The 10 Year Challenge

I’ve noticed these 10-year challenge things floating around on the interweb recently and thought I’d use a similar theme for a blog post.

However, mine won’t be a “Ooh, look at us! weren’t we fabulously glamorous then…and we haven’t changed much, have we Social Media friends?….WELL??? HAVE WE???!!!” type of theme.

Ugh!

No, our life has changed.  We’ve changed.  Considerably.

These last 10 years have been a bit of eye opener…for lots of reasons…and not least because of a little girl who unwittingly brought along with her a life less ordinary.

So, here’s my version of the 10 year challenge…the then and now.  No glamour;  but plenty wrinkles, exhaustion, frown lines, a bad back, migraines and sprinkles of white hair (unsurprisingly, I’ve bypassed the grey!)

You ready?

Okay, let’s go…

 

 

Ten years ago…

 

I took life for granted

…and I certainly took sleep for granted!

I didn’t have to think about anyone else, except me.  I could nip to the shops, have a relaxing bath whenever, lie in bed until lunchtime if I wanted, drink wine and listen to music into the early hours.

The world, I believed, was my oyster.  Pretty much.

 

Before we became Mama and Papa Broccoli 

 

Ten years ago…

 

I never knew how it would feel to long for those ‘firsts’ – that first eye contact, first smile, first tentative swallow of solid food, first roll over, first time sitting unaided, first wobbly steps.

And, oh, that first hug!  Blissful.

…and I would’ve never anticipated waiting years for many of them to happen!

I guess I never appreciated how patient I could be…when I had no other choice.

I took simple things for granted

 

Ten years ago…

I’d never seen the smile that could brighten up the darkest of days

I’d never felt so proud

My diary was never as full

…nor was my head!

I never realised who my true friends were

I’d never appreciated a random text message, or a silly meme or a “Hi” so much

 

 

Ten years ago…

 

I’d never had to clean up so many bodily fluids (or solids!)…or wipe away sticky handprints

I’d never had to change bed sheets in the night…or sluiced as many clothes

I’d never heard my washing machine spin so much

I never knew that bubble baths and getting messy and twizzing around in the kitchen with a t-towel on your head could be SO much fun!

…and I’d never left the house with yoghurt in my hair!

 

 

Ten years ago…

 

My heart had never ached as much

I believed everyone possessed empathy.  I was wrong, so wrong.

I’d never been bitten, or kicked, or nipped, or headbutted

I never knew what strength I had – physical and emotional

I’d never cried so much – with joy or despair

I never knew how capable I would become

I’d never been as tenacious or fearless…or more fearful

 

 

Ten years ago…

 

I’d never listened to so much conjecture

…and I’d never challenged as much speculation or poor practice

I’d never researched or advocated or trusted my gut as much

I’d never had to restrain a child who needed medical intervention

I’d never felt my heart break a million times over when a child was hurting

I’d never realised how helpless I’d feel when I couldn’t fix the hurt

…and I’d never wished that it was me who was hurting instead

I’d never wiped away as many tears

I’d never lain in bed, anxiously counting the gaps in a baby’s breath; willing them to take another

I never knew how the sound of a medical alarm could generate so much fear

I’d never prayed for a precious life to be saved

I’d never received so much life changing, heart wrenching, painful news

 

Ten years ago…

I never appreciated how much someone could long to hear a little voice say “mummy”

 

Ten years ago, I never anticipated my life being like this

…and I never really knew what unconditional love was all about

But oh, I do now! ❤

Mama, Papa and Miss Broccoli  

Five years

 

Blimey!

 
Has it been five years since I took a deep intake of breath and pressed the publish button?

 
Why, yes, I believe it has!

 
I have exhaled since then, honest!…probably disappointing a few people along the way. Ha ha ha!

 
Yes, my people, MKLB has been cluttering up the blogosphere for five whole years.

 
Who’d have thought, eh?

 
I anticipated just writing a couple of posts (tops) and that’d be it.  I thought no-one would find us, no-one would be remotely interested, and it wouldn’t make a jot of difference to anyone…but they (you) did, they (you) are, I hope…and it SO has!

 
Huzzah! *throws hands up in celebratory fashion*

 
That said, time and other commitments restrict me from writing as often as I’d like, and I have recently considered putting the blog on hold as I’ve (rather foolishly *rolls eyes*) gone and blathered to our lovely MKLB Facebook family that I’m writing a book!

 
…A BOOK!!!

 
…WITH PAPER AND WORDS AND EVERYTHING!!!

 
The Book of Broccoli – the title’s a work in progress, much like the rest at present.

 
You see, I’m tired of procrastinating (in my head) about writing a book and not actually writing THE book. Plus, other people have been suggesting it for a while, so I need to get cracking.  Pronto!

 
So, there’s no turning back now, I’ve said it…out loud…that I’m writing the book.  This year.  Hopefully.

 
Erm…No *shakes head vigorously* let’s be positive about this.  Not hopefully, DEFINITELY!

 
…and fingers crossed, someone, somewhere may want to read it.

 
…and if no-ones interested…well…thinking optimistically, then at least it’s stopped me procrastinating and we’ll recycle the paper somehow.  Actually, given all the scaremongering going on about the apocalypse of Brexit, then I suspect we’ll be able to reutilise the paper in the loo…or to heat Broccoli HQ!  #genius!

 
So, the best laid plan is to chip away at it at night or when I can.

 
Much like blogging, I haven’t a clue what I’m doing, even though I’ve made plenty notes already.  So, in true Special Mama style, I’ll be winging it.  But hopefully, it’ll be an informative and easy read (maybe even amusing at times too!).

 
So, blog was put on hold.  But then one of our lovely Facebook family, hello Mark *waves*, left a comment on Facebook after I’d announced my intentions, which left me with a lump in my throat (I’ve got one now just typing this!) saying he hoped I’d still continue with the blog as it kept him going through the dark times.

 
Sometimes, I experience those dark times too (I’ve had a tiny, temporary blip this week…probably due to lack of sleep) and I’ve no doubt some others caring for a child with additional needs do.

 
So how could I neglect the blog when someone leaves me a message like that?
Someone reads my ramblings and it makes a bit of a difference. And maybe, sometimes, puts a smile on somebody’s face, uplifts them…if only for a little while.  Perhaps something triggers a feeling of being less isolated, takes their mind off what’s happening, what’s about to happen or whatever.

 
One of the reasons why I started the blog in the first place was to help people feel less isolated.

 
So it looks like I’ll need to carry on blogging!

 
Five years on and anyone would assume I’d be proficient at blogging by now. Umm…clearly not so; something comes into my head, I write, press publish, job done. It’s not rocket science (thankfully!).

 
But I have learned some things along the way and I did compose a ‘Top Seven things I’ve learned about blogging’ blog post…but as my future posts will need to be considerably shorter than the ‘norm’ here’s a summary of that:

 
(n.b. I know it probably should’ve been ‘top five’…or ‘ten’ things I’ve learned…but I’m not one to conform).

 
Since MKLB was born, lots more bloggers have come on the scene; sharing their stories, knowledge and experiences.  How wonderful! With diverse styles, helping to educate, raise awareness of their lives and the challenges they and their loved ones face. If you have some time on your hands and are interested, go check some of them out.  Education and awareness matters.

