Washing-up gloves and plastic chickens

I believe that kids are kids, regardless of whether they have additional needs or not.  But there’ve been times when I’ve been a bit curious as to how other people, especially other parents of average, non disabled children, perceive Hannah.

On a few occasions, I’ve seen them clutch their child closely whilst we pass by.  Maybe it’s out of courtesy – making way for a mama pushing her child in a wheelchair or special buggy.

Maybe it’s not.

…it’s the accompanying ‘look’ that’s the giveaway – as if Hannah may, somehow, infect their beloved poppets if they enter our personal space *rolls eyes* Sadly, I know of other parents who can testify to having similar feelings and experiences.

But thankfully it’s not happened often.  Nevertheless, when it has it’s smarted – a bit like lemon juice on a paper cut.

I wonder whether they presume just by looking at her singing away in her buggy, that Hannah is completely dissimilar to their own child?  Or that she doesn’t display any of the typical traits and glorious idiosyncrasies that any other child without additional needs might?  Maybe.  Maybe not.  I’d have to ask them.

Well, my lovely reader, allow me an attempt to dispel some possible assumptions…because, in many ways, Hannah does behave similarly to other kids. Whilst she’s poles apart from her mainstream peers, she’s actually not that much different to a little person you might know…or, in fact, maybe how you were as a child.

So, just for a moment let’s forget about Hannah’s chronological age (7, but she functions like a little person aged around 6 months to two years) and have a look at her current take on life:

 

Why have a dog and bark yourself?:

Why bother doing anything at all if you can get away with not doing something?

Hannah’s ‘servant’ pecking order is…

Number 1 servant – mummy

Number 2 servant – daddy

Number 3 servants – grandma/grandad

Number 4 servant – anyone else

 

If I don’t look in your direction, you won’t know I’m doing it:

Need I say more?

 

Selective hearing loss:

Hannah was once diagnosed with hearing loss.  Now, it appears her difficulties lie in processing the information that she hears.

Ask Hannah to do something she doesn’t want to do and she’ll totally ignore you.  Try and discreetly open a packet of crisps (that’s chips to our lovely friends across the pond “Hello!” *waves vigorously*) and she’ll hear you a mile off!

You WILL surrender the crisps!

 

Mess is best:

Yes, in Hannah’s world, there is no such thing as tidy and clean:

 

Baths are for playing in, not washing.

 

Hair is for pulling, rubbing on something until knotty, massaging food into.

 

Food, if deemed unacceptable, is thrown on the floor.

 

Yoghurt is for smearing on all glass surfaces…and the TV.

 

Drinks are for pouring on your head/down your top.  Ribena is a rather splendid liquid for spitting on white walls *sigh*

 

Water based paint is for tasting prior to, during or after the application of it on paper.  In fact, why bother with paper, when you can just lick the paint off the brush?  (btw, what DO they make water based paints from?…it’s allegedly safe…but it doesn’t come out of clothes very easily…if at all! So who knows what it does to the insides of little people! *looks concerned*)

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Toys are for scattering over all available floor space. Tidying up during waking hours is futile.

 

 

Silence is SO not golden

Aside from her verbal stimming, sing song noises, raspberry blowing and teeth grinding, toys (or anything else, really) must be bashed repeatedly and with as much force as possible…or thrown…or both.

Broccoli HQ is rarely a tranquil environment!

 

Social etiquette

Doesn’t exist.

Strangers are often tasted (erm, okay, bitten).  Attempts will be made to remove clothes whilst out and about. Fingers are placed up noses (anyone’s), farts will be followed by much hilarity.  Runny noses are often wiped on clothes (again, anyone’s) before a tissue can be sourced.

 

Clothing

Hats and gloves are rejected – no matter the temperature outside. Shoes are kicked off…repeatedly.  The hood of coats are currently to be worn only indoors, covering the face; small giggly person shall then stumble around Broccoli HQ unable to see. This is, seemingly, an excellent game.  Frocks are for pulling over your head and having a moment.

 

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…just having a moment

 

 

“No”:

No shall be ignored.  There is no such word as “No”, apparently.

 

What’s mine is mine…and what’s yours is mine:

This includes food.  Your food will be pawed.  You will be stared into submission.

 

Telephones/communication/IT etc:

Adult people should not be allowed to speak to each other.  Ever.  Tactics are implemented – usually involving plastic missiles (toys) or quietness/covert behaviour.  Grown-ups shall not complete any important looking work whilst in the vicinity of a small person – especially on a computer.  Laptops will be touched with sticky paws, keyboards will be pounced upon.  Work may be lost.  Tough.

 

Plans and time:

Plans will be scuppered periodically.  Obscure illnesses requiring medical attention are particularly effective prior to any holiday, special occasion or when mummy wants to meet up with someone or has something really, really, REALLY important to do.  Kids seem to know the most effective time to be poorly!

There is no such thing as time.  No matter how much planning and preparation is made, grown-ups will be made to be late…for everything.

 

Tiredness:

Fatigue must be accompanied by a mahoosive spurt of energy, general madness and potentially dangerous shenanigans…or tears…or all of the above.

 

Danger:

Like “no”, the word or concept doesn’t exist.

Repeated attempts to bite the cord of the hairdryer whilst mummy tries to dry small persons hair shall continue until further notice.

Attempts must be made to touch everything. This is the law.

 

Furniture:

Sofas are not for sitting on.  Lolling, upside down, however, is wholly acceptable.  They may also be bounced upon in a precarious manner.  Toys are to be stuffed underneath…the servants are required to retrieve them on demand.

Beds are also rather bouncy.

 

Fixations on inanimate objects:

Blankets, dolls, teddies, coats, specific pieces of duplo – you name it, it’s probably been cherished, walked about with, bitten, pushed up the nose, placed in the bath and/or taken to bed.

Currently, we have a fixation on the washing up gloves, a plastic chicken and a coat.  This is subject to change anytime soon.

 

See?  Perhaps not so different after all? She’s a unique little individual in her own right.  One of a kind, with her own thoughts and feelings and little quirks.  But in many ways she’s not completely dissimilar in some behaviours to kids with or without additional needs.  Not so different from kids who can or can’t communicate.  Not so different from kids who can or can’t move their limbs. Not so different from how you or I probably were in our childhood.

…and she’s certainly not contagious…although her smile might be!

 

But you know what my most favourite parts of Hannah’s attitude to life are?

 

That it must be embraced.  Every day, hour, minute ought to be filled with as much fun and curiosity and exploration as possible.

It doesn’t matter to Hannah what she or you look like, what clothes you wear, what car you drive, how big your house is, what colour of skin you have, whether you can walk or talk or move.  Hannah will still love and accept you, just the way you are.

And whilst us grown-ups run around all day, being busy and getting stressed and worrying about what’s happening in this changing world, wouldn’t it be just fab if, only for a little while, we could take a leaf out of our kids’ books?  To just ‘be’ in the present moment. To loll on the sofa, with knotty hair and blue paint stained teeth, eating crisps whilst cuddling a plastic chicken and a washing up glove.

Yeah, I think so!

 

So my lovelies, I guess that’s all for now

Thanks, as always, for stopping by

Until next time

Annie   xoxo

 

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The sorting hat, moody cows, celebrities and Hannah goes surfing

Hello my lovelies!

I hope you had a fantastic Christmas and here’s to 2017 being a wonderful, healthy, happy one for you all and for your loved ones too.

