Haven’t the foggiest!

foggiest

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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Spinning plates

Him:  (Says cheerily) “Hello.  What can I do for you?”

Me:  “Hi.  Well, I’ve got this lump that I’d like you to take a look at” (show’s him the lump)

Him:  (Looks at lump.  Frowns.  Gives it a bit of a prod and a squeeze) “Hmmm….I’m not sure what it is”

Me: “Oh” (slumps in chair and looks a bit disgruntled at the ‘not sure’ remark)

Him:  “How long have you had it?”

Me: (looks a tad sheepish) “Well, I’ve had it for quite a while and just ignored it, hoping it’d go away…but it’s got bigger and more painful recently”

Him:  (undoubtedly mentally rolling his eyes in his head at the ignoring lumps comment and thinking ‘idiot’) “Well, erm…it’s probably a cyst or maybe a ganglion”

Me: “Probably or definitely?” (Raises right eyebrow and gives him one of ‘those looks’ that says “I’m not leaving here with a ‘probably’, Mister!”)

Him: (taps on keyboard, scratches head, then has a Eureka moment) “Yes, see, it’s a ganglion (prints off a medical sheet and hands it to me)  “I’ll make a referral to have it surgically removed, if you like?”.

Me: (flinches at the word ‘surgically’) “Erm”

So then he talks to me about options and risks and whatnot and I politely decline any invasive medical intervention for now – thoughts flash through my mind about how I’d look after Hannah or, worse case scenario, who else would/could if I was out of action for any length of time.   We then discuss the alternative ‘traditional cure’ of hitting it hard with the family Bible…but then both agreed that wouldn’t be prudent…for my lump…or our Bible!

So I said my adieus, clutching my sheet of ganglion paper, promising weakly to come back if there were any changes, oozing or bleeding (great!) and then my lump and I skipped out of the door of the trainee GP’s room.  I’ll tell you what, that young man was FAR too good looking to be a doctor…and, consequently, I won’t be discussing MY peri-menopause with HIM any time soon, that’s for sure!

A couple of days later you find me in bed, looking ‘pale and uninteresting’ (an old term of endearment my mums GP friend often used to describe my pallor), intermittently sweating like a pig (do pigs really sweat that much?) and shivering and feeling very, very sorry for myself.

“I knew I shouldn’t have gone to the doctors.  I’ve picked this up sat in that waiting room” I feebly barked at Hannah’s daddy as he plonked a cup of tea on my bedside table.  Which telepathically REALLY meant was “I blame YOU for this.  If you hadn’t pestered me to get that lump checked out, I wouldn’t have been crammed into that sitting area, inhaling other people’s germs…IT’S.  ALL.  YOUR.  FAULT.  Thanks a bunch!”

But I didn’t say that.

Obviously.

Because, clearly, it wasn’t his fault at all.  He was entirely right to pester me.  I am a fool.  I am a self-confessed (former, now) lump ignorer *flails self for being a complete idiot*.

So, for 3 days, I was a useless, limp lump of viral infection….with an extra lump.  In fact, I’m still simmering with bugs *sigh* My immune system had had enough of me running around spinning plates, thinking I was Superwoman and decided to stop me in my tracks.  Which it did, rather successfully.  Banished to my bed for fear of contaminating the whole of Broccoli HQ…but most importantly, for fear of giving Hannah ‘the lurgy’, Hannah’s daddy held the fort as best he could.   And whilst Hannah enjoyed the attention of someone else, I huddled under the duvet in my fevered state, ‘paracetamol-led’ up to the eyeballs, intermittently and with disinterest flicking through the TV channels and the web.

I was bored out of my skull and feeling impatient; I had things to do and a child to look after, I couldn’t be wasting time, festering in bed!  This was rubbish.

Oh, hang on, a re-run of The Real Housewives is on.  I’ll have a look at that.  Several minutes later I was tempted (if I’d had the energy!) to forcefully chuck my hot water bottle, jar of vicks vaporub and half a bottle of Lucozade at the screen.