 
Thanks to the blog and social media, I’ve connected with many people from all over the world – from our CdLS global family, some fabulous awareness raisers, authors and other bloggers too…hello! *blows kisses*, parents who have children with other rare diseases or additional challenges, professionals, grandparents, members of the general public or whoever is interested in learning more…and they’ve celebrated Hannah’s achievements with us…and maybe, hopefully, had a laugh with us when things have gone a little awry.  That support and connection, my people, is priceless! The internet and social media undoubtedly has it’s ups and downs…but it provides me (and others like me) the reassurance that we’re never alone – even if our journeys are different.  Life can be challenging, there’s no doubt about that. And some days, in our worlds, it can feel a little isolating; pretty stressful at times too.  But there are people out there…willing to share their experiences and give advice or offering you a lovely warm cyber hug, a high five, uplift you, or whatever.  Sometimes, it can feel like the world is conspiring against you, that people are ghastly, opinionated, judgemental etc. – whilst being completely ignorant to the challenges you face in your life.  But then a person you’ve never met before messages you on Facebook and asks if you’re okay, because they haven’t seen you post for a while.  A gesture like that can change your mindset; gives you a gentle poke to remind you that there ARE nice people out there who do notice that you’ve been a little quiet and are concerned about you.  Thanks Stacey!

 
I’ve learned that I continue to be grammatically incorrect and write too much (you don’t say!).  Rumour has it that blog posts are expected to be succinct…and I’ve no idea who came up with that law.  A chapter of a book isn’t necessarily brief, so why should a blog post be?   And if there are some rules, sitting in a dusty cupboard somewhere, then we (Hannah and I) won’t be adhering to them! You’re welcome *bows*.  I’m far more entertaining when I swear…being rather fond of an expletive or two! (my friends will happily vouch for this).  And I’ve learned that I’d gain a far greater following by effing and jeffing my head off (and trust me, I could…easily!) but sadly I can’t. Soz!

 
I’m so grateful for the support we get from our followers. I like connecting with them and we learn from each other.  Raising awareness of Rare Disease is incredibly important for me and I’m content to continue to take up a tiny part of the blogosphere, just doing my own thing, slowly chipping away at raising that much needed awareness.  I don’t aspire to write about what’s trending at the moment, I don’t compare myself to what others are doing, I’m not ravenous for accolades. I’m quite happy just ticking over as I am.  But I need to get the word out there about CdLS somehow…and that’s where social media comes in.

 
Ah, the powerful but fickle finger of social media! I’ve learned SO much about THAT! Facebook is great – I can interact with people, share information or snippets of shenanigans and photos, celebrate those joyous moments…or just have a bit of a moan. It’s great! I’m lazy on Insta and totally useless on Twitter, so have given up for a while on there…but Twitter, oh twitter! Now that’s where I’ve learned how superficial the world of social media can be. When I first naively started out, I’d get a notification that someone was following me.  Great, I thought, more awareness raising!…and I’d thank them, but usually get no response.  But then a knowledgeable someone informed me how this stuff works – first, apparently, you follow people; expecting them to follow you back…muting them so they don’t clog up your feed…then, before you quickly unfollow them, jump onto their followers and follow them…then unfollowing them after a bit too. Ugh! No thanks! Oh, and as if that didn’t take up enough time, to gain more followers, you’re advised to leave comments on loads of other bloggers pages…so that they’ll follow you and in the hope they’ll share your stuff.

 
That’s not how we roll at Broccoli HQ, so we’ll give all that a miss.

 
So, my initial mission has been accomplished; I know I’ve made a difference – to members of our global CdLS family and other parents of children with additional challenges, carers AND professionals – and that properly gives me the warm fuzzies. It really does! And when another someone we’ve not yet met (hello lovely Kate *waves*) puts this comment on Facebook: “our life is so much better with you and Hannah in it”…that, THAT, my people, makes me want to carry on doing what I’m doing.

 
How could I not?

 

So, I’m off to write a book! *nervously bites fingernails*

 
Thanks so much for stopping by.

 

Until next time

Annie xoxo

Terms and Conditions

Or, otherwise entitled…

 

PACT-G

 

Credit: Photofunia 

 

Once upon a time; many, many moons ago, my parents bought me a piano.  It lived in my fathers study and alongside the weekly piano lessons, I was advised that I was expected to practice…for 2 hours a day *gasps*

Yes my people, TWO HOURS A DAY! *shouts*.

When the novelty wore off (pretty quickly), the most attention the piano ever got on a daily basis was when my mother vigorously polished the life out of it with Mr Sheen – that’s furniture polish, btw, not a man.  Consequently, it was a very clean and shiny piano.  But my father then got fed up of it in his study and it went to live (hopefully happily) in the local pub; perhaps ending its days being sung around by swaying, merry patrons, slopping their beer on it.

A similarly swift departure occurred when my Beagle, Sam, disappeared (not to the pub, mind) whilst I was at school one day, only to go and reside with a farmer…allegedly! #poorsam

Now, let’s face it, I was a kid.  I didn’t want to waste two whole hours every single day in solitary confinement!  At that age (in the olden days) all I wanted to do was my own thing and play out with friends, whilst anticipating being subjected to my mothers wrath when I returned later with dirty, scuffed, patent leather shoes (you can’t buff those babies up with Mr Sheen!).

I mean, come on, who sends their kid out to climb trees and generally mess about play with patent leather shoes on??!!! *slaps forehead*

(Or if it was raining and we couldn’t be bothered to go out, we’d make vile smelling ‘perfume’ out of squashed up rose petals or something we’d surreptitiously pulled up out of the garden)

…apparently we were considered rather posh in those days having a piano and study and patent leather shoes and whatnot, although you’d never guess if you met me now!

So I never became the best pianist.  Nor was I a child prodigy.  Obvs!

But perhaps if aforementioned (spotless and glossy) piano hadn’t ended up in the pub, I may’ve frequented my fathers study as and when the mood took me and had a little tinkle on the old ivories from time to time.  Those little tinkles could’ve increased to longer, more productive tinkles…resulting in (perhaps) me committing in my own time to developing my skills; if only to play for pleasure, for myself…or whoever would listen.

It would’ve been prudent to allow me to learn the piano on my terms, rather than it backfiring – resulting in me developing a resistance to conform to this parental expectation.

Hindsight’s a great thing though, isn’t it?  And we can all play the smarty pants and critique others’ parenting styles, can’t we? And blimey, if I was given £1 for every time I’d called out the judgements or been proffered ‘advice’ by people who had no idea whatsoever about parenting a child with profound additional needs, then that’d probably pay for a Baby Grand.

Many (many!) years have passed since my shiny piano got the eviction notice and only recently I considered treating myself to another one (although I guarantee it wouldn’t get polished!)…however, I’ve got FAR too many other things, more important things, to be getting on with at the mo.  Maybe I will one day though.  Hopefully.

So, where am I going with this?

Well, the aim wasn’t to belittle the well-meaning intentions of my dead parents.  Not at all!  I experienced a privileged and mostly happy formative early life.

No, what I’m intending to lead on to is how we, as parents, have the potential to get things wrong from time to time.

WHAT?

A PARENT, MAKING BLUNDERS? (yeah, plural)

HOW.  RUDE.

How distasteful of me to suggest that!

We’re all perfect, right?

Erm…Wrong!