Hey, have a guess where we’ve been?

Yep, you guessed it (probably) and IT.  WAS.  PERFECT.

Tbh, unusually, I was a little reticent to go as – as you’ll probably know if you follow us on facebook – Hannah’s been having problems with her teeth and is due to go into hospital at some point soon for an operation.  But, thankfully, she was okay and had a rather splendid time, I think/hope.

The weather was kind – mild with the exception of one blustery, wet day.  We managed to have a rest (Oh, I SO needed it) and we just schlepped around at our leisure, visiting places, met up with friends, looked at houses *grins* and spent time on the beach.  Lovely jubbly!  At times, when she was calm, we managed to get Hannah to sit on a regular, grown up chair to eat – rather than using her Go To seat (a fab specialist seating aid for kids with additional needs)…yay!

It all went far too fast and I’m counting down the days until we’ll be there again.

…in our Cornish Broccoli HQ.

So, here’s a little summary of what Hannah got up to…

 

On Christmas Eve, Hannah met two celebrities – Helen Glover: British and Olympic professional rower (ranked number 1 in the world..oooh!) with her lovely new husband – Steve Backshall: naturalist, TV presenter, Strictly Come Dancing competitor and an utterly DE-LICI-OUS specimen of manliness.

Ding Dong!

I mean, come on, have you seen those muscles?!!? *erratically fans flushing face*  (don’t tell Hannah’s daddy I said that, though…shhh…it’ll be our little secret, okay?).

Anyway *composes self*, they were both SO nice…and Helen didn’t flinch when Hannah attempted to bite her fingers.  Thankfully, we left her completely intact…phew!

 

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Three celebrities

 

We also went to church on Christmas Eve…and Hannah snoozed (and snored!) all the way through the children’s nativity service.  Typical.  *sighs*.

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We visited our friends who own an organic beef farm.  Hannah was captivated with a calf and spontaneously tried to stroke it *melt*…although I was a little more preoccupied with one of the cows (not the mama and apparently usually quite placid) looking rather menacing and moody whilst sharpening its MAHOOSIVE horns on the side of the barn door.   Hannah and her daddy are pescatarians…but judging by that glint in its eyes, I’m convinced it knew I was a carnivore!  *quickly googles vegetarianism*  So whilst Hannah was preoccupied, I was formulating our nearest escape route and deliberating on whether I could manage a Fosbury flop over the fence, with Hannah tucked under my arm…and in my wellies!…should the need arise.

 

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I had one eye on the camera, the other on the moody cow to my left!

 

We visited the Cathedral and lit candles, like we always do, for our loved ones no longer with us…

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…and then there was the sorting hat.  Oh, WHAT a reaction we had on facebook with that one!  (thank you!!! ❤ )

You see, Hannah’s daddy took his new hat away with him.  He loves it.  But it’s not a run-of-the-mill, average hat that you can get off the high street as he isn’t a run-of-the-mill kind of bloke, really.  I’ve subsequently named it the ‘sorting hat’ – like in Hogwarts, from the Harry Potter films.  Anyway, one day we decided to walk the Camel Trail.  Pre-Hannah, we may’ve cycled the routes, but this time we walked several miles with Hannah, who was contentedly singing away in her special buggy.  The trail is incredibly popular – even at this time of year – and so naturally we came across lots of people.  Now, if you didn’t read this specific facebook post, I’ll have to explain a little here….we’re quite used to people looking over/staring at Hannah when we’re out and about. Ordinarily, we’re not that fazed anymore.  We’ve come to expect it.  But sometimes, just every now and again, we get a little irked – all dependent on people’s reactions.  However, with Hannah’s daddy wearing the ‘sorting hat’ not one person stared at her.  NOT ONE!  Honestly!  I kid you not!  They were FAR too preoccupied gawping at the hat instead.

It was extraordinary.

…and rather refreshing!

…so if you’re a Special Parent and are getting a bit tired of the starers…just get a sorting hat.  IT TOTALLY WORKS 🙂

And Hannah’s daddy was so chuffed at the reaction on facebook, he’s suggested it be an occasional feature on there.  It made his day.  Bless! He doesn’t get out much.

 

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Hannah, daddy and the sorting hat

 

We welcomed the New Year in and watched an amazing fireworks display…although Hannah wasn’t too keen as the spectacle reached its optimum.

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We went on the beach most days.

I love taking Hannah there.  She can safely wander around to her hearts content.  She’s more relaxed there than anywhere!

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Awh!

 

We ate lovely food…LOTS of lovely food.  Too much lovely food, actually *burps* Pardon me! *puts hand to mouth then googles gym membership*

 

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Having a bit of a sing song after lunch!

 

And Hannah went surfing.

Well, sort of surfing – but without the wet suit and the surf board.  So, technically not surfing at all, I suppose.

If you’ve been with us a while, you’ll know that last year I wrote a blog post about Hannah noticing the waves approaching the shore and trying to run away from them (heavenly).  I clung onto her as best I could, although she managed to break free from me at one point.  But this time I decided to just stay close, give her a little bit of freedom, not hold onto her, not do my usual ‘helicopter mama’ impression *anxious gulp*.  Over her plethora of clothing, she wore her waterproof suit (haha, yeah, right!) and her wellies – which she very much resents wearing.  As we approached the shore, Hannah noticed the waves and just stood there, watching the water gently flow over her feet.  She loved it…and I loved watching her having fun, often in her own little world – I’d love to know what’s going on in her head!  But then, she made two tiny steps further into the water and turned her back to the sea. A ‘wave’ (actually, more like a large ripple) caught her unawares, knocked her off her (typically doddery) feet, causing her to fall backwards, and was subsequently swept swiftly back onto dry land.  Fleetingly, I was worried about her reaction, however, Hannah being the true adventurer/slightly feral child that she is, absolutely LOVED it, squealed with delight and once I’d scooped her up, made attempts to go back into the water.

…which was SO not going to happen, as a quick dash home to strip off the now-not-so-waterproof-suit and 300 kilos (slight exaggeration) of saturated nappy, a warm bath and removal of half a ton of sand (again, slightly exaggerated there) out of her ears was required.

I shared the post with friends. Saying…”It started like this”…

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“…and ended like this”

…with the hashtag (and excuse my language here, but she was!)

#pissedwetthrough

(but also deliriously happy)

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So, I guess that’s all for now my lovelies.

Thanks, as always, for stopping by.

Until next time

Annie   xoxo

This post is dedicated to the Cornish Pasty…om nom!

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Ta!

 

Or, otherwise entitled…

 

Blimey, that’s come around a bit quick!

Ta!.jpg

 

Well, it’ll very shortly be our third anniversary!

It’s been three whole years since I started this blog.

THREE.  WHOLE.  YEARS!

Fancy that! Who’d have thought, eh?

I could never have anticipated when I first started writing that we’d still be floating around in the blogosphere; with me waffling on (as I do!)…and maybe having a bit of a rant from time to time (soz about that! *looks sheepish*) and Hannah just being…well…utterly fabulous (and still rather scruffy) and surprising us all with her antics:  like stealing from baby Jesus, to swallowing teeth, to saying ‘Hello’ for the first time…to well…everything, really.