“I do everything for everyone else.  It’s time I did something for myself” she said, following the offer of a trip to Vegas with her friends.  This is after watching her playing tennis (almost semi–naked *tuts*), going out with friends, lunching, shopping (for fun, FUN!!!…not for toilet paper or washing up liquid!), seemingly just schlepping around without a care in the world.  This woman’s’ done more for ‘herself’ in one episode than I’ve done for ‘myself’ since Hannah was born. Grrr!.

Oh and THEN she’s in Hawaii.  Just for a little break…BREAK!!!…because she ‘needs it’…Awh, bless.  “It’s SO hard” she says, whilst cavorting in the sea in her teensy bikini.  “I have so many responsibilities” she says – as if it’s all just so torturous.  This is after the camera has panned to her two nannies.  TWO!  And her house manager.  A MANAGER TO MANAGE HER HOUSES.  HOUSES!  PLURAL!

And then we see one of the other mommies, buying thousands of dollars’ worth of jewellery for her daughter’s birthday present.  Lovely!…except the child is four years old.  FOUR!  Now, if I’d have bought Hannah any jewellery (even plastic stuff) at that age (or her current age), it’d have been snapped immediately and then swallowed.  FACT!

Dear God above.  I know a few people who’d kill for this kind of lifestyle, but I truly am SO thankful that I don’t live that kind of life (see footnote)…or have those attitudes*shudders* – although, probably like most Special Parents, I wouldn’t turn my nose up at a cleaner, an occasional baby sitter/some respite or having the opportunity of flying a physician in on a personal jet…rather than sitting in a grotty waiting room…OR having to change my child’s nappy on the floor of a fetid public toilet.

What another world we live in, eh?

If you’re new to us “Hello!” *waves enthusiastically*.  The star of this blog is Hannah, my daughter, who has a rare genetic syndrome which pretty much affects most aspects of her life.  We don’t have ‘help’ or, let’s be honest here, any substantial support system outside of the support we pay for.   So, basically, Hannah’s reliant on me and/or her daddy for everything.  Which is a little bit (OK, a LOT) scary sometimes.

I won’t harp on about statistics, however, even though I write some pretty daft posts, I like to throw some serious stuff in, now and again, you know, just to help get the message across that our life IS actually pretty tough sometimes.   There’s lots of findings out there that suggest caring for a disabled child, young person or adult can have a significant impact on carers’ emotional and physical wellbeing.  In 2012, 8 National charities surveyed nearly 3,400 carers.  The findings were staggering.  83% of carers said caring had a negative effect on their physical health and 87% on their emotional health.  39% put off medical treatment because of their caring responsibilities.  (Internet Source:  In sickness and in health, Carers UK)  I can pretty much relate as, I suspect, can many other Special Parents.

So, what happens if/when parent carers become unwell – either physically or emotionally?  Well, it’s probably up to the other parent carer to pick up the pieces – like Hannah’s daddy did.  Or, perhaps, other family members – like grandparents.  Employment may be affected…ergo, loss of earnings or, if long term, possible loss of jobs and then subsequently a very limited income and the spiral into debt…and it’s a well-known fact that it’s FAR more expensive to care for a disabled child.  There’s no emergency number or appropriate service that’ll provide the support Special Families really require in an emergency.  Sure, some Local Authorities or charities may be able to provide a little bit of help, but, clearly, it’s not enough.  Not by any means.  The proof is undoubtedly in the statistics!

 

juggling

This is me

 

Our life, like many others, is a great big spinning plates affair (see picture) – far more so than an average parent…and it’s challenging sometimes too. Occasionally, people will (very kindly) point out to me that I ‘must look after myself’.  Which I try to do.  However, my rapid riposte (albeit tongue in cheek) at the suggestion of them having Hannah for a couple of weeks whilst I have a rest, has them recoil like a freshly salted slug.