 

By imposing our own expectations/aspirations/whatever upon our children – regardless of them being well-meaning – it has the potential to impact on our children.  It’s not rocket science, it’s #fact

Case in point and the reason for this post – here’s my totally epic parenting gaffe and how I was guided to put it right.  It turns out I’d been doing this parenting malarkey a bit wrong! *puts hand to mouth in shock horror*:

 

 

Someone: Erm…sorry, PACT what?

Me: PACT-G.

Someone: *looks baffled* PAC…?

Me: PACT. G.  It’s P.A.C.T. Hyphen G.

Someone:  *looks baffled again* What’s that?

Me: It stands for Paediatric Autism Communication Trial – Generalised.

Someone: Oh *looks baffled…again*

…and then I undoubtedly proceed (quite poorly) to explain what we’ve been up to for the last 12 months.

 

(Kept that quiet, didn’t we? *winks*)

 

You see, we’ve been involved in a very important bit of research – the PACT-G Study – facilitated by the University of Manchester.  Oooh!  But now we’ve completed said research, we can let the cat out of the bag and tell you a little bit about it.

(n.b. no cats were actually put in bags)

Early on last year (I think) Hannah was (finally) formally diagnosed with Autism.  Given the lack of support available (you don’t say!), her paediatrician signposted us to the PACT-G study.  Happy to ‘have a bash’ at anything if it helps, I made a call to the University.  Given Hannah has Cornelia de Lange Syndrome too I was concerned we wouldn’t be accepted onto the study.  But we were.  Phew!

PACT’s initial aim (I’ve pasted and copied this bit) was “to improve the social communication of preschool children with autism.  Caregivers were coached, using video-feedback, to interact with their child using strategies that facilitated communication development in the child.  This approach was found to be very effective in increasing the quality of parental communicative responses to the child, which in turn, led to increased child-initiated communications with the parent.

PACT-G therapy retains these effective elements; but adds new features to test specific ways to increase the transfer of child communication gains into everyday home and education contexts. The therapy begins with the parent at home and parental techniques are integrated into daily routines and play to assist generalisation of new skills development in the home setting.

In addition, the range of adults involved in training is widened to also include education staff in school settings.  This extends the application of the intervention into the primary school years. To date, autism intervention studies have largely been limited to episodic interventions, usually in pre-school. However, communication skills continue to emerge and develop beyond the pre-school years and social communication skills in the early school age period are strong predictors for later development.  The developmental nature of autism thus argues strongly for a developmentally sustained approach to intervention into middle childhood”

(Source: http://research.bmh.manchester.ac.uk/pactg/AboutPACT-G/)

So, it seems those child development theories from people like St Ignatius and Aristotle (clever blokes) such as ‘give me a child until he is 7 and I will show you the man’ stuff is a load of old twaddle – in my humble opinion.  Because Hannah started the research when she was 8 years old.  We subsequently spent 12 months completing the programme…and we’ve had some pretty impressive results from it – evidencing in part that someone doesn’t just stop developing after they’ve blown out the seven candles on their birthday cake.  (Actually, Hannah has difficulty blowing out candles, anyway)

So stick that in your pipe and smoke it Mr Aristotle and Saintly person!

 

Probably midway through the study, I had a lightbulb moment regarding my epic parenting gaffe.  Hannah was engaging more and more with me when I did nothing; rather than doing what I’d done for the last 8 years – using every opportunity I could to try and engage her, help her learn new things, aid her development.

It turns out I wasn’t really helping.  My bad.  More like hindering; probably making her anxious or overwhelming her too much at times and bombarding her glorious little brain which needed to process everything in its own time and on her terms, her conditions.

But, mirroring my own parents, everything I did was with the best intention.

…and with love.  So much love.

I learned that I needed to rethink again my expectations, adapt my behaviour even more and how I interacted with Hannah.  I had to step entirely into her world (even though I thought I’d done so already).  Let her take the lead.  Let her guide me.  I had to forget those mainstream theories about play and interaction between parent and child.  Often, I had to sit back…and wait…and wait.

Initially it felt a bit of an ‘airy fairy’ concept.  At times it felt like I was doing absolutely nothing…which I was…and that was uncomfortable for me.  I wanted/needed for her to feel that I was there for her; despite being there already.  But as the study progressed, I saw my little girl begin to blossom.  Her communication has improved and so has her ability to concentrate more, and she can sit for longer on an average chair.  Yay!

And nowadays, I can be observed being dragged around Broccoli HQ by Hannah to get the things she wants.  I’m now regularly told to leave her bedroom when it’s bedtime – this is usually achieved by Hannah forcefully pushing me off her bed (she’s strong!) whilst she points to the door.  Rude!

I jest, but these are huge, massive, glorious achievements in our world and I’m happy to be pushed and pulled around, if necessary.

It’s been hard going, there’s no doubt about that. But I’m SO very glad that we participated.  I’ll elaborate further about how we did it in the next blog post which will include her telling her dentist off and a fabulous something to celebrate what she’s achieved so far.

 

So, I suppose that’s all for now, my people.

Thanks for stopping by.

Until next time.

Annie  xoxo

Cringe!

Or, otherwise entitled…

Fish, chip and ketchup confetti

 

…butter wouldn’t melt! 

I’ve said it many times (and I’ll undoubtedly keep on saying it!)…parenting can be hard.  Really hard.

Add into the mix some additional needs and your parenting role gets a WHOLE lot more challenging.

…and, as a parent, there can be those completely cringe-worthy times…say, when your child takes it upon herself to lift up your t-shirt in public (yep, got THAT t-shirt!).  Or, um, I dunno, is required to do a lovely drawing at school of what the family did at the weekend – said artwork is then completed and proudly presented to an aghast teacher on Monday who observes a stick mummy (or daddy…or both!) lay seemingly comatose on the floor whilst clutching an empty bottle of wine, whilst infant siblings happily tuck into a whole box of coco pops for their lunch.

Yeah, that would be pretty cringe-worthy!…good luck explaining that one, parent people!

(But let’s not forget that parenting can be magical and wonderful and funny and just utterly brilliant too!).

 

So, gentle reader, that said, permit me to regale a little (understatement) *coughs* cringey incident of our own that occurred this time last week.

Picture this:  The Broccoli Gang are spending some time at (yes, you guessed it!) Broccoli HQ Cornwall.  It’s a beautiful warm day (yeah!  I know!  In October!…it’s probably down to global warming and/or Brexit or something).

Let’s go for a nice long walk.  We can have a little trot on the beach and have lunch out too!  We said.

Good idea!, we agreed.

So, off we went; Hannah happily tucked up in her special buggy – making her lovely little sing song noises whilst enjoying making attempts to kick out violently like some tiny little martial arts warrior at any unsuspecting passers-by whilst wearing her very hard AFO’s (orthotic splints).  A slightly cringey experience, but manageable.  We just pre-empted potential contact with strangers limbs and ensured a rather wide berth from all who approached us, so no-one was injured.  Huzzah!

Long walk had, trot on the beach completed (and obligatory roll around in the wet sand for Hannah…whilst mummy scoured said wet sand for any dog excrement or jelly fish or sharp things or whatever…like you do!), it was time for a spot of lunchingtons (that’s lunch, btw).

It’s too nice to sit indoors.  Why don’t we get fish and chips from Rick Steins café at Fistral and sit in the sunshine so that I can also ogle at the lovely, lovely surfers?, I suggested.  All were in agreement of this rather splendid idea (well, just Mr Broccoli…about sitting in the sunshine…not the surfers!)