So, before t’internet goes a bit wobbly – you know, like it does at Christmas – and you all get tucked into your turkey and whatnot, I wanted to say ‘Ta’ (thank you…thanks SO very, very much) to you ALL for your support:  whether you’ve just recently joined us, been with us for a while or even since those first words were published – through the blog (wordpress and email followers) and through our likers and followers on Facebook, Instagram and Twitter too.  We’re only a couple of hundred views short of reaching 24,000 now and you’ve visited us from across the world…even the Northern Mariana Islands (I had to look you up guys, sorry…I thought my geography was ok…clearly it wasn’t!).

Your support over these last three years has been absolutely incredible.  I really do mean that!

However, saying thank you just doesn’t feel ‘enough’ really.

But ‘Ta’s’ all I can offer right now (yeah, stingy, eh? apologies) but, just know it’s heartfelt.

Now, it might sound a bit corny, but I truly am humbled and honoured that you’ve joined us…AND even stayed with us – despite my ramblings!  For some of you it’s probably because you have a child with the same syndrome as Hannah; maybe others, because you have a child with additional needs.  You may know Hannah or I personally (sorry about that! *winks*), you may not know us…or are friends of friends or people we’ve met on this journey of ours, or even a professional interested in learning more about real life with a rare child with additional needs….and maybe you’ve just stumbled across us via The Mighty, Love That Max, Same But Different Project or somewhere else.

Nevertheless, whoever you are and wherever you are in the world, just know that you’re welcome here, anytime….and I hope you’ve got something/anything out of reading my stuff…but mostly a smile (tbh, I’m getting a bit fed up of making people cry! That’s SO not my intention…AT ALL..honest!).  From the onset, I pledged I’d write from the heart and that’s what I’ve done and aim to continue to do, but it’s also important to share the other stuff…the hope, the worry, the amazingly good times, the perhaps not so good times.  Because that’s life, isn’t it?  For all of us.

I can’t begin to tell you how touched I’ve been when you’ve celebrated Hannah’s achievements with me and your response when I heard her say her first word this year absolutely BLEW ME AWAY!  It was totally and utterly bonkers.  Thank you SO very, very (VERY) much. I’ll never forget that.

Ordinarily, the average parent may not blog or post on facebook like I do, but those achievements in our world are mahoosive and worth celebrating.

Anyway, here’s hoping I get the chance to share more of that stuff with you sometime…as long as any new words aren’t expletives! *gulps*

As you may already know, I set up this blog for several reasons – one of them being for cathartic purposes – mission accomplished! *does celebratory jig* and also, for other people just starting out on their own journeys with a loved one with CdLS (Cornelia de Lange syndrome) – so that they didn’t feel so alone, just like I did at the beginning.  And, I’m pretty sure I’ve achieved that too! *does backwards moon walk AND fist pump*.

…although I never thought I’d still be rambling on for this long.

But I am 🙂

However, through this blog, I also hope that I’m helping to change people’s perceptions a little.  That when they meet a child or adult with additional needs, they see a person first – not a disability, not a diagnosis or whatever.  Just someone different to themselves…gloriously different, just like we ALL are….but in many ways, not dissimilar.

So, that’s all for now, my lovelies.

Thanks (again) as always for stopping by.

Until next time…and wishing you a happy, healthy Christmas ❤

Annie  xoxo

 

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‘Tis the season to be jolly

Or, otherwise more aptly entitled…

 

Spare a thought

 

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Credit: Photofunia

 

I wasn’t really sure how to start this post, so I guess I’ll just ramble on for a bit (nothing new there then, eh?) and hope it makes sense.

So, if you weren’t already aware, Christmas is almost upon us.

For many people who ‘celebrate’ Christmas, it’s a time of festivity: getting together, eating, drinking, complaining about the sprouts, watching a TV Soap with bated breath and wondering who’s going to get clobbered around the head and ‘snuff it’ (die) this year, giving and receiving presents and, maybe, just maybe, even celebrating Christ’s birth!

Fancy that, eh?

It may be a day of consumption, indulgence, merriment and slobbing in front of the telly, doing absolutely nothing, other than perhaps reaching for the Rennies when the indigestion or heartburn gets too much – once all the cooking and washing up’s been done, of course.

But… (there just has to be a ‘but’ with me, doesn’t there?)…

For others, it may well be a day like any other, or a day tinged with sadness or unbearable challenges: like displacement from their country of origin or separation from family members, famine, warfare, domestic violence, sexual abuse, homelessness, terminal illness, disability, loneliness, suicide, grieving for the loss of a loved one.

I won’t go on.  I’m sure you get my drift.

But despite others’ tragedy and adversity, life still goes on for the rest of us, doesn’t it?…because it has to…because we want it to.  Because, well, that’s just what life does…until the time comes when it doesn’t go on, of course.

I guess, since Hannah came into the world, I’ve had a much more heightened awareness of and experienced the challenges (and heartache) that caring for a child with additional needs brings – and the fragility of life too!

But we also get on with things.  We’re fortunate that we can go on holidays and trips. We celebrate birthdays and Christmas, just like lots of other people do…often with a twist…there’s probably always a plot twist!

Because far more thought, preparation and planning has to go into pretty much everything.  Spontaneity goes out of the window.  Stuff crops up and plans may have to be cancelled or amended.

I’m sure my fellow special families will concur!

But I/we couldn’t expect anyone else to know that or understand any of it, unless they live it.  Unless they walked in our shoes. Experienced our life.

And, really, why should they anyway? It doesn’t affect them.

So, yeah, Christmas – as I mentioned in my last post, may be different for us compared to the majority.  But we adapt.  We try and make the most of it.

And for many special families, there’ll most probably be the turkey and tinsel and presents and merriment and whatnot.  But life doesn’t just stop like the average familys might do for a few days.  The festive season probably won’t give our families a breather or maybe the luxury of lying on the sofa, watching the telly all day. There may also be the same, often time-consuming, repetitive stuff or maybe new things thrown into the loop: peg or NG feeds, blended diets, aspirating, flushing out, nappy changes, stretches, therapy, positioning, medication, keeping a child in meltdown safe, carefully timing how long a seizure lasts and contemplating whether to dial 999, visits from community nurses, dashes to hospital or living temporarily in the hospice…waiting, catheterising, applying distraction techniques during a bout of self-harm, putting a brave face on for everyone after a new, heart-breaking diagnosis.

This list is not exhaustive, btw!

None of that stuff just stops simply because it’s Christmas day or Boxing Day or any other day, you know?  Most of it won’t wait until the chocolate orange or Quality Street have been guzzled and the Queen’s done her speech, James Bond has drunk another martini or the Grinch has made friends with the residents of Whoville.  It all must still happen at the time it’s supposed to happen, no matter how long it takes.

Tis the season to be jolly? Well, actually, every season ought to be jolly, really, ideally, don’t you think?  However, whilst you’re tucking into your turkey and pigs in blankets (we don’t ‘do’ turkey at Broccoli HQ, but living with 2 pescatarians, I get the little piggy’s in blankets all to myself…yum!) or goose or nut roast or whatever, please spare a thought, a brief second at the very least, for those having a less easier, perhaps more challenging day than you this year;  for those who wished the day would be over and done with, for those whose hearts are heavy, for those who never made it to today.

Hold your loved ones and your babies a little closer, because you have the luxury of that this Christmas, because they’re here with you this year.

Please, try and not take that for granted.

…and maybe, give a little bit of thanks too!

 

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Credit: Photofunia

 

So, I guess that’s all for now, my lovelies.

