous job.  And to the kids there who love me JUST the way I am and who draw lovely pictures for me.  Hugs and kisses!

To my four beloved Grandparents for their love, prayers, belief and immense pride.  We know this journey has been pretty hard for you all too.  I miss my grandma and grandpa in Heaven, but I’m sure they’re watching over me❤

To Boris (not Johnson, btw!) – My first teddy – with whom (alongside my pacifiers and blanket) I became somewhat overly obsessive, to the point where I couldn’t focus on anything else when you were around.  I don’t know where you went, but I will never forget you.

 (Authors note again:  Fear not, dear reader.  Boris is perfectly safe and still with us…living in exile in the cupboard but desperately in need of a good scrub…shhhhh, it’ll be our little secret, OK? *wink*)

 

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See?  Filthy Boris LIVES…and he’s waving!

 

Thank you to my Teacher and TA’s this year.  For giving me some smashing opportunities to learn, for taking the time to get to know me, for making things fun and much more. 

To the lovely lady that cuts my hair…you are very brave and rather wonderful. 

To the professionals who actually bother(ed) to help me and made a difference…thank you!  To those that were more pre-occupied with ticking their boxes…well…just keep on ticking *shrugs shoulders with ambivalence*

My daddy.  I DO love you.  Thank you for your huggles, your lovely recipes that you and mummy have researched – all intended to help with my tummy problems, for throwing me around and getting me a bit too giddy sometimes because I REALLY love it (despite mummy’s disapproval and despair!).  You’re my best friend, staunch defender and partner in crime.

To my mummy.  Jack of all trades, master of none:  chauffeur, nurse, PA, Teacher, therapist, masseur, chef, stylist, go-to-girl, researcher, campaigner, general ‘fixer’ of things and my all time, forever, ‘Numero Uno’ aficionada.  I may’ve not shown you for years that I had an attachment to you and daddy….or acknowledged that you even existed sometimes.  But, I guess, if I didn’t have this syndrome, things would’ve been very different…I know you understand me far better than anyone.   Just keep calm and carry on. Oh, and get me a drink NOW *clicks fingers*…I’m thirsty!

So, many thanks for this award, it will be treasured!

 

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It took MANY attempts to get a half decent photo *sigh* Thanks also go to Mr Ainscough (pictured) for presenting the award and to Carole – a very patient photographer!

 

Hannah exits the stage gracefully (yeah, right!) to rapturous applause, holding (and NOT lobbing!) her award.

So, my lovelies, that’s almost it for this post.  But let’s wrap it up with a nice (and rather apt) quote I came across recently:

“Around here, we don’t look backwards for very long…we keep moving forward, opening up new doors and doing new things because we’re curious…and curiosity keeps leading us down new paths”

Walt Disney

And so do we, Walt.  So do we!❤

Thanks, as always, for stopping by.

Until next time

Annie xoxo

This post is dedicated to the children and young people who also received their awards on that day…and to their parents.  You’re awesome!

 

Posted in Education, Miscellaneous, Silly stuff, Speech, language and communication, Syndromes/Special Needs, Therapy | Tagged , , , , , , , , | Leave a comment

Research

Or otherwise entitled…

Don’t even try and attempt to get home on the M6 (motorway) on a Friday night

Or…perhaps more obscurely entitled (but all will be revealed)…

FINALLY!!!

 

I’m a great fan of research, especially since Hannah came into our lives.  Although I completely acknowledge that research doesn’t always steer us in the right direction.  Remember that time many years ago when we were told that eating tomatoes gave you cancer?…Hmmm….or that you just HAVE to eat your 5-a-day to stay remotely healthy…but then someone else came along and did some more ‘research’ and said that was probably total poppycock…or that running is really good for you…but someone else then says don’t run, walk instead.

Hmmm indeed.

It’s sometimes hard to know who or what to believe, isn’t it?

But we’ve all got to start from somewhere and, let’s face it, if we don’t have research, then we can’t get facts or conclusions on all manner of things.

Actually, I’d like to do a little bit of ‘research’ myself on…say…*stares dreamily into space*…Daniel Craig or Orlando Bloom or Bradley Cooper or Robert Downey Jnr or….whoops!…sorry, getting a bit carried away there.