The support just isn’t there.  Anywhere.  *gets violins out*

So what’s the point of this post (i.e. my ramblings)? Erm…let me think…

Well, aside from having a grump in my (still) mildly infected state, I suppose it’s a message for my lovely Special parents NOT to ignore lumps or any other illness.  Our kids need us.  We need to get checked out every now and again.  Look after ourselves *groans* – yeah, I know.  If you’re lucky enough to have a support system, occasional duvet days are OK…and sometimes rather necessary.  We need to recharge.  Constantly spinning those numerous plates is tricky and sometimes, just sometimes, WE need to come first; to pace ourselves (maybe a little better than I’ve done recently)

…and maybe give a big thumbs up to Hannah’s daddy for looking after Hannah…even though he did put her knickers on a bit ‘skew-whiff’ (bless).  Oh, and I don’t recommend throwing a hot water bottle at the TV.  Water and electrics don’t mix!  Just sayin’.

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

Apologies for the ramblings.  I blame my virus!

Thanks for stopping by.

Until next time

Annie xoxo

 

Footnote thing:  No, if I had that wealth, you’d find me in a field, in Cornwall (Derek, DEREK, she’s going to go on about Cornwall again….get the sherry out of the top cupboard – it’s going to be another long one!), in my flip flops, running around after my alpacas or tending to my organic garden or ensuring my Special families were enjoying their holiday of a lifetime with me.  Now THAT, for me, would be a perfect, perfect life.

(Btw, Derek, no need to get the sherry out…I won’t go on about Cornwall…for now *wink*)

This post is dedicated to all the slugs I salted (in the past).  Really, really, sorry guys.  Really!

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Grandparents

I have such fond memories of my grandparents:

Grandma, always smiling, with her perfect bouffant, ever changing in all manner of muted candy floss colours and always referring to me as “chucky egg”.

Summer holidays at their seaside homes, mooching around in rock pools and returning with all kinds of obscure ‘gifts’ just for them.  The once cherished plaque glinting in the sunroom, now lost – a commemoration of her Irish father’s tragic demise during her early childhood in WW1.  Poring through photographs of treasured trips to their beloved Switzerland.  Izal toilet paper – the distinct medicinal smell, the scratchiness!  *winces*

The quintessentially English breakfast table; toast slathered with honey, lace tablecloth, bone china tea pot, matching cups and saucers.  The tea time burgers in gravy, congealing for hours in the ovens warming tray.  Intended as a treat but consumed reluctantly and solely out of politeness.  Oh, those burgers!  *shudders*

Gentle grandpa always humming a nameless tune.   The packet of Fishermen’s friends. Daily walks on the seafront, no matter what the weather, little hand safe in big hand.   Confident, astute grandpa, dapper in suit and trilby. The grandpa who said “blood and stomach pills” in preference to cursing.

Fishing in the lake at the back of grandpa’s house.  Bowling greens.  Huge bouquets of knitbone (comfrey), dried and applied as a herbal remedy.

Oh, writing this brings such nostalgia…and melancholy.  Smells, feelings, memories, regrets of never being old enough or wise enough to express how much I appreciated them.  Sadness of not having the opportunity to know them in my adulthood.

I wished I could go back in time and soak it all up again.  Soak the essence of them up again.  I was so blessed to be so loved.

And now there’s the memories of Hannah’s grandparents:

Tiny baby Hannah, gently cradled on her grandpa’s lap, whilst he softly regaled tales of his youth….and those funny, funny made up stories.

Thursday afternoons after lunch made by mum, lay snoozing on the sofa with my baby at my old family home.  Warm.

Watching Hannah’s grandma take such pleasure bathing, feeding and playing with her….and seeing that glint in Hannah’s eyes – an awareness there of her being so precious that she could probably get away with anything if she wanted to.

Grandpa, spending hours in his garage, tinkering, fixing things, making stuff for her.  An occasional tear, surreptitiously swept away.

grandma 1.docx.jpg

Hannah was, and is, blessed too.  For all four of them, no-one in the family ever did, or ever will, come close to the adoration they had/have for this little girl, their only granddaughter.