Just in case I don’t get around to writing any new posts for a bit, we wish you and yours a truly wonderful, peaceful Christmas and a happy and incredibly healthy 2017.

Until next time and with our love…

Annie & Hannah xoxo

 

This post is dedicated to CC, ED and RD – beautiful boy

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Haven’t the foggiest!

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Ah, Christmas.  Love it or loathe it my darlings, it’s fast approaching…

Very shortly, the supermarkets will be crammed with preoccupied looking people, frantically stuffing their trolleys to the brim – as if preparing for a food shortage. Well, let’s face it, many of the shops in the UK will be closed for ONE WHOLE DAY!!!

*gasps*

Nuts, not once consumed throughout the rest of the year, will be purchased and lovingly displayed in fake crystal bowls, alongside the obligatory quality street/after eight combo, just for the visitors.

Shoppers will jostle in damp town centres all across the land, traipsing from shop to shop, searching for the perfect present. Credit cards melting from overuse.

Synthetic Christmas trees that’ve lived in the loft for 11 months will be dusted off and brought downstairs by a huffing and puffing patriarch.

Neighbours will exert competitive streaks with their outdoor Christmas decorations and housing estates countrywide will display an overabundance of comparable prancing reindeer type creations from The Range or B&Q (other stores are available, btw).  The light pollution will be remarkable!

Mums blood pressure will be sky high as she protests there won’t be enough food to go round on Christmas day…although there’ll probably be enough to feed the whole street!

Still, we can chuck it all on land fill sites if it doesn’t get eaten, eh?

…and, of course, we mustn’t forget (my all-time favourite!) the half price sofa we ought to have delivered before the 25th

Oh, what joy!

(I’m being ironic there, btw)

Poor baby Jesus hardly gets a look in at Christmas these days!

Anyway, sorry, I’ll try and stop waffling on (as usual) and get on with the post….

Where was I?  Ah yes, not having the foggiest…

So, before Hannah came along, I imagined Christmas at Broccoli HQ significantly different than it is:

Putting out the homemade mince pies on Christmas Eve for Father Christmas.

Watching contentedly as presents were opened – the ones specified in a handwritten letter to Santa.

Scripts recited.  Nativity plays attended.

Decorating the Christmas tree together.

Blah, blah…blah.  You know, the usual stuff.  All moments worthy of sharing on social media and putting in the album.  All heart-warming.  All lovely.

But there was (seemingly) a plot twist in life destined for us…

There’d be no Christmas tree.  Hannah would only pull it over and get herself squashed…or eat it…or both!

No scripts would be recited.

Hannah doesn’t have an inkling who the big fella with a white beard is.  He’s just some scary bloke who invades her space.

I won’t go on.  Otherwise, it’ll all sound a bit miserable and that’s not my intention.

So, life/Christmas is considerably different for us…and probably for thousands of other families just like ours too.

And sometimes, significant days like Yuletide (and birthdays) throw up little conundrums that generally tug at the heart a bit too much.

I suppose it probably all started on the build up to Hannah’s first Christmas…

“What are you buying her?” they asked.  “Erm…I’m not sure” I replied.  Because, really, what could I have bought her?  She didn’t want anything, she certainly didn’t need anything ‘material’ that’s for sure.  She had everything a baby her age probably would have had (and more), but showed little interest in anything.

What she really needed then was much more important than ‘stuff’.  She needed to be able sit up independently, to have her cleft palate repaired, to get rid of that damned naso-gastric tube, to not suffer from her reflux…the list went on.

You can’t find any of that in the Argos catalogue…or even in John Lewis.  I KNOW, shocking, ain’t it?!

But, naturally, I bought her presents.  Too many, in fact.  And so, on our first Christmas morning together, we all huddled in bed, surrounded by her presents; the presents she didn’t look at, didn’t show any interest in, once we’d opened them for her.

It was heart-breaking.  Truly, it was.  I really don’t know why we bothered that year.  We just punished ourselves, stupidly, to appease, to conform to expectations.

The same thing happened the year after and the year after that, too.  But we carried on, punishing ourselves and breaking our hearts in equal measure…all because the tradition on Christmas day is that you get ‘things’ and hoping that maybe, just maybe, one Christmas or birthday (if we kept on trying) Hannah might display a little bit of recognition or interest on the day of some of that ‘stuff’.

On the plus side nowadays and dependent on her mood, if a wrapped present isn’t secured with 3 miles worth of sellotape, she may consider taking a few seconds to independently try and open it – yay! She may even take an interest in something now! *does celebratory jig* But if it doesn’t open immediately, it’ll get cast aside.

So now, as Hannah’s older, we get asked “Is she getting excited for Christmas?”.  My standard response to this habitual question (after inwardly cringing, of course) being “Erm…well…not really” – as Christmas remains just another day for Hannah.  I ought to tell fibs and reply in an upbeat manner “Ooh, yes, absolutely!”.  It’d probably be easier all round and save the enquirer looking embarrassed or confused and me feeling like I have to explain for the fifty billionth time why Hannah probably isn’t looking forward to Christmas, why she hasn’t written to Santa, why she hasn’t asked or indicated what she wants…why…why…why.

Just.  Ruddy.  Why.  Indeed.

Arghh! *pokes own eye with finger*

Hannah has dolls, teddies and toys galore – regular toys and sensory toys.  She has books a’ plenty – and judging by the bite marks on most of them, they taste good too!  She has a wardrobe FULL of lovely things, that’ll last for ages.  She has a warm home, she has a very healthy balanced diet, she has clean bedding to sleep on and clothes to wear every day and she is loved.  Oh, SO loved.

Hannah doesn’t want for anything materialistic. She doesn’t (or can’t) ask for something…and she certainly doesn’t demand or expect anything either!

However, Hannah, as a result of her syndrome, needs SO much:

She needs help so that her walking doesn’t deteriorate any further.

Equally, she needs support and guidance to be able to speak or communicate effectively in order to express her needs and tell me where she’s hurting.

She needs that damned hospital appointment for her dental work to come quickly (Although I can’t begin to tell you just how much I’m dreading that!)

She needs autonomy – not to be reliant on an adult to meet all of her needs and keep her safe.

She needs assistance to be able to focus on task.

Oh, I could go on!

What she doesn’t need is more plastic stuff, more cardboard stuff.  More tat.  More stuff not to play with.  More inedible stuff to chew or swallow.

 

There’s clearly a disparity between those two words – want and need – but there are people out there who will never even make attempts to grasp that concept! *sighs*

 

So, I’ve made a decision.  This year, Hannah will get a few presents…but only a few.

But what do I buy her?

(That’s the quandary, btw – the ‘haven’t the foggiest’ bit – I only took about 1000+ words to ACTUALLY get to the point, didn’t it? Ah, well).

Like I say, she has stuff galore and I haven’t an inkling what to buy her.  I’ve racked my brain and can’t come up with a thing…except a foot spa.  Yes, I KNOW she’s 7 years old, but apparently this kid enjoys being pampered (a budding Lady Muck!) and very much enjoyed the experience of one recently, so she’s having one.  Plus, it may help relax her feet and legs.

…although I WILL, most definitely draw the line if she takes an interest in one of those fancy scavenger fish foot spas where your dead skin is nibbled away at.  Ew!.

Anyway, there’s no room at Broccoli HQ for an aquarium, so that’s the end of that.

 

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

I’m off to ponder a bit more.

