I couldn’t let the week go by without doing a post, especially as The (baby) Floret was fed by tubes.

I’ve written about this before and mentioned that, initially, it was a scary thing to do. My mum (a former Ward Sister) remarked that, if she’d been in my position, she wouldn’t have been able to change the tubes on me, despite doing all kinds of invasive procedures for her patients over her years of nursing.  But I’m pretty sure she would have, if I’d have needed it. But perhaps if it’s not your child, then there’s not the emotions attached…I think that’s what she was getting at.

You’ll probably know that lots of people – babies, children and adults – rely on different ways of feeding/getting nutrition.

If you’ve ever had the opportunity to watch a parent how they do it (without staring, obvs!), and, if this was a ‘seasoned’ parent, you will most likely see them conducting this procedure like it’s second nature. With practice, it usually gets easier.  I guess it’s like most things – practice makes perfect and all that.

…but, we mustn’t forget that, with a naso-gastric tube, inserting the tube is an invasive procedure with risks.  

I anticipated, once Hannah was born, I’d either pop a hooter out when required or mix up a bottle of milk and give it to baby – checking the temperature of the milk, winding afterwards etc. It’d be easy once I got the hang. Oh yes.

But destiny had other ideas for us. Hannah had a cleft palate, hardly any chin and definitely no gag reflex. I was told she had another condition called Pierre Robin Sequence.  Feeding, for us, initially, necessitated using a tube and then gradually introducing milk orally via tiny spoons, then bottles – increasing and logging the amounts of milk taken. 

Feeding whilst out and about was tough.  I got the hang of packing everything (you can’t chance leaving something out!), but, for the most part, it was the stares that were the most difficult. Naturally, people are curious, I get that.  I respected the people who asked questions and tried to answer as best I could. But there were a few people who’d (clearly) never seen someone being fed like this, who would, at times, look absolutely horrified, but couldn’t stop staring.   

…and that was about as helpful as a waterproof teabag!

I won’t lie.  I felt like flicking them the ‘V’s’. I tried to shield Hannah from their view.  When I got fed up and more experienced, I just carried on and either tried to ignore them…or gave them one of my extra special stares.

Education is key.

So, in this post, I really want to big up all the parents who’re starting out on their feeding journeys…and the ones who continue on their journey.  The seasoned ones make it look easy, but there is a skill to it. If that tube gets pulled out (as it often did with Hannah!), it has to be replaced. 

…and guess who had to replace it when Hannah pulled hers out?  Yours truly. Obviously!

Hannah, naturally, didn’t much appreciate having this procedure done. And who can blame her? So she fought me…and SHE.  WAS.  STRONG! A professional advised me to swaddle her in a towel. And that worked well, however, I needed two other pairs of hands to do all the other stuff.  It often ended in tears (mine). But I got used to it.

So, I decided to attempt to relive my days of replacing tubes and feeding and whatnot to let people know what was involved for us. To highlight that it isn’t easy. That, alongside ALL the other challenges you have to tackle, all the appointments you have to attend, the therapies, trying to hang on to some semblance of ‘normality’ (whatever that really is) – like playing, cooking, and just getting through the day (and ALL the other stuff), it’s time consuming.

N.B. I shouldn’t have to spell this out, but…THIS IS ABSOLUTELY NOT ADVICE FOR ANYONE ELSE ON HOW TO DO IT. It’s just how I did it.


1 x feeding tube

1 x pair scissors

Medical tape (not Sellotape or masking tape!)

Milk formula (prescription – smells awful)


1 x Bottle


1 x Ph strip

1 x towel

Nerves of steel

Tissues (for crying afterwards…possibly)

1 x baby

(If you’re out and about, don’t forget ANYTHING…in fact, pack double…with the exception of the baby.  Just take the one)


Prepare everything beforehand.

Mix awful smelling formula with water. Warm.  Check temperature!

Carefully remove existing tape and tube, pulling slowly from nose.

Measure feeding tube from sternum to nose to ear, cut excess off.

Cut tape in preparation.

Wrap wiggly baby in towel.

Insert feeding tube into opposite nostril (than used previously), slowly guide tube into nose and, hopefully, down into tummy.

Once it’s in the right place, attach tape to cheek to secure. Tube will sit over top of ear.

Attach syringe to feeding tube, aspirate fluid.

Put fluid on Ph strip and check carefully!  Ph strips help to indicate whether the tube is in the lungs or stomach.  You REALLY don’t want the tube in the lungs!