I know that I’ve been incredibly lucky that all of these people have been in my life, our life.  Sadly, others aren’t so fortunate, because not everyone who has a child with additional needs has parents who can accept that their grandchild is extra special.  How sad.  How heartbreakingly sad.

Rifts can ensue.  Relationships may break down.  Those memories that could’ve been created are never, ever made.  For me, out of any family member, no-one, but no-one, could come even close to the relationship a grandchild can potentially have with their grandparents.  It’s special.  Unique.

Equally though, in some instances, grandparents take over the primary role or provide the vast majority of care for their grandchildren…and that can come with a number of challenges.

Naturally, most people want the best for their children and grandchildren.  When they see them hurting, they hurt too.  They instinctively want to fix it.  But sometimes, sadly, that hurt can never be fixed, just alleviated a little.

There are undoubtedly many benefits of being a grandparent; having the time to spend with the grandchildren that maybe you didn’t have with your own kids and after enjoying carefree times of trips to the playground, walks and sticky cuddles, you can hand them back at the end of the day and go put your feet up in your own, clean, clutter free, quiet home.  Bliss!

But it’s perhaps much less easy for grandparents of children with additional needs.  Those anticipated days and trips and sleepovers don’t always come to fruition.  There may be feelings of helplessness and despair and grief for the loss of a life and relationship once excitedly anticipated.  The worry may be constant.  The desire to help out as much as possible probably never fades.

So, if you’re a grandparent of a child with additional needs, know this:

You’re probably valued.  Really valued.  Even if we’re so wrapped up in our own little worlds that we don’t always express it.

Thank you for going the extra mile.  For trying to empathise, for trying to understand.  For your research.  For your non-judgemental approach.  For your quiet support without any agenda.  For that unconditional positive regard.  For hiding your own hurt.  For all those caring deeds, like washing the dishes or hanging the laundry out or doing the ironing.  For your prayers.  For sometimes taking the pressure off just that little bit.  For being there in good times and the not so good.  For the phone calls and texts.  For your genuine unwavering concern.  For making that four hour round trip bus ride just to be near your grandchild in the ICU.  For the things you spotted in the shop that may come in handy one day…for all the thoughtfulness.   For celebrating achievements.  For sprinkling a little stardust.  For the fun and overwhelming adoration and love.  For everything.  I know it’s probably not easy for you too.  And whilst those memories you may’ve initially anticipated making may never come to fruition, know that the memories you are making mean everything and more.

So, whilst we may not always say it or show it, thank you!

You are loved ❤

grandma-2

“A grandmas name is little less in love than is the doting title of a mother”

(William Shakespeare)

 

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

Many thanks, as always, for stopping by and reading my ramblings.

Until next time…

Annie   xoxo

This post is dedicated to Hannah’s five grandparents – yes, five, not a typo.  Three gone, but never forgotten.  I hope, that wherever they are, they’re watching over their granddaughter and keeping her in their prayers❤

p.s. Here’s a link to a resource from Contact a Family.  I found it useful when Hannah was born.  I’m sharing in the hope it’s of some use to someone else. xx

http://www.cafamily.org.uk/media/445582/grandparents_may_2012_final_low_res_for_web.pdf

 

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Goodnight Sweetheart

Or, otherwise entitled…

A momentous occasion is upon us!

Or

Patience is a virtue

Or

Life doesn’t always go to plan

Or

I obviously couldn’t make my mind up what to call this post, could I?

Or

I was thinking of just telling you this as a Facebook post, however, given it’s such a momentous occasion, I think it really deserves a post on the blog instead.

(but that would’ve been a long title!)

goodnight-sweetheart

Ooh, I’ve waited for this for soooooooooo long!

But tonight, will probably feel very strange.

Very strange indeed.

…and I’ve got the collywobbles.