We grappled with small and rather spirited small, but heavy, child; freeing her from her special buggy and carefully placing her on a grown up bench – daddy positioning himself so that if/when she spontaneously and violently threw herself backwards, she would be safe and no little heads would be cracked open and subsequent emergency medical attention required whilst on holiday.  Fabulous!

Sat there, in the sunshine, eating together, was lovely.  We were just like (okay, sort of) any other family out there that day.  Granted, Hannah did eschew her fork and chose to eat with her hands; whilst occasionally rubbing her lunch into her eyes/ears/face/hair/clothes/the table/us/a passing dog/anything else…but hey, she was feeding herself and she was happy, so that was all that mattered, really.

By this time, other people began to congregate for their lunch or a drink.  The outdoor seating area was pretty much full by this time and a handsome young couple (possibly dating, not sure, but looked a bit ‘loved up’ = so probably not married, yet) sat behind Hannah. (n.b as I proceed with this lengthy discourse, please remember this beautiful, probably loved up, young lady with freshly straightened, long, lovely golden hair)

All was well with the world.

Perfect!

…erm…apart from me repeatedly having to bat away twenty billion screeching birds – starlings and seagulls mostly – who made extremely persistent attempts to swoop on us (especially Hannah who enjoyed waving her food in the air! *sigh*) in order to taste Rick’s finest cod and chips.

…they weren’t daft!

At this juncture, I can’t exactly say that I was entirely relaxed!

Erm…not even moderately, actually.

A while later Mr Broccoli assumed that Hannah was making signs that she’d probably had enough lunch.

“Hannah, finished?” he asked innocently.

Oh…ha ha ha…Hannah was most definitely NOT finished…not by any means matey…she was just getting started!  Don’t ask her THAT!  Big mistake.  BIG! (he’s not had the practice, is as quick as me, or possesses ‘the knowledge’ like I have!)

I held my breath in anticipation and in a split second, tiny hands delved into the flakes of fish/chips/ketchup combo and then arms were forcefully ejected backwards, spraying aforementioned loved up young lady’s long golden hair/the back of her jacket with fried potato and sticky red sauce.

Oh sweet Jesus and all the Blessed Saints!

KILL ME!

KILL.  ME.  NOW!

You’ve seen confetti thrown at a wedding, right?  Well, just imagine fish/chip/ketchup confetti instead.

Yeah.  I know.

All those birds that’d been staring and swooping at us knew they were onto a right winner there and then…flying food!  HOORAH!

…it was like a scary scene from a Hitchcock film!

There were birds EVERYWHERE!!!

Plus, they seemed to have multiplied tenfold in a millisecond.

They swooped.  Golden girl swatted (whilst accompanying golden boy hung onto his beer.  Priorities!).  I cringed.  A lot.

…and all I wanted right there and then wasn’t the ground to swallow me up, but a great big seagull – the size of a pterodactyl – to come and pick me up and plop me into the deepest, nearest bit of the ocean (preferably then a lovely, lovely surfer comes to my aid before I turn blue or a shark ate me, obvs)

CRINGE, CRINGE AND TRIPLE WHAMMY CRINGE!

Profuse apologies and much grovelling proffered by both TOTALLY mortified parents ensued….whilst small child cackled with great delight and held no remorse whatsoever.

Cringe again.

Thankfully, golden girl had seemingly noticed we weren’t an ‘ordinary’ family, so to speak – squeals, AFO’s and special buggy probably being a pretty good giveaway and so she graciously brushed herself off, smiling…SMILING!!!…whilst offering us a “no worries”.

I can safely say, not everyone would react like golden girl (who knows, golden girl may well have a family member or knows of someone with additional needs personally or professionally, so perhaps she understood).  No doubt there’ll be times when other people, uneducated people, narrow-minded people with little tolerance for or understanding of difference react less favourably.  But we’ll cross that bridge/deal with them when necessary.

So yeah, that was pretty cringey.  But in the grand scheme of life, no-one died, no-one was physically harmed, golden girls hair didn’t fall out, the world didn’t end and a seagull the size of a pterodactyl didn’t plop me into the ocean.

…it was just an average day for a SEND family on their holidays!

(On the plus side, what appeared to be the entire avian population of Cornwall had a lovely lunch!)

 

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

Thanks for stopping by.  Much appreciated, as always.

Until next time.

Annie  xoxo

Invisible child

This needed to be written today.  I’ve no idea why.  Hope it makes sense.  Here goes:

A client

A case

A patient

A statistic

A budget

A diagnosis

A Service user

A name on a database

 

And to some, you are invisible.

 

But you are none of those, child.  Always try and remember that.

 

The pubescent boy, desperate to attain recognition, especially from his father; he doesn’t see your little face through the window; doesn’t wish to see the fellow human being contented just to watch the world go by; fascinating shapes and colours whizzing past your eyes.

All he sees is a convenient opportunity to assert a transient alpha male status; to demonstrate his authority amongst those current disciples of his, whilst they dawdle in a pack approaching the school gate.

Constantly and secretly guarding his own insecurities, he takes the opportunity to make those disparaging remarks and gestures at that bus going to that place.  Wholly confident that he’ll always be immune to vulnerability.  He’ll never be one of them. He’s strong, important, worthy…and entirely ignorant to the fact that no-one, even he, will ever be awarded immunity.

He laughs, they laugh.  They are the sheep and he is the momentary shepherd.  His status is safe for now.  He’s earned his badge of honour today at the expense of others.  Demeaning the vulnerable is praiseworthy.

To him you’re nothing.  Just something to mock.  You’re invisible to him, child.

But little does he know that you’re immune to this despicability.

Actually, he’s the one needful of the most pity; his parents have never taught him empathy.

Perhaps, one day, should karma tap him on the shoulder and whisper in his ear “who’s next?”, he’ll have forgotten about those times.

 

 

Crowds of people.

Rush, rush, rushing.  On they go.  Criss-crossing the pavements like busy worker ants.

Must get there.  Have to get that.  They need it, deserve it.

Wrapped up in their protective bubbles.

They don’t see you, they don’t want or need to see you.  They can purposely avoid eye contact when necessary.

Circumventing the contagious.

They brush past your wheelchair, their shopping bags swinging precariously close to your face. Any closer and they’ll catch you.

You’re invisible to them, child. 

You’re an obstacle in their way.  A hindrance.  A second wasted to hold a door open.  A millisecond squandered to make room on a congested footpath.  That time could’ve been spent more productively on their phone; taking selfies, seeking likes and admiration.

They’ll look through you or they’ll gawp.  But there are a minority who stop, who give a genuine smile, who take time to connect.

I fear though that compassion is on its knees and almost dead.  Viva indifference!

The majority don’t see you…

…but they’ll see the disabled parking space provided for someone who needs it most and they take it, without shame.

…they see the disabled public toilet and they take it.

…they see the lift that saves them time rather than taking the stairs…and they’ll take it.

And to them child, you are invisible. 

Ah, but if only they aspired to be like you:  accepting, kind, courageous, tenacious and SO much more.

The world would be a better place!

 

 

But to others you’re not invisible.  To others you are…

A smile that brightens up the gloomiest of days

A song in someone’s heart

The reason to live

Everything

…A beautiful, glorious and unique individual who is loved.  SO loved.