Try and keep calm.  Try and keep baby calm. Breathe!

If it’s safe, attach syringe to tube. 

Carefully pour milk into syringe and start to feed.

Once feeding has finished (which will probably take FOREVER), remove syringe and ensure attached cap is closed over tube.

Document how much milk was taken.

Use tissues if it was a stressful tube change.

Give cuddles.

Repeat process every 4 hours – 24/7

So if you come across a scrumptious tubie and their parent, cut them some slack.  Give them a smile if they’re out and about and feeding their loved one (don’t stare. It sucks)


#mykidlovesbroccoli #feedingtubeawarenessweek #cleftpalate #tubefed #tubie #SENDparenting #SEND #disability #specialneeds

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Book: Cornelia de Lange Syndrome – A shared journey


Happy New Year and all that.

I have some exciting news for you. Well, you may already know if you follow us on Facebook, but I’m sharing in case you didn’t.

There’s a new book recently published called Cornelia de Lange Syndrome – A shared journey. Written by families for families.

You can purchase it on Amazon. But if you’re struggling, contact the CdLS Foundation UK and Ireland and they may be able to assist.

I’m SO very proud of this book. And, if I say so myself, it’s a fabulous, insightful, inspirational read (I may’ve had a little hand in putting it together).

It’s a book that I would’ve liked to have read when Hannah was first diagnosed.

And whilst it’s been written for families new to the CdLS world, I’m pretty sure that it would be an excellent resource and a source of education for professionals working in education, health and social care.

In this book you’ll see the individual behind the diagnosis…not just the diagnosis! You’ll also get first hand accounts from individuals diagnosed with CdLS and their parents/siblings/grandparents and others.

Many of us have probably searched the internet when our children were first diagnosed and stumbled across some nonsense. So I’ve also included THE go-to resources for anyone who wants to know the facts about CdLS, because, unfortunately, there’s quite a bit of misinformation floating about on the internet…and there’s nothing more dangerous than misinformation when it comes to health! *sigh*

I want to give a BIG shout out to everyone who contributed to this book (too many to name, sadly). I know how difficult it can be to put pen to paper/finger to keyboard and write about your experiences. Some people may have never done it before…but they did, because they wanted to help other people just starting out on their own journey.

…and I’m SO very proud of them!

I’d be really grateful if you could help us spread the word about this book.

So, that’s it. That’s all I have to tell you for the moment. I’m very much hoping I’ll be able to get my act together and finish off The Big Book of Broccoli in 2022…however, I’m not holding my breath; I’ve procrastinated and faffed about for far too long. It needs to be done. But I’ll do my best – when my mojo returns and time permitting!

I hope this year is kind to you all.

Much love

Annie xoxo

p.s. Oh, forgot to mention…it’s our anniversary. My Kid Loves Broccoli (the blog) turned 8 years old on the 1st January. Huzzah! Happy Anniversary to us.

#cdls #corneliadelange #corneliadelangesyndrome #mykidlovesbroccoli #raredisease #genetics #genes #syndromes #book #blogger #send #sendblogger #mummyblogger #cdlslife #strongertogether #cdlsstrong #smallbutmighty #disability #health #parenting

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I wrote this on Facebook yesterday (18.11.21). Seeing as I’ve neglected the blog for far too long, thought I’d add it here too.

Bear with me, my people. Hope this makes sense.

Here’s The Floret, looking fabulous in her new Children In Need top that she’ll be wearing for school tomorrow.

I hope it doesn’t throw her too much by not being dressed in her uniform – that’s always a risk!

Over the years I’ve shed a few tears watching the programme, and it’s reminded me that we – at Broccoli HQ – despite our challenges, have been more fortunate than others.

Hannah’s helped to raise money and also indirectly benefitted from Children In Need. And I’m sure there are many children both in the UK and abroad who have too. Thank goodness for charities and the great British public that work hard (sometimes all year round) to raise the money!

However (there’s always a however, isn’t there?) I haven’t watched it for some time and won’t be watching it on Friday. And that’s not just because it’s on the BBC either.

For those of you who aren’t aware of the programme, it’s a night dedicated to raising fantastical amounts of money. Millions of people are glued to the TV and millions of pounds are raised.

It’s a melange of entertainment, where presenters, ‘celebs’, musicians etc contribute…and, amongst this, of course, it highlights snippets of the plights of children and their families in the face of adversity and those who have benefitted from the charity provided.