Because tonight……………..wait for it……………………………….don’t worry, it’s not, “Tonight Matthew, I’m going to be Lady Ga Ga  (like that programme, Stars in their eyes* )…………………………..Oh no! Even better than that!………………………Because, tonight, Hannah will be sleeping in her very own, rather lovely bedroom in her very own big girls bed.

HIP, HIP (TRIPLE HIP WITH SOMERSAULTS) HOORAH!

Ok, so, if you’ve not been following us for a while, you may be wondering why a seven year old child hasn’t been sleeping in her own bedroom, in her own grown up bed, for some time already.

So, make yourself a cup of tea [prosecco], get comfy and I’ll waffle on for a bit (you know, like I do).  Verbose is, after all, my middle name *wink*

 

Here’s where it all began…

All excited at the impending birth of our surprise baby, Hannah’s daddy and I prepared the ‘nursery’ ready for our new arrival.  It was all very exciting, I must say.  The plan was that she’d sleep in her Moses basket for a while in our room and then move into her own bedroom.

Erm, well, that was the plan, anyway.

But sadly, plans don’t always come to fruition, do they?

Then, one morning, seven years ago, the proverbial S.H. One. T hit the metaphorical fan.  Apologies for the ‘alludeness to crudeness’ (I just made that up), however, I’m not going to wrap this up and make it pretty.  Because it wasn’t.

Hannah came into our lives (thankfully!) but a Tsunami followed behind – a great big, massive wave, which washed all our plans and dreams away.

There was no plan B.  We weren’t prepared for any of this.  We just had to wing it and hope for the best.

So then, when we eventually got her home to Broccoli HQ, came around-the-clock naso-gastric feeds, scary nights lying awake listening to Hannah’s breathing pattern (and lots of desperate prayers that she’d keep doing it!), SATS monitors (to check enough oxygen was circulating), congestion, vomiting, reflux.  Nights and nights of reflux.  Damn, I HATE reflux!

Separate bedrooms clearly weren’t an option at this juncture.

Then came the desperate need for a specially adapted ground floor bathroom – annexed to a bedroom.  Our existing bathroom just wasn’t going to ‘cut the mustard’ long term.

So consultations with professionals ensued.  They knew the requirements FAR better than us – like how big it needed to be, where it needed to be, what needed to be in it etc).  Plans were drawn up.  Neighbours protested (well, only 1 lot, the rest were incredibly supportive and understanding) They tried anyway…and failed, miserably! (the NIMBY’s don’t talk to us now) *fist pump*.  Apparently, the local paper took it upon themselves to publish a little article on neighbours disputing plans for a disabled child’s bathroom – which was nice of them.  Then council planners discussed it, boxes were ticked, people in suits and frocks approved it, builders were sourced.  And then we waited.  And waited.  And waited.

It was a lengthy process.  But despite the wait, we were (and are) extremely grateful.

So, naturally, yet again, there wasn’t any point settling Hannah in her own bedroom, when it was going to have a great big hole ripped out of it and lots of men traipsing through it.

So she stayed with us.

Then, the builders and electricians and tilers and plumbers and men in suits to check the builders and electricians and plumbers all came.

And after gallons of cups of tea were drunk (each cup containing about 400 spoonful’s of sugar!) and biscuits eaten, the purpose built (and desperately needed by this time) bathroom was ready – with remote controlled ‘disco lights’, courtesy of Hannah’s daddy, because he thought Hannah would like it….bless! (She does, btw)

The disco bathroom was born.  Yay!

But naturally, Hannah’s bedroom now required decorating and re-jigging to make it ‘Hannah friendly’…which all took time, thought, money and consultation.

And then it was ready, phew! and accommodating a brand new toddler bed, chandelier (ooh!) and sparkles on the ceiling.   We were really looking forward to this transition.  A few individuals then took it upon themselves to bring to my attention with a ‘hohoho’ that this’d all be strange, or scary or whatever.  Like I hadn’t considered that already.  Duh!