Thanks, as always, for stopping by.

Until next time

Annie   xoxo

This post is dedicated to Santa’s Elves.  Those supernatural, industrious little guys, devoted to making their boss’s life that bit easier.

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5%

five-percent

I’m feeling a bit weird right now.

(At this disclosure, I can almost hear my friends laughing and saying “No news there, then!” – thanks guys…I KNOW that’s why you love me *blows kisses*)

So, I’ve ditched what I was writing, because I feel the need to get these feelings and thoughts out…

Please bear with me and fear not, I’m not planning to get all sombre on you.  I don’t host ‘pity parties’ at Broccoli HQ.  Parties, maybe.   But without the pity and with prosecco!

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

Anyway, Mr Postman delivered a letter to Broccoli HQ today.  With news of which I’ve been waiting for, for several years, in fact.

…it’s a REALLY good job I’m an incredibly patient person.

But when I opened it, I didn’t anticipate these feelings and thoughts I’m having come spilling out.

So, I’m sharing them with you.

You may’ve read about the day of Hannah’s diagnosis…when the room closed in on me and I felt that I’d never laugh again, never smile again and both Hannah’s life and mine – by this time SO inextricably linked – were literally over, with just these few words…

…Hannah has Cornelia de Lange syndrome.

If you’ve ever had a diagnosis or unwelcome news of any sort, you’ll probably be able to empathise.  You may even relive that cold, clammy, heart stopping moment when your world swiftly tilted and turned on its axis.

…and nothing was the same ever again.

And consequently, for me, the grieving and melancholy stuff kicked in for a while.  I needed to lick my wounds.  Soak all this stuff up.  I didn’t put a time scale on it…I just went with the flow.  And then I decided that I could either (a) wallow in self-pity or blame myself (even though none of this was my fault…or anyone’s) for the rest of my life, get everyone to perpetually feel sorry for me *cringe* or (b) just get on with life, try and enjoy it as best I could and make sure Hannah felt loved and accepted and had the best of life that I could give her.

I chose the latter!

Sure, I still have the odd weepy moment/day…no, I’m not depressed OR still grieving…it is what it is.  It’s called being human.

(For those of you who’re new here “Hello!” *waves enthusiastically* and who may’ve just had a diagnosis like Hannah’s, please, please, PLEASE hang on.  Read my other posts.  It’s undoubtedly a rollercoaster we’re on, but I do smile and laugh and enjoy most of my life.  Just like you can do too!)

Current research tells us that CdLS (Cornelia de Lange syndrome) can affect five genes (more may be found in the future, though) – the most common one usually being the one called NIPBL – which affects around 50% of people diagnosed.  It’s a complicated and pesky little bugger this syndrome, so looking for the one gene that’s gone a bit ‘Pete Tong’  is like looking for a needle in a haystack…literally!  I can’t even find my car keys in my handbag sometimes, so I’d make a pretty rubbish geneticist, that’s for sure!

Hannah was initially ‘diagnosed’ as having CdLS through her heart defect, cleft palate, skeletal abnormalities, gorgeousness (if I do say so myself!) but we needed to know the critter gene causing the problems and definitive confirmation that she did actually have CdLS and not something else.  So, Hannah’s blood was tested to see if her NIPBL gene had gone a bit haywire.

And guess what?

It wasn’t the NIPBL gene that’d caused her CdLS *sigh*

Great.  Just great.  Just our luck, eh?

Even though this syndrome is rare, we couldn’t just slot into the 50% category, could we?…we just had to be different.

So it was back to the drawing board and this genetics testing costs an absolute arm and a leg! Thank God we still have our NHS…for the time being, that is.

But (thankfully!) we were then invited to participate in the DDD project – Deciphering Developmental Disorders – a massive study of thousands of people who were undiagnosed.  So saliva and bloods (ours and Hannah’s) were sent off to a laboratory somewhere and we were advised to wait.  There were no guarantees of anything coming back.

We waited….and we waited…and waited a bit more…and forgot about it…then remembered…then waited some more…until today.

The letter arrived.

So, apparently, my kid does have CdLS.  And the gene called SMC1A is the cause of all her bother.  Like I mentioned before, CdLS is rare…well, through this letter, this kid just got even rarer, because the SMC1A gene affects only around 5% of individuals with CdLS.

So, how did I feel/am I feeling?

Excited at receiving the letter marked clinical genetics service.  News awaited, hopefully!

Tentative on opening said letter.

Melancholy on reading (yet again) Hannah’s name on the same page as ‘Cornelia de Lange syndrome’.

Relieved that the root cause has been identified.

Reassured (although I never blamed myself or anyone else) that this is probably just a gene change that happened in Hannah for the first time.  I didn’t give it to her.  I didn’t inadvertently hurt her.  I couldn’t have done anything different or better.

Hopeful that maybe, one day, perhaps not in my lifetime though, but hopefully in Hannah’s, a cure will be found to help her and other people like her.

Doubtful that a cure will be found as, given it’s so rare, there won’t be any funding to do the research.

Tearful – I have absolutely NO idea why.  So I’m blaming my hormones…again!

Determined – because now I can hone in on this specific gene when doing my research.  I can learn more.  I really need to know more.

Scared – Because CdLS IS scary at times.

…and just a tiny bit sad and rubbish and OK about this (as OK as I’ll ever be about CdLS) and maybe a little bit ‘meh’, all rolled into one.

I know, that makes no sense whatsoever, does it?

 

So, my girl is a ‘five percenter’.  A rarer than rare little one.

That letter is a bit of a game changer.

But what it doesn’t ever change is that she’s Hannah.  Not a diagnosis.  She’s a real, constantly scruffy little kid who helped change the way I saw the world…for the better.

23-8-16-x-2-2

And whilst I may feel a bit rubbish right now, I’ll get over it.  I won’t wallow or grieve or any of that other business, because I’m thankful I have my girl, I’ll continue to hold her hand along at least some of her journey….and she will SHINE.

So, I guess that’s all for now, my lovelies,

Thanks, as always, for stopping by

Until next time

Annie   xoxo

Now I’m no geneticist (you don’t say!), but I’ve done quite a lot of reading up since this syndrome came into our lives.  Nevertheless, I’ll spare you from any further waffle of mine and if you fancy having a read up on this gene stuff, here’s a link from the Centre for Genetics Education:

http://www.genetics.edu.au/Publications-and-Resources/Genetics-Fact-Sheets/FactSheetDNAGenesChromosomes

And here’s a link to the CdLS genetics info…

http://www.cdlsusa.org/research/genetic-information.htm

This post is dedicated to all the geneticists out there…I’m sure you find your car keys far quicker than I do…and to all the professionals dedicated to changing the lives of people affected by CdLS for the better.  Thanks SO much for taking an interest and doing what you do. ❤

 

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Dear Santa – Part 1

I wrote this two years ago, and it’s still one of my favourites. Santa, if you’re reading this, nothings changed ❤

my kid loves broccoli

Broccoli HQ

The United Kingdom

Europe

The World

The Universe

November 2014

Hannah's very first Christmas Hannah’s very first Christmas

Dear Santa

I hope you’re ok.

It’s been quite a while since I last wrote to you hasn’t it?

Sorry about that.  I’ve been a bit busy.

And I’m sorry I was REALLY cross at you for leaving me a Tiny Tears Doll when what I ACTUALLY asked for was a Cindy Doll.  You must have been a bit preoccupied that year.