Cue the sad music. Deeply moving stories; stories that would make many people weep their hearts out, pick up the phone and donate as much as they can. Glamorous presenters in their expensive designer gear will appear solemn/teary for a minute, then introduce the next act. The mood quickly switches to jollity. Pyrotechnics light the stage up and everyone cheers when the donations are declared. Powerful stuff, that.

…and then, when the night is over, everyone will get on with their lives – absolved; satisfied that their contribution has probably made a difference to someone. I’m not knocking that. Families, just like ours, would be absolutely lost without charity.

But more could be done. Much, much more. That platform could help to raise so much more awareness. However, the format works, and people would probably switch off if there was too much of real life featured.

Some people would refer to this kind of fundraising as ‘pity porn’. I did a quick look on the internet about this and, ignoring all the *coughs* dubious sites that aren’t related to what I’m referring to, here are a few definitions:

Presents people in a wretched state, used to garner donations for causes.

Any theatric or cinematic style intended to overwhelm the viewer with a sense of pity or sympathy. An over the top version of pulling at one’s heart strings.

Allows people to escape responsibility for institutional, structural, social problems that are not going to go away.

I tend to agree with all of that, especially the latter.

I guess, by allowing our journey to be shared by others, some could accuse me of previously being implicated in this kind of activity. People seem to like to donate to children, especially the cute young ones. Teens, perhaps less so. However, I’ve always stressed (and I hope people have taken note) that I don’t ever wish my child to be pitied. That’s not why I’ve shared our journey over the years! I have no regrets with helping to fundraise for other charities.

So, what more could be done?

Well, for a start, I’d love that those few moments of pity on the night be transformed into a lifetime of empathy by the majority and (ideally) activism – to help bring about changes in society for the greater good – after all, our children or any one of us can become disabled at any time in our life…and in an instant.

I’d like huge swathes of the population AND our government to genuinely understand the true impact that disability has on people’s lives – the battle for services, the inaccessibility, the discrimination, the physical and emotional struggles, the stress and sleepless nights, the children unable to access education, the cruel financial hardships, families having to fundraise for medical treatment or much needed equipment for their children, single parents literally on their knees completely unsupported etc etc and etc.

…and then I’d like them to act upon it, I’d like a fairer, more accepting society. But I know that’s too much of a big ask. People with disabilities aren’t often valued or considered within society.

I’d really like the starers to stop staring. I’d like those that park unnecessarily in disabled parking spaces not to. I’d like suitable toilets and changing spaces. I’d like buildings to be accessible. I’d like people to stop tutting when they see a child having a meltdown. I’d like employers to be a little more empathetic with parent/carers. I’d like people with disabilities and their carers not to feel like they have to beg for services or financial support. I’d like everyone to know that families like mine may feel abandoned, isolated, unsupported, lonely.

I’d like everyone to know that one third of parent carers went without food and heating in the last 12 months. I’d like people to know that two thirds had to quit their jobs to care for their disabled children – losing over £21,000 from their family income. I’d like everyone to know that one in 10 parents who shielded even had to use a foodbank for the first time – source: Counting the costs – Contact for families with disabled children.

I’d like all of this to sink in and for the general public and policy makers to be more bothered.

…but of course, when it doesn’t affect you, then it’s not that interesting really, is it?

Accessing a charity can be life-changing, it has been for us. However, not everyone is lucky enough to be able to have access to a charity that meets their needs. Furthermore, that charity can’t be there 24/7, it may not be able to provide a service/services a child and their family needs, nor may it be there forever!

As much as it’s a nice thing to do, we can’t really be absolved by chucking a tenner in a pot once a year, can we?. We can all do better…if we really want to.

So watch the programme, enjoy the night, donate should you desire, but please remember that the families featured aren’t just ‘stories’.

We are the 24/7 365 REAL life, and, for the most part, invisible families.

#mykidlovesbroccoli #CdLS #corneliadelangesyndrome #corneliadelange #raredisease #awarenessmatters #SENDparenting #disability #specialneeds #charity #autism

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CdLS – Facts matter

Hello there! 

Apologies for the radio silence, I’ve been busy (mostly procrastinating really) and neglected the blog. My bad.  But I’ve popped on today to have a bit of a ramble and share something very important to me…and to lots of others, actually.  So if you’re remotely interested, please read on.