OF COURSE IT’S GOING TO FEEL STRANGE.  OF COURSE IT’S GOING TO BE A LITTLE SCARY.

OF

COURSE

IT

IS

I DON’T.  NEED.  YOU *points finger in a pointy manner*.  TO.  POINT.  THAT.  OUT….ARGHHHHHHHH!!!!

(That was me shouting, btw.  Sorry about that.  I’ve composed myself now)

But, I’m pretty sure we’ve tackled situations significantly scarier and far stranger than this.  So I suspect we’ll cope.

But, again, plans went awry.  BIG time, this time….

The new plan was, that several weeks prior to the school summer holidays, we’d gradually – through weekend afternoon snoozes – get Hannah used to being in a different room, in a bed, without cot sides *gulp!*

But then, well, if you’ve followed us for a while, you’ll know why.  I won’t go on about it.   Life was put on hold for a long, long time.

So, subsequently, childhoods and love and memories and two whole lives were packed into boxes and Hannah’s bedroom – the only room with any space at Broccoli HQ – accommodated some of it.

And then, to top it all off, we deemed the toddler bed too small for our little poppet, who appeared to have had a bit of a growth spurt when we weren’t looking.

So a new, grown up, big girls’ bed needed to be sourced.

Special beds for kids with disabilities were considered.  However, (a) they looked like/were like cages and (b) on establishing a small family car was comparable on price (I kid you not!), we looked elsewhere.

I trawled the internet for the right one and, surprisingly, John Lewis came up trumps, albeit after several weeks wait as the bed was out of stock.  Just our luck, eh?  *Tuts and rolls eyes*

And now Hannah’s ready.  She’s fed up of her cot, she’s fed up of looking at me first thing in a morning across the bedroom with my bed head and, despite being non-verbal, is able to make her feelings known on this one.  She wants out.  We’re ready too – I want my bedroom back, it’s in dire need of a makeover and, actually, one weekend evening, I’d like to get my jammies on, watch telly and eat crisps and, maybe, drink wine in bed – how utterly ostentatious!  We’re not waiting any longer.  We’re not making any more plans, because plans are just rubbish.  We’re commencing ‘Operation Big Girls Bedroom’ FROM TONIGHT!

Oh my days!

…and, after a night of impending reflux or a tummy bug, it will come to pass that Hannah’s daddy will finally realise that the weeks wages he paid for the beautiful White Company bedding, was, perhaps, not such a good idea, after all! (he meant well though)

So, let’s wrap this up, shall we?  But before I go, I’ll leave you with a quote from Homer, The Oddysey:

“There is a time for many words and there is also a time for sleep”

I’ve done the many words bit (see above)….so it’s PJ’s on and then off to bed we go…let’s hope we do all get some sleep!

Goodnight my darlings.

Wish us luck.  Keep your fingers and toes crossed for many restful slumbers, please.  I’ll keep you posted via facebook, but if my posts look anything like “lkjhbdijn dhj& o—?lkjhnba”, you’ll probably be correct in thinking that I have a little bit of sleep deprivation!

Until next time.

Annie   xoxo

 

This post is dedicated to all the night owls.  No offence guys, but hopefully we won’t be joining you!

p.s. THANK YOU, THANK YOU, THANK YOU, for the AMAZING response to our last post “Did I just hear that?”.  I’m totally overwhelmed❤

 

*Hello, lovely friends across the globe!  ‘Stars in their eyes’ was a British TV talent programme, where members of the general public dressed up and impersonated showbiz stars – like Elvis or Madonna or Liberace et al.  Apparently it was incredibly popular.  I wasn’t too keen, tbh!

Posted in Parenting, Silly stuff, Syndromes/Special Needs | Tagged , , , , , , , | 2 Comments

Did I just hear that?

Or, otherwise entitled…

Oh M G!…

Or

I’ve been itching to tell you…

Or

It’s time to partaay!

 

 

Hello my lovelies.

Quick post…

I have news.  Exciting news.  Rather MAHOOSIVE news, actually….