Worthy of being seen; of being given the opportunity to shine.

Child, you’re not invisible.  You never were and you never will be…not to the people who love and care for you.  Never invisible to the people that matter ❤

 

Let that sink in

There’s a Facebook post that seems to have been doing the rounds recently.  I can’t recall word for word, but it goes something like:

Remember how hard it was caring for a newborn?  Many parents of kids with additional needs have been doing that for the age of their kids…Let that sink in.

And it got me thinking…

(Oh Lord, she’s thinking.  Get the sherry out…quick!…it’s going to be a long one!)

Because I suspect, for many people, it won’t sink in.  Probably ever.

How could it?

Reason being that if you don’t live in our world, or actually, even if you dip in and out, it’d be a challenge to grasp just how challenging life can be sometimes. Add into the mix the emotional aspect and I’d say it’d be really, really difficult.

However gentle reader, permit me an attempt to expand on this quote (probably quite poorly… apologies in advance) in anticipation of spreading a soupcon of enlightenment…although I’m sure some parents and carers can elaborate even more (and/or better!) than I’ll do.

Ready?  Good!  Okay, let’s go…

Close your eyes and cast your mind back to that time (or try and imagine) you were caring for a brand new, teeny tiny baba up to, say, toddlerdom.

(Erm…actually, don’t close your eyes, please…you’ll need them to read on!)

 

So, you (or your partner) have just given birth.  A day or so later, the hospital staff say it’s time to take your beautiful new arrival home.  How exciting is that?

• For a baby with additional needs, it could be weeks, months and beyond before it’s deemed safe to leave hospital…and it can be incredibly scary for parents leaving the safety of hospital.
• All the books and degrees in the world can never really prepare you for parenthood, can it? and becoming a parent to a child with additional needs can throw you into a frightening and unpredictable world.  Regardless of how exhausted you’re feeling, there may be no rest for a woman to recover from childbirth; she may need to develop some additional knowledge and skills extremely quickly *holds hand up*.  You become not only a parent, but a nurse and other roles too.  Medical professional visits outweigh those of family or friends – who may reluctantly visit out of duty and, on occasion, vanish into the ether; perhaps only to resurface in the good times. 
• Sometimes baby will never come home.

 

Carefully measuring and mixing up formula feeds; washing and sterilising bottles and whatnot; all commandeering your once tidy kitchen surfaces.  All that feeding stuff takes up a lot of room doesn’t it?  And what a bind it can be having to cart those feeds around when you go out. (Unless you were able to breast feed, obvs!)

• Sometimes mummies of babies with additional needs can’t breast feed…for lots of different reasons. In my case, it was because Hannah couldn’t swallow and needed to be fed by naso-gastric tube (a tube up her nose and into her tummy) and given I wasn’t allowed to stay in hospital with her, my body went on strike; resulting in no other option but to rely on formula.  Smashing *rolls eyes*
• Sometimes eating orally isn’t an option. The only way for someone to receive nutrition may be through a tube – either directly into a tummy, or like Hannah was fed. Tubes, syringes, bottles, ph strips to aspirate and test the level of what’s brought up (to make sure you’ve inserted the tube into the tummy and not the lungs before you start the feed…so you don’t drown your baby!), medical tape to stick the tubes on a delicate little face etc, etc and etc.  They all have to be remembered and packed when you go out. 
• Imagine eating out; having to cart all that stuff around…for years…forever. Imagine the stares you’re subjected to from other diners.  That can be hard to ignore.   
• Imagine storing box upon box of feeding equipment (plus all the other stuff) in your house. Imagine having to wash and sterilise heaps of syringes day in and day out.  Monotonous, but necessary. 

 

Nappies and changing whilst out and about.  Ugh, it can be difficult, can’t it?

• Up to now, based on a minimum of 4 nappies a day, and if my math is right, I estimate Hannah’s already racked up 13,140 nappy changes! According to the NHS, children are usually potty trained by the age of 5.  So, up to now, we’ve pretty much developed our own landfill site….and no, I’m TOTALLY NOT going to be pressurised into sluicing and scrubbing re-usable ones.  Trust me, I have more than enough to do!
• Those nappies can’t be purchased in the supermarket. They’re delivered in boxes every few months. You have to store them all. They take up a lot of room.  Running out of them causes problems…we can’t afford to run out of them!
• Any parent of a child (including an adult child) exceeding the size of a baby changing table in a public restroom probably has a number of fabulous options (I’m being totally sarcastic, btw):

(a) Lay vulnerable person on wet and filthy toilet floor to be changed

(b) Leave person uncomfortable and soiled until such time as they can be changed

(c) Go home early

(d) Don’t bother going out

(e) Change child somewhere in car – risking injury to changer or changee. 

(f) Change child in standard toilet – risking injury and/or contracting some kind of disease. Ew!

(g) Change person in public space and risk possible arrest for indecent exposure. 

• Not all disabled people can use a regular toilet. Not all disabled people can use a disabled toilet.  Some people need proper changing spaces with a bench and hoist.  Some people are reliant on continence products e.g. nappies, all their lives. Some people rely on catheterization or other forms of supported evacuation. 
• Trying to clean poo out of pubic hair with just a pack of wet wipes can be a challenge…FACT!

 

The illnesses; all those sniffles, vomiting and obscure rashes.  Those trips to the GP or calls to the health visitor. Those little preoccupations about sterilising everything and hoping people didn’t kiss your baby and spread their germs.

• How about caring for a child with a compromised immune system; where even something like a minor virus could develop quite quickly into a life threatening condition. How about sitting by a hospital bed, feeling completely helpless.  How about daily home visits from medical professionals; teams of people in and out of your home.  
• …or how it feels to love and care for a child with a potentially life limiting condition…or having no diagnosis at all and desperately needing answers.  
• Aspirating, massaging, stretching, suctioning, researching, sterilising, medicating, timing seizures, turning, bandaging and so on…and so on – just an average day for many a SEND parent.

 

Picking baby up, putting baby down, bending over the bath, lumping that changing bag and pram in and out of the car, carrying baby up and down the stairs.  On and on and on it goes.  Day after day.  Hard, isn’t it? All that weight.  It can certainly take its toll on your back.

• Try doing it with an older child or adult who uses a wheelchair or special buggy. With a person who can’t weight bear or who can’t understand or predict what’s happening.  Try picking a child up whose body weight doubles when they go rigid and spontaneously throw themselves backwards whilst you’re trying to place them into their car seat or carrying them.  Many of us worry about our backs giving in and being unable to care for our loved one.  We can’t afford that to happen. Our back-up care (pardon the pun!) is often either limited or non-existent.   

 

Prams, baby bouncers, baby baths, cute little potties, walkers, safety gates (Oh, the gates!), play pens, those drawer and cupboard locks designed to keep tiny exploratory hands out. Your house is probably unrecognisable, right?

• Nine years on and we still have gates. Three of them, actually!  And our drawers and cupboards still have locks….and those little finger trap things for doors…oh, and the socket plugs…and…erm, okay, I’ll stop now. 
• Changing beds, shower chairs, potty chairs, specialist seating, rollators, walking frames, specialist beds, hoists, stair lifts, ramps. Adapted bathrooms, wheelchairs, special buggies, monitoring equipment, perching stools, blah, blah, blah. Oh, we know all about unrecognisable houses! And when our kids get bigger, so too does the equipment, probably; whilst our houses stay exactly the same size.   