For many years now, I’ve endeavoured to raise awareness of CdLS (Cornelia de Lange Syndrome) and I think I’ve done pretty well on that front with families contacting me from all across the globe expressing relief that they’ve found that they’re not alone on this journey. 

However, with that awareness raising comes a HUGE responsibility to share THE facts, as families who have just started out on their journey will come across this information. 

Yes, I share shenanigans about my own poppet who happens to have CdLS and the ‘warts and all’ parenting challenges, however, I have at times sounded like a broken record whilst stating that everyone IS unique. No two people are the same – whether they have CdLS or not.

Facts about CdLS are facts and these are not to be skewed. However, sadly, my friends, I fear that has happened (the skewed stuff), been leached out into the mainstream and caused a whole lot of upset in the CdLS community worldwide…and that breaks my heart.  It really does!

I don’t like my Tribe being upset.

Unfortunately, there are a number of new parents that have come across this misinformation and this has caused no end of distress – they’ve had enough to contend with already.  Young people have been distraught when coming across information which led them to believe that they will lose all the skills they have achieved – their mobility, speech, cognitive ability etc. That they’ll develop seizures, even.  Parents have also been made to feel that they aren’t doing enough to fix their children, purely by accepting, and living with, a diagnosis.

The fact that this misinformation has had a severe and adverse effect on many people is deeply, deeply, concerning.

(I’ll elaborate another time on the ‘fixing’ bit, however, there is a plethora of therapeutics out there to help our children).

Attempts have been made to silence parents trying to rectify this misinformation and share the truth – they have been labelled as trolls, even threatened with physical violence.

That isn’t okay! Not one bit of that is okay.  If that had occurred on my page there would have been consequences. Without question!

Now whilst our CdLS community is scattered worldwide, I know, hands down, that the community are EXTREMELY supportive of each other. For me, there doesn’t appear to be cliques, like most groups have; It’s just one big extended family who, despite all our differences, ‘get’ what each are going through and will reach out, advise and support whenever they can. 

The question was/is, why are they not supporting one cause in particular who is sharing information about CdLS?

CdLS doesn’t get much attention, so you’d think everyone would be jumping up and down with excitement, wouldn’t you? I know I was…initially.

Are they jealous of the attention? Surely not?

We shouldn’t be fighting. Shouldn’t we all be embracing this cause?

I was late to the party on why the majority of the community worldwide were so up in arms.  I couldn’t fathom why they were so enraged.  I felt they were being incredibly unfair.  In fact, I’ll be honest, I was deeply disappointed, angry even.  Why weren’t they supportive of something so important to us all?…then, when I learned more, I realised why. 

I don’t wish to sound disrespectful however, unfortunately, I fear that the media and the general public have lost their critical thinking skills (and logic sometimes!) – in that, people don’t seem to see that not everything is always as it seems, and regardless of who says it.  In my former profession critical thinking was drummed into me.  I learned to gather information from a variety of sources (not just one), question it, analyse it, critique it, then come to a conclusion – one that was grounded in evidence and backed up by research. Because lives were at risk – literally!

And that’s also stood me in very good stead throughout the last 12 years with my girl. If I’d have taken every nurse, doctor or consultants word, we may’ve been in a right old pickle at times. We’ve been told all kinds of speculative nonsense over the years.  However, there comes a time when (even when you don’t want to accept stuff) the facts really do remain the facts.  And no amount of jumping up and down, fighting or ignoring other people, having a tantrum, screaming at people, or whatever, will ever fix the most important thing you want fixed.  Because that’s not how life works. Sometimes, as unpalatable or heartbreaking as it may be, we just have to accept that life isn’t how we assumed it would be….and then get on with living.

A diagnosis can be life changing for all the family. We may go through a process of grief for a life we once assumed we’d have. And grief can make us do funny things.  I’ll elaborate on this another time (and it’s definitely in The Book of Broccoli) but sometimes we don’t realise we’re in a cycle of grief.  Sometimes we don’t realise we’re stuck in it. Sometimes it’s cyclical and sometimes it’s triggered during certain times. Sometimes we’re stuck in constant fight mode; we don’t want this life and anyone who doesn’t share our thoughts or narrative is the enemy.  I’ve seen that in me in the past and I certainly see that in others! If we don’t work on this grief, it can be very destructive. When we’re told information about our children that we don’t want to hear, we can react in ways we’ve never reacted before – sometimes to the detriment of others and ourselves and despite the consequences.  We may try and trample over anyone who gets in our way. We may not care about the impact our words have on others. This also depends on our own personalities and mental health too and how we react to events. If we hurt, we may not care whether we hurt others.