I’m being silly, ignore me.

But seriously, given Hannah’s genetic syndrome is so rare, the more that everyone gets to know, the more we can all try to help her and others – both now and, perhaps, hopefully, in the future.

Now don’t get me wrong, I’m not a complete fan of all research.  I do have my limits.  I’m totally not OK with little beagle dogs wearing red lipstick and some fancy face cream (or worse) – all crammed together in a tiny laboratory cage – or any other of God’s living beings for that matter, being subjected to something very nasty, just to benefit us human lot.

No.

That’s SO not ok.

But I’d better stop there on that one and jump straight off my high horse, before I ramble on and not focus on what I actually wanted to tell you about.  As is often the case!

Although, my friend Kevin might disagree on the above (Kevin again – he who thinks I should be in a circus due to my ‘hirsutism’ – the cheeky devil!) and that’s all dependent on what his beagle – fondly and formerly named ‘Fat Bob’ – gets up to, as he’s rather keen on emptying his bladder on their lovely Persian rug (that’s Fat Bob, not Kevin!)…or anywhere else for that matter!  I suspect Fat Bob may’ve been threatened with a little visit to ‘The lab’ on occasion.

Poor old lovely Fat Bob and his weak bladder.

But don’t worry pal, you’re going nowhere.  We’ve got your back.

…and I know your daddy wouldn’t ever do that to you…he probably just mumbles it when he has to get the mop and bucket out.

But anyway, research can play a big, important part in all kinds of stuff, can’t it?

So, when I read that the Cerebra Centre for Neurodevelopmental Disorders (yeah, bit of a mouthful, I know) at the University of Birmingham were asking for people to take part in a research study, I knew just the little person, right here at Broccoli HQ, who could help out.

The study specifically looks at social cognition (cognition – a fancy word for ‘understanding’) in people diagnosed with Cornelia de Lange Syndrome – the syndrome that Hannah’s diagnosed with.

It’s hoped that by examining people’s ability to understand others’ thoughts and intentions, the information gathered will help further understanding of the social and communication development in people with this syndrome, and, maybe, hopefully, find ways of helping improve lives in the future.

So, we just had to offer our services.

After a quick email and…erm…a year later…whoopsy!… (it wasn’t their fault though – I had to cancel as my mum died a couple of days before we were due to take part in 2015) we locked the door at Broccoli HQ, jumped in the car and toddled on down to Birmingham – UK, not Alabama – just in case our lovely friends in the U.S. were wondering.  Hello! *waves enthusiastically*

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Looking gorgeous with my posh frock on and all ready to go…

 

The journey down was fine.  Hannah’s generally quite a good traveller too.  But despite having Sat Nav and receiving brilliant written directions to the University, we got a teensy bit lost.

Doh!

We weren’t far off though.

Honest!

Hannah’s daddy was pretty grumpy by this point and was threatening to emulate ‘Fat Bob’ if we didn’t stop soon.  So we stopped, did what we had to do (you don’t need me to get graphic, do you?) and then lovely Kat came to our rescue, found us floating around in Birmingham and took us where we needed to be i.e. at the University.

Kat (Katherine) is a Doctoral Researcher at the University and she was facilitating the study that day, with the help of Student Doctor Adam who was volunteering his services and has an interest in Hannah’s syndrome and there was Jon too.

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Kat, Hannah and Adam

 

Prior to going down to Birmingham I received lots of really useful written information about what to expect and then arranged a time to speak to Jon on the phone and, together, he and I completed a questionnaire, so the team got some understanding of how we roll here at Broccoli HQ prior to our arrival – By ‘roll’ I mean, how Hannah functions daily etc.  It only took about 45 minutes and was really easy to do.

I’d also completed some other various paper questionnaires, which I provided to Kat on our arrival, alongside consent forms etc. and then it was time to play.

Yeah!

Hannah likes playing!

We weren’t rushed around to get things done either.  Everything was at Hannah’s pace.  Which, to be honest, was quite refreshing.  Us Mama’s and Daddies and Special Children are often ushered hastily here, there and everywhere, with very little time to catch our breaths at many other appointments and such like – so this was nice and relaxed.

…and I think Hannah probably felt that too.