 

There’s no time for yourself.  Sometimes you feel like you’re stuck in the house.  You’re unable to have a wee in peace. Date nights are rare or non-existent.  You want to feel like an individual in your own right again. Do the shopping in peace.  Clean your house in peace.  Clean yourself! You want the kids to stop whining, stop asking for everything, stop fighting, stop bouncing off the sofa.

You.  Want.  Peace.  And.  Quiet.

• Yep. All that.  Probably. 
• But some parents would give anything to hear their child speak. They’d be delighted if their children whined or repeatedly demanded something…and they’d never tire of it.  (Erm…okay…maybe I would.  Just a little bit)
• Some parents would give anything to have their child move a limb or be able to hold their head up. Stepping on discarded lego or bouncing off the sofa is a dream away.  Immobility is for life, mobility can be lost. 
• Some parents are subjected to repeated and unpredictable violent outbursts from their children and some children harm themselves – biting so hard it breaks the skin, pulling out nails and hair, banging their heads. I can’t begin to tell you how heart-breaking it is to watch your child harm themselves. 

 

Remember peering into their cot or going into their bedroom just before you went to bed?  Remember checking to see if they were still breathing? Remember that monitor bleeping in the middle of the night and causing you angst?  Remember not having a dark bedroom because of the light from the camera monitor?

• We may rely on those monitors for a lifetime.
• We may never get to sleep in our own bed again; lying on a makeshift bed on the floor to keep our precious ones safe at night is what we may have to do now.
• Or we may lay in bed, anxiously counting the gaps between those shallow breaths.
• We may pray that our child wakes up in the morning; something that someone else may not even give a thought to, may just take for granted.
• We may have to feed or turn or medicate or suction our child in the night. Every single night.  Every.  Single.  Night. 
• We may never get a restful night’s sleep again.

 

So yeah, I’m sure we’d all agree that for most parents parenting can be hard; really, really, REALLY hard sometimes (if you take your role as a parent seriously, obviously), and that’s regardless of whether your child has additional needs or not.

We all know it can be exhausting too.

And for some of us, physically caring and advocating for our children may continue right up until our own deaths.   But whilst life can be extremely challenging, there are also memorable, magical times when it can be breathtakingly beautiful; the times our hearts could burst with overwhelming love and pride; the times we never take for granted; the memories we’ll cherish forever.

Please let that sink in too.

 

(Oh, I could’ve blathered on Ad Infinitum in this post, but I’d better stop now.  Bravo you if you managed to get this far!)

Thanks for stopping by

Until next time

Annie   xoxo

Alpacalicious!

There isn’t much opportunity for the residents of Broccoli HQ to do anything spontaneous these days.

Well, discounting stuff like spontaneously falling down, impulsively throwing yourself backwards with your eyes closed, biting and other generally hazardous shenanigans (btw, I’m referring to Hannah here, not me after chugging a few gin and tonics, just so we’re clear!).

No.  Referring to spur-of-the-moment stuff; I mean going to new places and/or doing new things.  Because, going ‘off piste’ (so to speak) can throw up all kinds of bother for a child, like Hannah, who lives with a rare genetic syndrome, autism and other profound additional needs.

So, seeing as we were about to embark on an adventure by going to a new place and doing a new thing *gulps*, I’d literally been preparing our girl for a few weeks…looking on you tube, showing her photographs, saying the word, signing the word, blah blah blah  (you get my drift, hopefully).

Oooh, I was REALLY excited about this!

…I had everything crossed that it wouldn’t be too much for Hannah;  that she’d not shut down, zone out and find it all too much to cope with!

Still, the deed was done; all was booked and organised and we were on our way.

There was no going back! *gulps again*

(Well, we could’ve gone back, if we’d have needed to.  That sounded a bit too dramatic.  But this was either going to be a really, really, disastrously bad idea…or a magical experience!)

 

So where did we go then?

 

Well, we went to the Lingholm Estate; about a mile away from Keswick in the Lake District to take a couple of alpacas for a walk…you know, like you do on a Sunday morning.

(For our friends across the globe *waves* the Lake District is a truly beautiful place, now a world heritage site; home of…well, erm…lakes (obvs!) and mountains, quaint villages, kendal mint cake and so forth)

(…and sometimes some rain)

So, given the inclement weather predicted, we packed the Broccoli HQ jalopy to the hilt with waterproofs and off we went to meet Annie (not me…I wouldn’t meet myself, would I?) – Our very lovely guide from Alpacaly Ever After.

I’d already given the ‘heads up’ about some of Hannah’s needs, so Annie knew which alpacas to match us up with.  And after a very informative and interesting briefing (including only stroke the neck…very important!), it was time to meet our first walking companion.

…and, for me, it was love at first sight!

Here was Ziggy; the Alpha male of his tribe. A light haired 4 year old, blue eyed beaut.  And I fell in love with him even more when Annie told me he was completely deaf, partly because Hannah has moderate hearing loss…oh, and blue eyes.  (That’s just about where the comparison stops though as Hannah can’t run up to 30mph or kick foxes like he can.  Erm…actually, she’d give it a try!).

And then came Inca.  He’s twelve years old, smaller than Ziggy with dark hair, but equally scrumptious.

We had to walk with two alpacas because they don’t like walking on their own.  And most parents of children with additional needs who use wheelchairs and buggies know that that could’ve been a bit of a logistical nightmare – with two alpacas on a lead and having to push Hannah around too.  However, for Annie, that wasn’t a problem at all and she very kindly stepped in and helped out.  Thanks Annie *blows kisses*.

Harnesses and leads on (for the alpacas, not us), Hannah tucked up in her special buggy, off we went around the estate where Beatrix Potter spent many a holiday…and where she was inspired to write some of her wonderful stories…and I can understand why! What an enchanting place it is along the banks of Derwent Water, where there’s all kinds of lovely vegetation and fairy-tale-like fungi and wildlife.

…and the sun even came out for us.  BOOM!

…although not too sunny in this photo

Annie advised that, naturally, Ziggy and Inca would need to get used to us, but a good indication to them feeling comfortable, would be that they’d start to eat (they have three stomachs…yes, THREE!…so they eat a lot.  Actually, I know of some humans that probably have 3 stomachs too!).  I’d guesstimate that Ziggy took a couple of minutes, Inca followed suit seconds later.  So that was a relief.

…and although Hannah didn’t join them by chomping on the grass and beautiful vegetation around us, it was evident by her eye contact and fascination and squeals of delight that she was entirely comfortable and a bit smitten too.

Phew! (all that preparatory work did pay off in the end)

Hey, if Ziggy doesn’t wear shoes, then I don’t see why I have to! 

And throughout our (totally accessible in a special buggy) journey, Ziggy and Inca had a good old chomp and scratched their undercarriages on their preferred trees (oh, and me…thanks Inca!).  Our boy Ziggy didn’t even flinch when Hannah stroked him and sneaked in a bit of a nip or two (actually, if Hannah ever nips you, take it as a compliment.  Once you’ve got over the excruciating pain).  Ziggy and Inca (and Annie) were very patient and made our experience a rather emotional (observing Hannah engage and connect so well with them) and a truly magical one.