…and our CdLS community has been hurt. Deeply. This saddens me no end. However, there is an immense amount of strength and unity in that community too, thankfully.

And it’s very easy to pick out bits from research papers and hone in on them – I know, I’ve done it! TOTALLY guilty on that part *throws hands up*…because I care about my girl…and I worry.  However, that has then led me to seek out an expert to help me understand the jargonese and how it could potentially affect my girl, not the whole of the CdLS community.  Because, like I’ve said a million times before, our magnificent CdLS poppets are all unique.  Like we all are.

I’ve had decades of using research in my own work, but even I struggle at times, because I’m not a world expert on CdLS…and I’ll never claim to be either. So this is a post to share some facts should anyone stumble across this blog, with some links, info and whatnot about what CdLS really is (and absolutely isn’t).

But just before I go, please know that (and I cannot stress this enough!) my girl has CdLS, however, that does not (and will not) stop her leading a life worth living.  Yes, adaptations will need to be made, but my child has done FAR more than many other adults will ever do already – we just have to view life from a different angle, adapt and get on with living.  She is not to be perceived as a tragic cause or something to be fixed.  She cannot be ‘fixed’, that’s impossible, however, if there was a ‘cure’ (which there can’t ever be for her) I’d jump at it if there was no risk of harm to her.  I’m not ashamed of saying that either. And I would love nothing more than to support and champion anyone who wishes to share the facts about CdLS.  Always have, always will!

…the caveat being that THE facts are shared!

My girl is her own unique self. She may be different, but definitely not less. She has been my greatest teacher. And whilst I make no bones that life with a disabled child can be challenging, it can also be beautiful and fulfilling.

I challenge ANYONE to prove me wrong on that one!

So, without further ado, here’s some handy links.

Until next time


p.s. I make no apologies for the amount of times I’ve written the word ‘fact’ in this post…because it’s all about the facts!


Myths about CdLS from the UK and Ireland Foundation: https://www.cdls.org.uk/myths-about-cdls.html

CdLS Foundation UK and Ireland

Courtesy of CdLS Mumma
Courtesy of CdLS Mumma
Via CdLS Mumma – facebook
Courtesy of CdLS Foundation USA


THIS is the document to look at.  Obviously individuals are gloriously unique (have I mentioned that?), however, this will give you a pretty good indication as to what CdLS is. 

Diagnosis and management of Cornelia de Lange Syndrome – First International consensus statement.  Written by THE world experts https://www.cdlsworld.org/xwiki/bin/view/cdlsPublications/consensus/


Research IS ongoing and here’s the proof. A quick Google search brings up the following documents conducted recently regarding Cornelia de Lange Syndrome (and there are plenty more to choose from!)

Research from 1953 to 2020 (YEAH, ALL THOSE YEARS! GO FIGURE!) – a biometric analysis: https://digitalcommons.unl.edu/libphilprac/4860/











If you’re looking for the facts about CdLS, these are the people to contact. If there is no Foundation in your country, please contact one of the others and I’m sure they’ll try and help you.

UK & Ireland: https://www.cdls.org.uk/

US: https://www.cdlsusa.org/what-is-cdls/

CdLS world: https://www.cdlsworld.org/xwiki/bin/view/Main/WebHome

CdLS Australasia: http://www.cdls.org.au/

CdLS Israel: https://www.cdlsisrael.org.il/

#cdls #corneliadelange #corneliadelangesyndrome #raredisease #awarenessmatters

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I’ve written a book!

I’ve written a book!

After my last blog post (bit glum, tbh) I thought I’d pop on here and just mention that I wrote a book.

…and I’m a bit proud.

Well, I’m very proud, actually. Hence this blog post.

So, there’s me – blabbing away for AGES (and undoubtedly boring everyone stiff!) at getting The Book of Broccoli done. Then…well…a global problem turned up.

I chipped away when I could, but I needed time to concentrate. And looking after The Floret 24/7 didn’t afford much of that. When I did have time, I didn’t have the energy. I just wanted to lie on the sofa and watch something mind numbing on the telly. 

So I kept chipping when time/Hannah permitted. And then I felt glum (much like many of us have done). The glumness came in little waves, so The Book of Broccoli was put aside until I could write without projecting that glumness onto a page.