I’ve forgiven you…although it took a while.

Well, it’s all ‘go’ around here…the stores are frantically packing their Christmas produce up to the rafters ready for the frenzy of shoppers.  The festive lights are getting switched on by Z list ‘celebs’ in towns near and far.  Everyone’s planning what useless (and cheapest) token present they’re going to buy Great Auntie Doris (“not MORE talcum powder, for heaven’s sake! – that’ll set her…

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Watch out, watch out, there’s a NIMBY about!

Or, otherwise entitled

I’m probably going to have another rant…sorry!

bricks-2

NIMBY:

Acronym for ‘not in my back yard’

“A person who objects to the siting of something perceived as unpleasant or hazardous in their own neighbourhood…”

Source:  Erm, can’t remember, but it’s somewhere on the internet (obviously!)

 

Blimey, this journey of ours is one humongous learning curve!

 

We all know that people ‘turn’ when things don’t go their way.  We’ve probably done it ourselves at some point too. However, I never anticipated discovering another darker, more disturbing side to people….and I want to share this with you, as it doesn’t get much press.

And that’s NIMBYISM.

But specifically the NIMBYISM that may affect Special Families, just like ours.

At one time, we assumed we had a relatively cordial relationship with all of our neighbours around Broccoli HQ.

Erm…seemingly, not so anymore!

Many of you’ll already know about our experiences, so you’ll know it was unpleasant then and, two years on, we continue to experience hostility and some behaviours which could very easily be deemed as domineering.

I’ll never forgive.  I’ll never forget.  But I categorically refuse to allow this to eat me up.

(n.b. All the rest of our neighbours have been absolutely amazing and incredibly supportive.  This ‘issue’ just relates to one household – but there’s usually always ‘one’, isn’t there?  *sighs*)

Anyway, our experience all started with a much needed ground floor bathroom for Hannah…

Broccoli HQ is a ‘compact’ (ok, small) residence and it just wasn’t fit to meet Hannah’s needs.  So, our local authority offered to help us out by building a ground floor extension.

…and what a relief that was.  I was suffering with chronic back and pelvic pain as a result of all the physical care I was providing and wasn’t sure how much longer I could go on.

Numerous professionals, including an occupational therapist and architect liaised closely to ensure the extension would be fit for purpose – both now and in the future – including where it would be sited on the ground floor.

But this room wasn’t going to be featured in some swanky magazine.  It wasn’t going to be a luxury Ayurvedic spa.  Oh, no siree! We weren’t having a fountain in the middle of the room spurting a constant supply of chilled champagne (sadly!).  There’d be no peacocks wearing golden necklaces leisurely strutting around the place, or lady attendants providing warm towels and spraying fancy fragrances as you entered.

Nope.  This room would house un-frilly, not particularly aesthetically pleasing, big stuff – like a changing table, shower chair, special potty chair and a toilet that would wash and dry the nether regions of a grown up girl who, maybe, wouldn’t be able to attend to her own personal hygiene needs in the future.

In addition, all health and safety aspects required consideration – which included escape routes/wheelchair access/fire protection.  The plans were drawn up, submitted for approval and dispersed throughout the neighbourhood. Everything was decided for us and was within the law.

But then…

There’s often a ‘but’ isn’t there?

The plans were opposed by one household.

Oh, they weren’t happy at all.  They had a right sulk. This new ‘thing’ simply wasn’t acceptable…and certainly not in their back yard!

Well, actually, it wasn’t IN their back yard.  But you get my drift, right?

This opposition was softened by stating that we could have the extension (gee, thanks, TOO kind!), but nowhere near them.

Erm, well, actually, there wasn’t another option, as this would’ve meant rebuilding the entire house!

Dur! *rolls eyes at the stupidity*

But after a stressful period of anticipation, the opposition was completely overruled and building commenced.

Phew!

But, let’s get some perspective here. In the grand scheme of things, this stuff REALLY shouldn’t matter, should it?  We’ve been through FAR worse than dealing with piffy little things/people like this.  Nevertheless, it hurt.  Actually, it hurt a lot.  I perceived this as blatant discrimination against my child…my vulnerable little girl who never asked for anything, but needed much.   Thankfully, she was (and is) blissfully unaware of all the toxicity and resentment oozing through our walls.

But what I want you, Dear Reader, to know is, that our case isn’t an isolated one.

I’ve learned that it’s happening all over the place.

We know this because our builder shared his experiences. He’s completed countless bathroom extensions for disabled children and adults and witnessed a plethora of discord and opposition…and just general nastiness.

We know this because others have shared their experiences or those of people they know.

We know this because professionals have informed us that people just don’t get ‘it’ and objections/conflict/even jealousy! ought to be anticipated.

And if it’s happening in our area, it must be happening in others.

Now isn’t that sad?

Whatever happened to compassion, to humility, to tolerance, to empathy?

So, that said, here’s my response to all the NIMBY’s out there:

Know this…

  • I don’t know of any Special Families who want to rile or upset their neighbours. Not one.  They actually have FAR more important things to be getting on with than having to deal with the likes of you.
  • I don’t know of any Special Families who really desire this kind of extension to their home…this is a necessity, not a frilly luxury. Its aim is to meet the most basic needs of people and their carers– to be as safe as possible in an environment (THEIR OWN HOME!) where one can bathe/be bathed, can brush their teeth, can wash their hair comfortably, can have their nappy or pads changed, can use the loo.

 

Now, NIMBY, answer me this: Doesn’t EVERYONE have that basic right? 

Well? ….WELL???????

 

  • Through your actions, do you take pride in knowing what you may have done to someone more vulnerable than you? Have you gloated?  If so, shame on you.  Really.  SHAME.  ON.  YOU!
  • I’ve always been comfortable with change. In life, change is inevitable. However, many people just don’t ‘do’ change.  Change is an unacceptable, alien concept.  Change is something to stridently oppose…just because.  And you’re probably one of those people.  But, by adding an extension to one’s home, we’re not encroaching on anyone’s land.  Sure, we may change someone’s view if our houses are squashed together, but we should never, EVER be made to feel like we have to explain or apologise for our children having the things they NEED.
  • Try carrying a child who throws herself backwards, with force, spontaneously, up and down the stairs, repeatedly, EVERY. SINGLE.  DAY.  Try not falling down the stairs whilst doing this.  Try, whilst on your hands and knees, changing their nappy on a hard bathroom floor for YEARS.  Try washing a resistant (and very strong!) child’s hair – the only way being by resting their head on the lip of the shower cubicle whilst ensuring they don’t wriggle too much and bang or cut their head.  Try lifting a dead weight in and out of a bath, twice daily.  Try this, just like I did for years and probably many, many other families just like ours do and will do.  Then come back to me and we’ll have a chat to see how you got on.
  • Special families have enough to cope with 24/7, 365. They really don’t need the aggro of sulky/abusive/rude/difficult neighbours.  They may actually find it quite unpalatable to hear your voice over the garden fence, bragging to your friends or family that you know of someone who “got one of these overturned” and you’ll be doing the same.  As far as I know, most Special Families just want to get on with their lives in peace and the very best way that they can.

Oh, and just to conclude dear NIMBY, I strongly suggest you don’t snigger at our plights too much – be aware that karma is an extremely powerful thing.  I sincerely hope that one day, you or your loved ones never have to have “one of these” built or require specialist equipment or adapted rooms due to an acquired disability, cancer, chronic ill health or old age.