I like you…so I’ll give you a little bit of a nip

An hour and a half later, we were back where we started and it was time to give Ziggy and Inca some special supplemental alpaca food and with a little support and encouragement Hannah also participated in feeding time…although some of it went in her mouth (no surprise there then!) and much of it landed in her special buggy…but that didn’t deter Ziggy from hoovering it up.

Om nom nom! 

Some more chats and strokes and photos later, it was time to say adios.  And so, with a heavy heart, we said farewell to our new furry friends who returned to their field to have a good old tustle with their other pals.

There’s much published about the various therapeutic benefits of animals for children (and adults) with additional needs.  And after observing Hannah with Ziggy and Inca, I’ve no doubt whatsoever that she’d benefit from being around these utterly glorious animals.  So will we be visiting again?  Oh, try and stop us!

…it’s just a shame Ziggy and Inca can’t come over to Broccoli HQ for a sleepover sometime.  I’m sure Hannah wouldn’t mind at all if they bunked up in her room!

The caption that kept springing to mind for this photo, was “I’m just a girl, standing in front of a boy, asking him to love her” (well hey, if Julia Roberts can say it to Hugh Grant!).  Hannah was seemingly rather infatuated. 

 

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

Until next time

Annie xoxo

 

This post is dedicated to Ziggy and Inca. 

Oh, and if you’d like to know more about Alpacaly Ever After, here’s the link.  Go check them out:

https://www.alpacalyeverafter.co.uk/

 

 

 

 

 

50 – grenades and glitter

 

“Well, can I just say, you don’t look 49” she said.

“Why thank you very much” I replied, whilst standing in front of her, completely naked from the waist up.

(Fear not gentle reader, you HAVE clicked on the right blog and not something…well…*coughs*…a little bit fruity!).

Btw, I don’t make it a habit of having casual chats with people whilst exhibiting my bare hooters; it’s not exactly de rigueur, is it? So I guess I’d better explain, hadn’t I?…

You see, I’d just had my annual mammogram (if you need one, I’m urging you to go.  I’ve had them for several years now.  It’s just a quick squish, don’t be scared) and was beginning the process of tucking everything back in its rightful place whilst agreeing that, no matter what the results, it could wait until after my 50^th birthday – which is in a few days’ time.

Yes, my people, 50!

FIFTY!

THE.  BIG.  FIVE.  O.

Ten x five = fifty

Five decades.

Half a century.

*gasps*

So, I’m now of the age where I’ll get targeted for all kinds of stuff:  coach holidays to the seaside, funeral plans, stair lifts, burgundy sheepskin slippers with Velcro flaps, great big thermal knickers that go right up to your armpits.

…Actually, the slippers and big knickers do sound rather appealing!

Even a few years ago I recognised that I’d reached that time in my life where many professionals I came across looked like they were on their weeks work experience from school and still got pocket money from their parents (perhaps they do!)

…or that I am, actually, of the age where I could be their mum! *rolls eyes*

…or, made huge gaffs by assuming people were the same age as me or older, when they were actually younger…whoopsy!

But still, people continue to comment that I don’t look my age.

Which is sort of nice.

But what does 49 or 50 look like, really?

Kylie Minogue…she’s just turned 50.  So’s her Neighbours on screen husband, Jason.  Celine Dion, Daniel Craig (ding-a-ling!), Naomi Watts (who my mate, Ian, says I’m the spits of…can’t see it myself, but hey, always happy to receive a compliment), my bestest pal Christine and my relative Jacqueline.  All 50.  All unique.  All lucky to be on the planet for this long.  Many people don’t get that opportunity.  My daddy was only 4 years older than me now, when he died.  So you won’t find me crying in a corner and rocking just because I’m 50!

Throughout my life I’ve struggled very much with ‘me’ (both aesthetically and internally), but since Hannah’s birth, these last nine years have shaped me to be who I am today – reasonably comfortable in my own skin; self-confident enough now to discard anything and anyone that drains me; no longer scared of complimenting myself; completely apathetic to those who dislike me (their circus, their monkeys); motivated; still quirky (apparently, thankfully) and much, much more.

…including (the most important one) being a damn good mummy.

Life has undoubtedly been a challenge.  One big, humongous challenge…which over recent years has made me sit back and evaluate how I’m living my life and I.  It’s thrown some blinding curve balls our way; bereavement and loss and pain and trauma and beauty and gloriousness in completely unpredictable peaks and troughs.

Almost a decade of grenades and glitter!

..but I’m a survivor!

And let’s face it, many of us don’t travel along this thing called life without a few bumps and bruises, do we?

So, I’m rambling again (apologies), for the purposes of this post – seeing as I’ve neglected the blog for a long, long time and have a few minutes to rattle something off – for what it’s worth, here’s my ten (very tongue in cheek) top tips for that youthful look of mine:

(bearing in mind that I am the parent of a child with significant disabilities!)

Ready?

Good.

Excited?

You ought to be…

 

ANNIES TOP TIP #1

Ensure sleep deprivation as regularly as possible. Sleep is overrated.   The beauty mags will tell you that 8 hours beauty sleep is required to maintain optimum health and a youthful look.  Ha ha ha ha ha…ha! *clutches tummy*

 

ANNIES TOP TIP #2

Moisturise…erm…*scratches head to recollect*…once a month…or…when you can remember…or when it’s sunny and you have leg dandruff.

 

ANNIES TOP TIP #3

And you can forget that costly wrinkle cream too.  They won’t shift those deep scowl lines and frowns caused by years of having to deal with really silly people, their agendas and the absurd things they say and do (or don’t do!)

 

ANNIES TOP TIP #4

Shower…quickly.  Very quickly.  There’s absolutely no time to languish in a bath!

 

ANNIES TOP TIP #5

Get your hair cut properly, say, twice a year.

 

ANNIES TOP TIP #6

And whilst we’re on the subject of hair, let’s talk mono-brows.  Just pluck at your face when you’ve had your fringe cut.  That’ll do.

 

ANNIES TOP TIP #7

…And beards.  Oh Lord, the beard!  Why did no-one tell me about ‘the beard’?  I know beards have been ‘on trend’ for several years now (time for a change boys), but that’s for the fellas!  You need to pluck that…or join a circus.  In fact, my friend Kevin has always maintained that I was stolen from the circus…he may have a point!

 

ANNIES TOP TIP #8

Forget manicures. WHO has time for THOSE!? Anyway, you’ll only chip those expensive talons lumping a wheelchair or piece of equipment around…and you need short nails for all those delightful nappy changes…hygiene and all that.  Get the clippers out, then file those babies down so they’re not sharp.  That’s enough.

 

ANNIES TOP TIP #9

Eat.  When you can remember to prioritise yourself.

 

ANNIES TOP TIP #10

Exercise…ha ha ha ha…ha!  No, don’t bother.  You’ve totally no time for that.  You get enough work outs as it is – lifting, carrying, running around.  That’s sufficient.

 

Hopefully you realise that, from the above, I have no magical remedy to looking younger than your chronological age.  And really, in the grand scheme of things, does it REALLY matter?

All I’d say is…

Be you.  Be comfy in your own skin.  Love your bumps and scars and wobbly bits all the other bits that we’re told we should cover up, shave off, plump up, cut off, pull out or whatever.  And try to love WHO you are, not what you look like and most definitely don’t make the massive gaff like I used to do of basing your perception of you on what others think. You are you.  Unique.  Lovely.