There weren’t any ‘risks’ to this study either – I wouldn’t have put her through it if there were,  No, as far as Hannah was concerned, the day was filled with lots of fun (and a little bit of mayhem on her part – involving attempting to eat birthday candles, bubble mixture and play doh and throw herself backwards off a chair – the usual, daily stuff we’re used to – *sigh*) and fast paced ‘games’ and there was lots (and lots) of smiles and laughter.

Lovely Adam (student doctor) filmed Hannah’s goings on and the observations would then be checked for their accuracy with another researcher.

Everything was done properly and, at any time, we could’ve backed out.  There was no pressure put on us whatsoever and all our questions were answered.  Plus, it was SO nice to be around people who actually have some knowledge and experience of Hannah’s syndrome – they just ‘got’ her and her little idiosyncrasies AND, more importantly, despite this being research, she was treated like a little girl – exactly as she should be and deserves.

Only one of us could accompany Hannah during the studies – but that does actually make sense in order to avoid distractions.  So, as usual, Hannah’s daddy nominated me, whilst he ate a packet of fruit gums, mooched around campus in the sunshine and went to a Museum.  Thanks buddy!

(Although, I must say, I did also enjoy the day and found it really interesting)

Everything Hannah participated in was play-based (but with specific intent)…and she was a TOTAL superstar.  As always, she really tried her hardest in everything she did and threw herself into the task at hand, PLUS she completed everything that was required to complete the study.

Booyah!

So proud of her.

Obviously, being there for several hours, we needed breaks in-between each individual study plus we stopped for lunch too.  And, at times, during each bit, Hannah needed a little ‘run’ around, but thankfully that didn’t affect the study at all.

Now that we’re home, at some point soon, we’re also going to take a saliva sample with a non invasive swab kit.  This will be used for genetic analysis and may identify the genetic variation important in understanding causes and consequences of CdLS.

…although I’m not holding my breath on getting a decent sample…she’s a tricky customer is my kid…and likes to chew EVERYTHING! so those swabs might get a bit chewed up.

Anyway, it’s anticipated the study will be completed by around September 2016, but even though that’s not too far off, don’t let that put you off getting in touch and taking part.  If you or a loved one (no matter what age) is diagnosed with CdLS and you’d like to participate, then please contact Kat (Katherine Ellis) on 0121 414 2855 or email her at KRE061@bham.ac.uk and she’ll send you all the details and/or answer any queries you may have.

Plus, if you have anything additional you’d like to ask us (as participants) about the study, then please feel free to add in the comments box below.

So, to (almost) conclude, a jolly good day was had by all….especially Hannah.  In fact, we hadn’t even reached the motorway to head back to Broccoli HQ before she was snoring contentedly!  And we were more than happy to play our little part in helping to gather information, which could, hopefully, help Hannah and lots of other people in the future.

…although we did have a bit of a nightmare getting back to Broccoli HQ.  Never, EVER, will we try to attempt the M6 motorway again…on a Friday night…AND on the last day of half term!

Arghh!

Nor will we, in desperation and with great angst at ensuring Hannah got to eat something as close to her usual tea time as possible (routines are important for us), stop off at a grotty service station in the future.

Ew!

We’ve learned our lesson.

However, as a little aside to our day, we finally, FINALLY (hip hip hoorah!) got the information that (from Hannah being 2 weeks old) I’d always known….that she displays the characteristics of Autism.  It didn’t come as a shock and wasn’t rocket science to ascertain this, but despite me rattling on about her little idiosyncrasies all these years and everyone rolling their eyes and dismissing me (pah! what do I know, I’m ONLY her mother!), no-one wanted to do anything about it – probably partly because of her syndrome and all its complications, but probably (I suspect) mostly due to the cost implications a diagnosis would have.

So someone listened (yay!) and then observed whilst using the appropriate assessment tools in line with NICE guidelines.

Phew!…it’s nice (and reassuring) to know that there ARE people out there who can be bothered.

Breathe in guys and mind your backs…Special Mama coming through (briskly and determinedly and NEVER to be messed with) with a VERY important piece of information and on a mission to make sure her baby gets ALL the right support she needs.

You have been warned!  Just sayin’ *wink*

N.B. Not everyone with CdLS is on the Spectrum, like Hannah…but may display similar behaviours and more research is needed on this.