So, if you follow us on Facebook, you’ll know we’ve just arrived home from a (much needed) break away.

It was, as always, blissful.

Fear not, I’m not going to go on about Cornwall…although I will do…if you want me to! *wink*

IMAG0707.jpg

My Kid Loves Broccoli…and Cornwall❤

 

But, whilst there, we had to go and see a man about a dog.  Well, actually, we had to go and see a very nice man, a two and a bit hour drive away in a beautiful, but rather remote, part of Devon, for Hannah to have a review of her Snowdrop programme.

To spare you from me rattling on too much about the programme, here’s the link just in case you’re interested in reading more.  http://www.snowdrop.cc/

Basically, Snowdrop provides neurodevelopment stimulation programmes for children with a wide variety of diagnoses.  It’s not something you can get on the NHS – as far as I’m aware.  We’ve listened to and nodded politely at the odd critic here and there, who’ve voiced their scepticism about Snowdrop.  But, you know what?  I know, hands down, that this is working for Hannah, so, as long as we can continue to afford it, we’ll continue to participate.

Anyway, I’m not going to have a grump about sceptics in this post.  Like I mentioned, I have news to share with you.

Our Facebook family may have read (and celebrated with us…thank you, my darlings!) that Hannah had said her name to her lovely teacher <3  last school year.  Sadly, this hasn’t happened again.

But I’ve always lived in hope. Because if it’s happened once, it can happen again.

I’ve never heard Hannah’s voice, apart from her lovely sing song noises (Snowdrop call this verbal scribbling – LOVE that term!) although, I have to admit,  it’s not so great in the middle of the night…more like rather annoying!

So, whilst at Snowdrop, Hannah was being observed playing and doing her own thing by Andrew, the founder.  It was clear that Hannah had been sussing him out (as she does) for quite a while….often using her peripheral vision.  Whilst she may not acknowledge someone’s existence, she certainly knows what’s going on around her…she doesn’t miss a trick…especially when a bag of crisps is being opened!

Anyway, enough of the crisps…back to our news…

Hannah was mooching around, playing with toys and sometimes approaching Andrew and then moving away.  Andrew then walked up beside Hannah and said “Hello”.

Hannah replied, saying……

“Hello”

As clear as a bell!

I HEARD HER SPEAK!!!!!!!!!!!!!!!!!!!!!!!

OH, SWEET JESUS AND ALL THE BLESSED SAINTS!!!

THIS.  IS.  EPIC.

…and the most beautiful sound I’ve ever, ever, EVER heard.

And guess what I did?  I kind of froze.  Astonished.  “Did I just hear that Andrew?” I asked.

“Yes, you did” replied a smiling Andrew.

And whilst I anticipated all kinds of wonderful things happening when this FINALLY happened; no mariachi band burst through the door playing some jolly celebratory music, no-one jumped out of a cake, no streamers and balloons came floating down from the ceiling…there was just stunned silence and I stood, stock still, probably with my mouth open….and Hannah happily continued to play with the toys, blissfully nonchalant, as if a miracle hadn’t happened.

But it just had.

So, there you have it.

I heard my girl speak!

In my post ‘Expletive on a cake’, I promised that whatever word I heard her say, it’d go on a cake…even if it was an expletive!  So “Hello” is going on a cake and we’ll have a little party to celebrate too.

hello-cake

Photo credit: Photofunia.

But now I’m feeling greedy.  Now I hope that one word might join another and another and another and make a sentence one day.  We just need to get her the right support to enable her to do it.

 

Never say never, eh?

Right, who fancies a piece of cake? *grins from ear to ear*

Until next time

 

An incredibly happy bunny (Annie)  xoxo

 

This post is dedicated to Snowdrop…providing another little glimmer of hope and support, completely outside of a system that isn’t really working for us right now. 

Posted in Speech, language and communication, Syndromes/Special Needs, Therapy | Tagged , , , , , | 15 Comments