Try and like yourself…both inside and out.

…and if you can love yourself too, then you’re onto a winner!

Women, especially, use the “she loves herself” quip as some kind of catty, derogatory remark.  But actually, I think we’d all probably be better people if we lifted each other up and loved ourselves a bit more…and equally, were a little bit more childlike – accepting of everyone, funny, silly, perceiving life as one great big adventure.

…because none of us are getting out of here alive!

Btw, just to be clear, I’m not 50 in this photo! 

So, that’s all my people.  I’m off to celebrate life.

Happy Birthday Me…you quintastic woman, you.  You are TOTALLY splendid and you’ve worked hard to get where you are, so don’t let anyone tell you otherwise! ❤

Until next time

Annie xoxo

 

This post is dedicated to me…obviously!    

 

Happy Birthday Hannah – 2018

Hello Tiger,

Mummy’s been a bit lackadaisical on here, so I thought I’d write you a blog post, because – as if you didn’t know already – you’ve had another birthday.   Hope you don’t mind me sharing this with everyone (bit tough if you do though).

So, how did you get to nine?

NINE!

I know!

Now, I’m probably going to sound like a broken record here, but WHERE did all that time go?

It feels like only yesterday when we were here…

Your first Christmas

 

…and then here…

dragging yourself across the floor (you had mastered beautifully getting one arm out of your onesie) whilst wearing lipstick…because the speech therapist suggested it

…oh, and here…

your first day at school…not sat very lady-like on the school bus 

…here…

a gorgeous days photoshoot with our friend Janet Broughton…and you discovered dandelions…and that you could put them in your mouth! 

And we’re here…

not best pleased that mummy and daddy are in the photo

Blimey!

…in the blink of an eye!

But every single day (on your special day it was 3287 to be precise) I’ve never taken for granted that you’re here.

Never!

And those 78,888 hours (or thereabouts) have been filled with lots of different emotions and experiences.  Many of which I’ve learned a great deal from.

Hannah, I’ve said it before, but I’ll say it again…you, my precious one, have been THE greatest teacher of life I could have ever wished for.

And you unwittingly taught me ALL about unconditional love.

So, thank you my darling!

A while back, I was asked about all your medical stuff and then (refreshingly) was asked to describe YOU…Hannah…not the syndrome, not the autism, not any of the other stuff…YOU.

Where could I start?

How could I possibly sum you up in just a few sentences?

The thing is, I couldn’t.  I can’t.  Because you have so many glorious layers.  But for the old memory bank and for the purposes of this post, I thought I’d try and give a tiny pen picture of the YOU right now.

Ready?

Okay, let’s go…

You’ve blossomed this year – proving some of your harshest critics wrong again…that’s my girl.  Keep going kiddo!

Despite still being tiny, you still make your presence known.

You’re so inquisitive and feisty and tenacious and still have that remarkable zest for life.  Nothing stops you! And you see life as one great big adventure.  How wonderful.

…although you still scare me with your antics!

You’re funny, SO funny.

You’ve started to demonstrate through your play that you DO have an imagination…although I never doubted that.

You’ve worked hard this past year too – wearing your splints was so traumatic.

not a happy bunny 

Now, you’ll (mostly) tolerate them (you’ve mastered how to get them off too).  Well done you!

And now you’re a water baby – initially frightened to get in the school pool, you managed to get across the whole length.  Go you!

You give more eye contact.  You’re signing a little more and I love that you can sign ‘daddy’ and, on the very rare occasion you sign ‘mummy’, you call me ‘raisin’ instead.

I’m more than happy to be your raisin!

Hannah, you could teach a lot of people many important things, if only they got to know you.  You’re accepting of everyone regardless of their differences – you don’t discriminate.  You’re not greedy or demanding of anything…you’re perfectly content with what you get.  And the things you really need can’t be bought.  You’re not cruel to others.  Life is for living – it doesn’t matter if you’re messy, if you eat with your hands, whether your hair is perfect or if you just want five minutes with your frock over your head.

just having five minutes, mummy

You don’t aspire to be anyone else but you…and that’s just how it should be, because YOU are perfect just the way you are.

…and those pitying stares we get…well, we don’t need pity, do we?  I think there are plenty other people without disabilities who need it far more than us!

 

Well kiddo, I’d better wrap this up (apparently, in blogging land, you get sniffed at for writing too much…me? bothered? nah, not in the slightest! we do our own thing, don’t we.).

Hannah, you are loved.  SO loved.

Keep on shining.

Happy, happy, happy birthday little mouse!

I hope you enjoyed your day.

 

“And I’d choose you; in a hundred lifetimes, in a hundred worlds, in any version of reality, I’d find you and I’d choose you” (Kiersten White; The Chaos of Stars)

 

Forever,

Mummy

XXX

40 something sleeps

So, that’s it for another academic year in the UK.

The summer holidays have commenced!

And there’s no doubt there will have been lots of mascara run today and tissues crumpled as children leave to commence their next journey onto high school.

(When our time comes, I will need sedating and/or be found shaking and sobbing uncontrollably in a corner whilst swigging neat gin out of my handbag at the leaver’s assembly. Probably)

But a school doesn’t comprise of teachers alone.

…and whilst I’m so, SO grateful for all of their support, this post goes out to every single member of staff that helps Hannah in school and on her educational journey.

So, a huge BIG thank you from Broccoli HQ…

For feeding a hungry tummy.

For wiping tears away.

For your soothing words and gentle touch.

For your patience (not only with Hannah…but me too!)

For your genuine pride. It’s evident you care.

For acknowledging her and saying hello in the corridor…even if you’ve never worked with her before.

For keeping the building safe.

For keeping our kids safe.

For noticing when something isn’t quite right.

For your creativity.

For getting her safely to and from school…but not just that; for learning how to sign “good morning”, for letting her drive the bus (well, sort of), for your help, for your care and making sure she’s comfy and having fun.

For your thoughtfulness…that often brings a lump to my throat.

For those in the ‘engine room’ – the Big Bosses – better give them a mention…they’re watching me! (God, I hope they didn’t read the one about the time I went for a cervical smear and nearly chopped the doctor’s hand off!) *gulps*, the admin ladies and receptionists who keep the wheels turning. The people that greet us with a welcoming smile.

For agreeing to give new things a ‘go’.

For going out of your way.

For the fun!

For the messy times and the quiet times.

For getting to know her strengths and needs.

For believing in her.

For (mostly-ish) not letting her get away with murder.

For the massages and the foot spas – and that’s just for the School Governors! Kidding. (Totally jealous, btw!)

For structure and routine…and boundaries.

For ensuring that when I answer the phone, the first thing you (mostly) say is “it’s okay, nothing to worry about”

For the trips out.

For your persistence…and gentle persuasion.

For listening.

For co-ordinating.

For your honesty and openness.

For understanding.

For asking about her.

For the photos and messages that give me that much needed glimmer of her day.

For helping her to SHINE.

…and SO much more.

I hope those forty something sleeps are restful ones.

I hope the sun shines for you.

I hope you have fun and make some beautiful memories with your own children, your loved ones…or, in fact, just for yourself!

…and when those forty something sleeps have come to an end, she’ll be waiting for you…and no doubt waiting to cause a little bit (okay, a lot) more havoc.

They say it takes a Village to raise a child. So thank you for being a significant part of our village.

With love from Broccoli HQ xoxo