So, that’s all for this post my lovelies.

Thanks, as always, for stopping by.

Until next time

Annie xoxo

This post is dedicated to Kat, Adam and Jon…and The Cerebra Centre for Neurodevelopmental Disorders.  Thank you!❤

…and all the other people who took part in this study❤

…and, of course, to Fat Bob! (who is now continent and svelte!) *Mwah*❤

 

Posted in Education, Miscellaneous, Syndromes/Special Needs | Tagged , , , , , | 2 Comments

Heavenly stuff

First off, let me just say how utterly wonderful you lot are (not that you need me to tell you anyway, but just in case you need a little reminder).  Did you see how many of you shared my last two posts?

I. AM. POSITIVELY. OVERWHELMED!

Thank you SO much, my lovelies. I really am extremely grateful❤

…and a little bit giddy too (hmmm, no change there then!)

My stats were BOOMING!

I’m guessing that last post, especially, resonated with many of you and whilst everything I pen (well, type, actually) is completely heartfelt, I simply adored writing it.

I doubt I’ll ever compose anything so emotive again. But hey, I live in hope!  Never say never, eh?

So, I have an hour spare to talk to you…a very precious hour, I’ll have you know.  However, 60 minutes doesn’t give me much time to waffle on, so I’ll have to type quickly.

Right now I have the luxury of sitting alone (I’m alone, hoorah, hoorah, HOORAH!!) in my beloved Cornwall (yep, Cornwall, again!) in a delightful place, in the sunshine, sipping orange juice with ice – I know what you’re thinking -what a rock and roll lifestyle I lead! whilst Hannah and her daddy cause mayhem elsewhere.

I can see the sea glimmering through the ginormous macrocarpa trees.  It’s just heavenly here.  I can’t begin to tell you how much I needed this break away…and this hour alone.

I’ve never done a blog post anywhere other than at Broccoli HQ, and it feels GREAT!…and like what proper grown-up bloggers might do.

Note to self: must do this again sometime.

…although I’d like to press pause on the growing up bit, It’s far too overrated, in my opinion.

Life’s got a bit too taxing and serious-like at Broccoli HQ recently, but fear not, I shan’t burden you with our woes in this post.

So let’s crack on, shall we?…

As I mentioned earlier, I really needed this break.  Really! You’ll probably know by now that Hannah’s my world.  But sometimes, just sometimes, I’m desperate for a bit of a breather. I don’t necessarily mean a break away from her per se, but just a release from the stresses that come with having an extra Special Child….and having no consistent respite support whatsoever.  Don’t worry, you don’t have to get the violins out for me just yet *wink*

It’s not Hannah’s fault, by any means, she’s wonderful…and a joy to be around…although she does inadvertently tire me out rather a lot.

In terms of a break, I don’t mean solely the strain of physically caring and lifting and generally lugging about either, it’s the emotional stuff too – the worry, the planning, the appointments and therapies and liaising with professionals and paperwork, the juggling – and I’m not alluding to being in the Circus here; although my good friend Kevin may disagree on that one.  He’s always said that I’d make a cracking circus act with my unwanted facial hair.

Oh, the cheek of it!

No, the list is endless – and whilst Hannah does go to school – which should, some assume, give me some respite; unless you live it, you can’t possibly grasp the enormity of it all…that all-consuming living-breathing big stress-ball that rumbles around inside of you 24/7, 365.  It all takes its toll.  It’s as if my head (and my heart) need a bit of a metaphorical sabbatical (if that makes sense) so I can just keep the momentum going.  So sometimes, just sometimes, the medicine I need is distance, just to recharge.

So here I am, recharging just a little, far away from Broccoli HQ.

Ahhhhh!

…and, until we move down here permanently, we’re going to plan our year far better than ever – regardless of appointments and ‘stuff’ – and come down here much more regularly.

Holidays don’t alleviate me from doing the usual lifting and carrying and constantly pre-empting things and getting up in the night and all the exact the same stuff that happens at Broccoli HQ (but devoid of all the equipment and ‘things’ that make life a little easier). But nonetheless, life moves at a far slower pace.  No appointments, no having to speak with people or telephones or emails, no missing out on my lunch because I’m more occupied with ensuring Hannah’s eaten properly before ferrying her around to different places…and… It’s. Just. Heavenly.