…but you may do!

And, when that time comes, I really hope that YOUR neighbours have more compassion than you ever did.

Let’s see, eh?

Suck it up buttercup!!!!!!

So, that’s just about it, my lovelies.

Blimey, I got all serious again, didn’t I?  Oh, but writing this felt SO GOOD! 🙂

Thanks, as always, for stopping by.

 

“There’s a crack in everything, that’s how the light gets in”

Leonard Cohen

 

Until next time

Annie xoxo

This post is dedicated to all the professionals who supported us through this experience.  Thank you! 

 

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As long as…

So, let’s just recap to the bit where Hannah’s daddy said what he said.

(Just in case you’re new here “Hello!” *waves vigorously*, this ties in to my last post…so you might want to just pop back there and have a look at that)

Anyway, all the prospective daddies were having a good old time bonding and sharing their expectations of impending fatherhood, then, he (Hannah’s daddy) puts the mockers on it all in response to their collective “as long as the baby is healthy” comment and questioned what if the baby WASN’T healthy?…and would they love the baby any less?

Oh deary me!  It isn’t very British to speak your mind in such a forthright manner, really, is it?   He was subsequently ‘sent to Coventry’ after that.

Whoopsy!

But like I said in my last post, at some point, I probably said this too.  I can’t remember when and in what context, but it just seems to be the thing we’re expected to say and, after all, don’t most of us parents want the best for our children?  We don’t want our children to struggle or suffer, do we?

“As long as…”

We all say it at some point…

As long as the sun shines during my holiday/wedding day then I’ll be happy (but what if the sun doesn’t shine?)

As long as you don’t break it, you can borrow it (but what if they do break it?)

You can go out, as long as you come back on time (but what if they don’t come back on time?)

It’s often a conditional sentence, really.  And sometimes, we say it without even thinking.

But for me, in retrospect, I think it’d be a pretty smart move if we got rid of the “as long as the baby is healthy” statement, because it’s ambiguous and not that clear cut.  It’s almost habitual to say it too.  Even though inexplicit, it means all kinds of stuff.  Negative stuff.  And, for me, it completely invalidates the lives and glorious potential of babies, children, young people and adults with disabilities and health needs.

Without picking the comment completely to bits, does this (seemingly throw away) comment really mean…as long as the baby doesn’t have a medical condition and/or is not disabled?

Maybe.

Now isn’t that sad?  Because isn’t ALL life precious?

I hope I’m not coming across all preachy and judgemental about this (and putting the dampeners on your good mood!), however, aren’t we forgetting (or, naturally, don’t want to consider it – unless it happened to us, that is) that our healthy babies and children could acquire a disability or a life limiting illness later on in life?  In fact, it’s estimated that 1 in 400 of our healthy babies ‘in-utero’ may be diagnosed with cerebral palsy – some babies affected due to medical negligence during birth or even up to the age of around two.  (Source: cerebralpalsy.org.uk).  One child in every 500 in the UK will develop cancer before the age of 14 years (Source: childrenwithcancer.org.uk).  One in 3,500 boys will be diagnosed with Duchenne Muscular Dystrophy – a life limiting illness where the average life expectancy is mid 20’s (Duchenne.org.uk).  The Child Accident Prevention Trust (capt.org.uk) state that “accidents are a leading cause of death and serious injury for children and young people” – it is second only to cancer.

Whilst we can’t live day by day pondering on all this stuff and we’d all like to think “it’ll never happen to us or our children”…it may well do.  None of us are that special that we’re immune.  None of our children are exempt at any time from being unhealthy.  But let me ask you this….would our love for our children diminish if we knew they’d become ‘unhealthy’ or would we consider them any ‘less’ then?  I doubt it very, very much.  In fact, I’d go so far as to say that we’d never take a day, an hour, a millisecond with our children for granted from then on…when Mother Nature gives us a wakeup call – and really does make us realise just how precious life is.

We’ve recently celebrated our Paralympians’ achievements in Rio – through the parades in Manchester and London.   Many of those athletes weren’t born ‘healthy’…many of them also acquired their disabilities later on in life.

And just off the top of my head I can think of some people whom most of us are aware of who were born with, were suspected of having or who acquired additional needs in childhood or adulthood:

Professor Steven Hawking (ALS),

Dudley Moore (Club foot),

Stevie Wonder (sight impairment),

Hellen Keller (deafblind),

Beethoven (hearing impairment),

Ian Dury and Frida Kahlo (polio)…in fact, it was also suspected that Ms Kahlo had spina bifida too.

Albert Einstein, Franz Kafka & Carl Jung (suspected Autism or Aspergers syndrome) – all hailed as geniuses in their fields.

John Mellencamp (Spina Bifida)

…and all these people were someone’s baby at some point.

In fact, the world has seen musicians, professors, artists, authors, politicians and political activists, academics and all manner of amazing people with additional needs – famous or not –  doing their stuff incredibly successfully (FAR more successfully than probably you or I will ever do) and many of them not born “healthy”.

But for me, you don’t have to be ‘successful’ in anything at all to be worthy of being a global citizen.  We all share something in common, something incredibly significant:  we’re all born in a day and we all die in a day.  Apologies for pointing this out…I usually endeavour to be jolly and reasonably positive in my posts, but really, it’s a fact, ain’t it?  I suppose the timescales and what we do in-between the born bit and the dying bit differs for us all.

I bet too we all know of at least one person with a ‘hidden disability’ – whether acquired or congenital, diagnosed or undiagnosed – anxiety, PTSD, epilepsy, hearing loss, diabetes, chronic pain, depression…

Are all these people any ‘less’ than a non-disabled person? Nope.  Absolutely NOT!

My baby (Hannah) wasn’t born ‘healthy’, but was I delighted that she came into my life?  Definitely, yes!

Is my life more enriched, more meaningful, far more colourful for her being around? Without a doubt!

Do I love her any less for having significant disabilities?  NO! I couldn’t love her more. 

Am I blessed to have her in my life?  Oh, absolutely!

Is she the greatest teacher I’ll ever have? Yep!

My girl is my hero.  She’s perfect.  She’s unique.  She drives me completely potty and scares me stiff and is the scruffiest kid I know *sigh*.  I never, EVER take a day with her for granted and maybe, just maybe, I WOULD have done if she didn’t have her syndrome and all its associated issues.  She has more zest for life than most adults I’ve ever come across.  She may have significant additional needs, however, she’s no ‘less’ worthy of being on this planet than you reading this, or anyone else for that matter.  Make no mistake about that!

Despite all the trauma and adversity Hannah’s already faced in her seven years on this planet, if she could speak or communicate effectively, I KNOW she’d tell me she was happy to be alive.

…and she’s precious.  SO overwhelmingly precious.

IMAG0679.jpg

So, I guess that’s all for now, my lovelies.

But let me leave you with this before I go….one of my favourite quotes…

“The gentle spring rain permeates the soil of my soul. A seed that has lain deeply in the earth for many years just smiles”

Thich Nhat Hanh

(Blimey, I got all serious in this post, didn’t I?  Sorry.  I’ll try and lighten up a little next time)

Thanks for stopping by.

Until next time

Annie xoxo

This post is dedicated to my very own Gentle Spring Rain – Hannah…and all of our unhealthy babies ❤  

 

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Giving birth in the broom cupboard

Hi!

I guess if you’ve read my posts before (thank you fabulous people!) you’ll know quite a bit about Hannah and our life by now….but I’ve hardly mentioned what happened before she came along, have I?

Well, aside from the birds and bee’s thing happening – I’ll spare you that, you’re welcome! – Hannah’s daddy and I happily skipped off (actually, I waddled) to a series of parent-craft classes; in which we were to learn everything there was to know about babies and childbirth and whatnot.

We didn’t learn everything, that’s for sure!  But, nevertheless, it was interesting.

In one of the sessions, prospective new mums and dads were split into respective gender groups and invited to scribble down on a flipchart their ‘expectations’ of impending parenthood.  Hannah’s daddy returned from his session pretty rattled and on the drive back home, he told me why.  It seemed the consensus of his group was that ‘as long as the baby was healthy’ then the dads weren’t really that bothered about anything else….other than ensuring their kid supported the same football team!

“But what if the baby isn’t healthy?” Hannah’s daddy asked…whilst, undoubtedly looking grumpy (he’s good at that!).  “Would you love it any less?”.  Apparently no-one answered and I bet a pin could probably be heard dropping somewhere.  He’d put a ‘bit of a downer’ on the groups conviviality (he’s got the knack of doing that too!).   So, needless to say, he became a bit of an outcast after that.

Whoopsy!

(Btw, just giving you a heads up, I’ll be exploring this comment in my next post)

I too have heard many people making that comment and, at some point, I probably did too. Like the rest of the group, we thought we had nothing to worry about.  Little did we know what was ahead for our miracle baby!  My pregnancy was pretty great, aside from a few niggles here and there, albeit with raging anaemia later. All the scans (I had a few extra…being a ‘geriatric mother’ – thanks for the label NHS! *shakes fist*) were allegedly absolutely fine.  How they could’ve missed what they did baffles me…but that’s another story.  All I’ll say on the matter now is ‘should’ve gone to specsavers!’.

Anyway, life was looking pretty rosy for us…or so we thought.

We watched (wide eyed) the demonstration of the toy baby being stuffed through the plastic pelvis and then the obligatory DVD of a woman giving birth…where many of the prospective mothers turn 50 shades of green (not grey!) and Dads giggle a bit and mutter witticisms.

…and then we all had juice and biscuits.  How very British!

At a later session, you find us all gathered at the hospital, awaiting “The Tour” and we’re all a bit giddy by this point.  Reality is setting in.  Gulp!

I suspect the midwife would’ve made a rather excellent Estate Agent (Realtor – for my lovely chums across the pond “Hello!” *waves vigorously*) as the first stop was the brand spanking new, multi million pound birthing ‘suite’.  Oh, it was all very posh and lovely (and clean!)…and BIG…and sparkly…and it was clear that, from what the midwife was saying, this would be THE place to have your baby…if you were lucky.

There was even access to a (free!) TV so that dads could watch the football.  How thoughtful.

I suspect we all assumed we’d be in there, when the time came.

We then huddled around some scratched, insipid looking swing doors.  “So, mums and dads, here’s the central delivery suite” she bellowed jovially, perhaps attempting to distract us from hearing the screams of agony (or “GIVE ME ALL THE DRUGS YOU’VE GOT” or ”DON’T EVER COME NEAR ME AGAIN!!”) threatening to resonate through the other side of the doors.

“Knowing my luck, I’ll end up in there” I said to Hannah’s daddy, gesturing backwards towards a tired looking cupboard door.

Oh how we laughed.  Then!

 

broom .jpg

Here’s my interpretation of the broom cupboard! 

 

We were then guided down the corridor to the final stop – SCBU (The Special Care Baby Unit).

“…and that’s where some babies have to go if they’re poorly”.  Silence ensued.  If this’d been a Western, you’d have seen tumbleweed rolling down the corridor.

And that was that.  Nothing else was said on the matter.  So we all got into our cars and drove home.

Fast forward several weeks later and I’m in hospital, cranking my TENS machine up to the max.  I’d been ‘checked out’ the previous day after bleeding, but discharged a couple of hours later and advised (firmly) that baby was definitely not coming any time soon and to return if the bleeding got worse.

Obviously, it got worse immediately on returning home! *sigh*

The car engine hadn’t even had time to cool down before we did an ‘about turn’.  Several hours later, my waters had broken (whilst watching Big Brother Live – I was bored, everyone was sleeping!) and Hannah had done a bit of a dirty protest in-utero, so I was stuffed in a wheelchair and whisked away.  “Oooh!  Are we off to the birthing suite?” I asked the nursing auxillary in the lift (elevator).  “Oh no” she said apathetically.  “Delivery”.  Great.  Typical.  Just my sodding luck, as always!  No sparkly ‘flagship’ birthing suite for me, then.

And whilst the room wasn’t exactly the broom cupboard, it really wasn’t far off resembling one!

This place could never be mistaken for The Portland Hospital and I certainly wouldn’t be offered canapes and champagne post childbirth!  Still, it was free.  So perhaps I ought not to complain.

However, the bars on the tired looking window (I kid you not!) didn’t particularly help set the ambience and, at one point, there were six of us in that room and despite me having ‘centre stage’ (so to speak) it was a bit of a tight squeeze.

So after a relatively easy birth – I’ll spare you that too, you’re welcome  – the fancy lavender room spray Hannah’s daddy squirted in my face (he didn’t read the label, he thought it’d relax me! *rolls eyes*) helped take my mind off what was going on for a while, lots of gas and air (love, love, LOVE that stuff!) and Hannah’s daddy moaning about his back hurting whilst holding my leg up in the air (Oh, we had words!!!) our tiny, vulnerable, bundle of scrumptiousness quietly arrived…and was subsequently whisked off to an incubator in SCBU….which was a bit of a shocker (total understatement!).

…and then, well, you probably know quite a bit about the rest already.

…erm…aside from the bit about me thinking Hannah was dead.  Not nice.

…oh, and the maternity unit fire alarms going off most of the night – I discharged myself the following morning!

…and holding onto Hannahs daddy whilst taking a first post childbirth wee because I feared all of my internal organs would fall down the loo.  Probably TMI there, huh? Apologies.

…and startling the lady at the checkout in M&S food hall the following day as I waddled forth to pay, tentatively (with stitches), looking like a zombie with pasty face and bloodshot eyes.

I couldn’t make this stuff up if I tried!

 

 

So, I guess that’s all for now, my lovelies.

Ah, well, not quite.  You see there’s this very special awards thingy that I’d really appreciate nominations for.  Here’s the link:

http://www.myfamilyourneeds.co.uk/baps/enter-round-1/

If you’d like to vote for My Kid Loves Broccoli, just pick whichever category you feel is apt for the blog….we probably fit ‘The truth about SEND” and maybe, if you’ve found my posts funny “SEND with a side dish of humour”.  You can even vote in several categories if you want…and then it takes a couple of clicks and Bobs your Uncle! 🙂

Thanks (as always) for stopping by.

Until next time

Annie xoxo

This post is dedicated to Leila, the student midwife who delivered Hannah ❤ and to the lady in M&S!

p.s. Expectant mummies (and daddies)…if you’re reading this, PLEASE don’t get all paranoid about your baby and start googling stuff – you’ll scare yourself silly.  Enjoy your pregnancy.  Whilst we didn’t know what was to come, our case is rare.  Very rare.  xx

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