What’s even more heavenly (and the whole point of this post) is seeing Hannah blissfully happy and relaxed.  The sun is warming her skin (thankfully, it’s not boiling hot) and she has a little glow about her.

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Happy Bunny

 

 

So, finally getting to the point of this post, I want to tell you about something that happened yesterday that made me catch my breath…in a very good way.

Every day, whilst down here, we visit the beach…sometimes even several times a day because we’re only 5 minutes’ walk away. No matter what the weather, no matter what time of year we come, you’ll probably find us there.  We’re lucky that Hannah’s buggy can navigate the sand too…otherwise, we’d be in a bit of a pickle, as some days she’ll refuse to walk on the sand; don’t ask me why, I have absolutely NO idea *scratches head in confusion* and she’s getting far too heavy for me to carry her any distance these days.

So, as the sun was getting ready to set, we went back to visit the beach.  There were very few people around, the tide was gently coming in and there was hardly a breeze. Everything was…well…just perfect really – although I still long for the day when we can go exploring in rock pools together.  Hannah was happy to put her feet on the sand, so I let her toddle around in her own little world and she flapped her hands and made her sing song noises.  She was a very contented little bunny.

As we approached the shoreline, she noticed the gentle ripples of the water gradually approaching.  She noticed…hoorah! The water was relatively warm and so we stood there in the water, holding hands (she mostly doesn’t ‘do’ holding hands, so this deserves another ‘hoorah’!) we faced the horizon, just she and I, for a moment.  I just wanted time to stand still.  But then the moment had gone and Hannah wanted to step farther into the shallow water and suddenly, being the spontaneous little girl that she is, she laughed, such a hearty laugh, pulled away from me and darted away from the approaching wave and onto dry land.  Well, when I say ‘wave’, it was about an inch high, so I’m not sure whether that constitutes a ‘wave’ or not.

I didn’t have much choice but to let go of her hand as she pulled away, but I (no doubt) emulated a working sheepdog with a precious flock – making sure she didn’t stray from arm’s length. Hannah roared with laughter as she ‘ran’ (ish) into the water, waited for a ‘wave’ to come, pre-empted its approach, then ‘ran’ away from it – JUST like any other average child might do.

Backwards and forwards she went, laughing until it made her cough and she went all red in the head.

It really did make me catch my breath…and I must confess that I got a bit misty eyed.

I was one proud mama.

Really proud.

…well, not too proud of her coughing and going all red in the head, but you get my drift.

Not only did she enjoy having her feet in the water, she was able to anticipate exactly when a wave was coming and then run away from it….AND she found it funny.

BOOYAH!

Blissful, heavenly stuff to observe and be a part of…until she stumbled (as is often the case, but thankfully not face first this time!), fell into the water, bottom first and then ended up going back to our house with a nappy so soaked and swollen she looked like a little sumo wrestler from the waist down.

Note to self: take swim nappies next time!

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Cornwall❤

 

So, there you have it.  I completely get that for some ‘average’ parents, this is no ‘biggy’, but for us, it’s massive.  I never thought we’d see the day when something like this would happen and, even if it never happens again, I’ll treasure that moment forever.

I could’ve just said, she was happy when she ran into the sea and ran out again, this’d never happened before and she fell into the water…but that would’ve been a remarkably short post for me and that’s not how I roll.  Sorry about that!

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So, that’s all for now my lovelies. I’ve slightly exceeded my hour (whoops!), my orange juice with ice has gone and I’m now off to the beach again with the kid.

Thanks, as always, for stopping by.

I hope you’re enjoying some sunshine too.

Until next time

Annie xoxo

This post is dedicated to Cindy and her beautiful family. It was SO lovely to meet you all…and I really do hope we meet again. xx

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Posted in Miscellaneous | Tagged , , , , , , , , , | 4 Comments

I see YOU…

Or otherwise entitled…

For my fellow Special Mama’s (but please don’t let that stop you reading on)

I see you 2

Sometimes, as a Special Mama, it’s very easy to feel invisible. Sometimes, it’s like you’ve lost your identity and the person you were, before life changed forever.

You may now never get the opportunity to tut in scorn (but inwardly smile, because you know you’ve still ‘got it’) at builders or tradesmen in vans who whistle as you go by. Well, I don’t anymore, that’s for sure. Let me know if you do and I’ll be proper jealous!

Sometimes, or often, in fact, you may not feel listened to or understood.

Occasionally, you might not remember the last time you laughed.

You rarely get the opportunity to get dressed up – jeans and comfy clothes for lifting and carrying and generally messing about on the floor are your regular attire. Shopping for nice clothes aren’t on the agenda – why bother? – They’ll only get ‘mucked up’ lugging wheelchairs and special prams in and out of the car…and you rarely go anywhere nice to get dressed up anyway. Hair that’s easily tied in a ponytail is typical, because trips to the hairdresser aren’t as often as you’d like.

You’re constantly juggling life…and sometimes it seems relentless and unproductive and downright stressful and you’re exhausted and have no time for yourself and, it’s just…well…just very, very rubbish sometimes.

I’m not selling this Special World of ours very well, am I?

I’d never get a job in sales or promotions, would I?

Ah well.

But equally, there are truly beautiful, magical times in our lives.

Like times when your child does something for the first time that you never in a million years imagined they would do:

That first hug.

First eye contact.

First steps.

First and, perhaps, only word.

First smile *melt*

The first time your child is able to hold their head up independently or breathe on their own or swallow.

Huge, MASSIVE things in our world.

All things that anyone else might just take for granted and expect that it’ll just happen when the milestone books tell them it will.

But we don’t. We don’t take anything for granted. We cherish those times, because time is extremely precious in our world. We celebrate those times. We mark them down in diaries and share our joy on social media or with anyone who’ll listen.

But sometimes, as Special Mama’s, we forget about ourselves. Our identities may get swallowed up…and, because we have more important things to contend with, we sometimes inadvertently allow that to happen.

For instance; when we answer the phone (and boy, do we get LOTS of calls and correspondence) and the caller asks “Is that Hannah’s mummy?” (obviously, add your own child’s name there, not everyone’s called Hannah), we say “Yes, it is”. When actually, what we could say is…”Yes, this is Annie” (again, obviously, put your own name there, otherwise, they’ll think they’ve got the wrong number and hang up!). It’s not being impolite. Your job as a Mama is immensely important, but so is your name, so is your OWN, individual and unique identity.

So I’m here to remind you…Yes, you, reading this (if you’re a Special Mama, that is, obviously!)…that I see YOU.

You’re possibly the cog that keeps the wheels turning in your family. You may have a wingman (or wingwoman) – a partner, husband, mother, friend or whoever, who’s there by your shoulder, providing invaluable support. But ultimately, YOU are the professional in your individual child’s needs. Probably no-one else knows what you know…and sometimes, it can feel a little lonely.

You’re a Special Mummy. But in addition, the other daily hats you need to wear include being a teacher, therapist, nurse, PA, driver and SO much more.

But you’re also an individual in your own right…and a precious one at that.

I know that you’ve probably (and may still) trawl the internet looking for answers.

I bet you’ve read and can recite and have ascertained everything there possibly is to know about your child’s condition or are still searching for those answers.

I know you’ve sat by your child’s hospital bed and probably pleaded to a Higher Being for help. I know you’ve anxiously paced hospital corridors so much you’ve worn a groove in the flooring. I know you can carry out some medical procedures far more proficiently than someone with a medical qualification.

I know you have a constant battle fighting for the services and equipment in order to meet your child’s needs and you’ll have times where you’re wading through a mire of endless red tape, and that, in itself, is exhausting.

I see YOU…

I see a mum who wants the best for your child, no matter the challenges and sleepless nights and worries and heartbreak it brings for you.

I see a woman, trying to be all things to all people, stretching herself to capacity.

I see the mum trying to do her very best navigating her way towards an unknown destination.

The mummy who relentlessly carries out the same tasks and therapies day in and day out, because one day, something good may come of it.

Sometimes I see someone who’s so exhausted that it’s hard to function. But there’s no lying in bed in the mornings (or even through the night), you have to get up, even if you don’t feel like you’ve the emotional and physical energy to do so. Because someone, extremely vulnerable, is totally dependent on you.

I see someone who puts their child’s needs above their own and anyone else’s.

I see a woman who just wished that time would stand still…for lots of reasons.

I see a group of intelligent, articulate, empathic women; not sisters by blood – much deeper than that – who just ‘get’ each other. They cry together, they laugh together, they have a jolly good old moan together, they discuss naked footballers together (sorry, private joke there, but they know who they are…dirty, dirty girls!…nothing to do with me, honest!), they celebrate together and consult with each other and pool their knowledge.

I see you, soothing your child when they’re going through something you feel utterly powerless to control. Something that you wished, with all your heart, that it was happening to you instead. I know you’d take away the challenges and pain in a heartbeat if you could.

I see you worrying for the future and what’ll happen when you’re not around.

I see you in a waiting room, looking pale and anxious, trying to hold it together.

I see your passion in sharing your knowledge and experiences and educating people about your child’s condition through your blogs and how this affects your lives. I see you striving for inclusion in a world that isn’t often very accepting.

I see and listen to you discussing the trials and tribulations of friends or family members, who simply just don’t understand and dip in and out of your life when it suits them or who just don’t bother to send even an occasional text and ask how things are – out of sight, out of mind!. In addition, there’s the equally tiresome people who judge, who stare, who make comments that are hurtful. They all add to the angst and stresses of your life.

I see a mum who tries hard to comfort and explain to her child why they can’t do the things their peers may do.

I see a woman trying hard to raise enough money each year to pay for private therapies and equipment, because there’s nothing forthcoming from our diminishing NHS.

I see this amazing, creative woman, constantly thinking outside the ‘box’.

I see you and what you do. However, there’s SO much more to YOU and that’s easy to forget sometimes…

I see your quirky (and sometimes wicked) sense of humour…your ability to laugh even at the most frustrating of things – like services not being available because of cost implications or incompetent or rude people who try to belittle you…but who often fail!…YOU GO GIRL!!! *High five*

I see YOU.

You – a remarkable, funny, beautiful, strong, capable individual in her own right.

Someone who has history. The girl who laughed and played and studied and maybe got a career. Who may’ve gone to College or University, got drunk, lost her shoes somewhere, went skinny dipping with a beautiful Cypriot boy she hardly knew, gazed up at the stars on a warm clear night, fell in love, fell out of love, flirted and played and danced carelessly in bare feet and was utterly, utterly stupid sometimes.

I see a sensitive, loving, caring woman whose hard exterior carefully conceals the constant hurting inside. That hurt that she daren’t allow others a glimpse of, because if she does, she’ll show her fragility. And a woman who has wept alone in the shower for her baby and her situation. But every day, she gets up, gets dressed and faces the world head on.

Remember that carefree, sexy young woman with shiny skin and glossy hair who thought the world was her oyster? That was you, that still IS you…but you’re older (and perhaps, hopefully, a little wiser) and carrying some battle scars – emotionally and physically.   Wear them with pride, my love. You got through it. You’re tougher than you think.

Darling, don’t ever forget who you are and who you were and who you can be…even though it’s easy sometimes to forget and lose ourselves in this world of ours. Please don’t ever say “Oh, I’m just a stay at home mom” or “I only work part time”. There’s no just or only about it. You have been blessed with the most important and full time role in the world.

We’re shaped by our experiences and the people who cross our paths – the good, the not so good and the idiots. Learn from them.

I want you to know that I admire you…and sometimes, even if I don’t say it, I (and many others around you) might even love you just for being YOU.

This journey we’re on is a tough one. Don’t ever be afraid of saying that – even if no-one wants to listen. No-one can imagine what it’d be like from reading a book or observing 15 minutes of your life or getting a degree or having a professional title unless you’ve lived it and felt it in your heart – 24/7, 365 days a year, just like you do.

Be proud of who you are and your achievements and your courage and tenacity.

And even on the darkest of days, just remind yourself to keep going.

Have faith.

This day will pass.

You’ve got this.

…but if sometimes you feel you haven’t, reach out to us…we’ll catch you.

 

So, that’s all for this post, my lovelies.

Thanks, as always, for stopping by.

Until next time.

Annie xoxo

This post is dedicated to my fellow Special Mamas.

Oh, but just before I go…a message to Brazil…I see YOU too…but for a very different reason – on my stats.  I’m watching!!!

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