I bought a pencil and borrowed Hannah’s ipad and started to doodle instead – thinking I could add a few into the book. It also stopped me getting even glummer and made me feel less guilty that I wasn’t doing anything on ‘THE Book’ – the one I’ve been promising for far too long.

Life does seem to have a habit of getting in the way though, doesn’t it?

So I doodled…and doodled…and did a bit more doodling. And I just couldn’t seem to stop.

I doodled so many doodles that…

I’VE GOT A BOOK PUBLISHED!!!!!!!!!!!!!!!!!!!!!!!

I’ll say that again, just for dramatic effect…





HAVE IT!!!!!!!!!!!!!! 

This one is called The (little) Book of Broccoli: doodles and stuff about our Rare Journey – purely because I couldn’t think of a better or more apt title.

Consider this an amuse-bouche – a little (hopefully pleasing) appetizer, until I actually get my act together and finish THE Book of Broccoli.

I’ve learned a lot during this process. So that’ll bode well for the future.

Of course, as is my character, I’ve had lots of doubts about this book being published – will people like it? Etc etc and etc. So I gave myself a good talking to and, now that the reviews are in, that anxiety has gone. I need to have more confidence in myself.

It’s important to add that this book is just about our life; no-one else’s. But it has resonated with many people…parents of children with CdLS but also other family members and parents of children with different challenges. Furthermore, I’ve been contacted by professionals who will be using this in their work – which is all FABULOUS!

Hannah’s taught me MANY things over the years. And one of those things is just to go for it – whatever it is; to be spontaneous, see how things pan out. So I’ve actually gone for it this time…and it’s out there RIGHT NOW for the world to read 😊

It’s highly unlikely I’ll win a Nobel Prize in Literature, or a Booker Prize, or even be listed in Richard and Judys best list, but not to worry. That wasn’t the point. I’ve learned accolades aren’t my bag. It’s more important to make a positive difference in someone elses life.

So, there you have it. I can now call myself an Author of a proper book. Ooo, get me! 

Mama Broccoli – not just a blogger or blatherer on social media…an author!


…and, as we say “Up North”, I’m proper chuffed!

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A Day of Reflection

Credit: Jose Antonio Gallego Vazquz, via Unsplash

12 months.

…and I’m sorry. 

So very sorry.

I’m sorry for the 125,000 plus deaths.

I’m sorry for the drift and delay. 

I’m sorry any of this isn’t deemed important enough for there to be a review now.

I’m sorry that people with a Learning Disability are dying at 6 times the rate of the general population:


I’m sorry for the blanket DNR’s put in place without people’s consent.

I’m sorry that the CQC were required to investigate.

…and I’m sorry that they only selected 7 CCG’s when there are 135 CCG’s. 

I’m sorry that they acknowledge that the “relatively low response rate affects our confidence in the findings and mean the results may not be generalisable”.

I’m sorry this clearly means there will be many more unnecessary deaths unaccounted for in these findings.

I’m sorry these precious souls were forgotten and discriminated against.  That their lives weren’t deemed worthy enough.  I’m sorry their Human Rights were breached.  I’m sorry they weren’t consulted.  I’m sorry their care givers weren’t consulted either.

I’m sorry people took it upon themselves to place the orders without following the Mental Capacity Act…and, in turn, breaching their Human Rights.

I’m sorry people carried those orders out.

I’m sorry they’ll have to live with those actions for the rest of their lives.

I’m sorry that I can’t help but fear for my child’s life when she becomes an adult.

I’m sorry people won’t speak out because they’re too scared they’ll lose their jobs.

I’m sorry that people simply don’t care enough.

I’m sorry that Professor Angus Dalgeish, Practising Oncologist, reported on 22nd March 2021 on GMTV the impact of an ineffectual lockdown:

That 400k had not had the necessary cancer tests.

That 40k have not started their treatment in time…that their cancer may now be incurable…that it will mean them dying early.

That 100k people should’ve had heart stents – vital for keeping them alive – and that deaths by dementia with ‘covid on the side’ have increased by a quarter.

That people are unable to access the mental health support they need.

I’m sorry for all the people with other conditions that aren’t getting the treatment they desperately need.


I’m sorry that people are suffering at home and in immense pain.

I’m sorry that people are desperately lonely still.

I feel so sorry for the older, vulnerable people who I see doing their shopping.  Clearly fearful.

I’m sorry that children and adults felt that they couldn’t go on anymore.  So, so sorry.

I’m sorry for all the people who were murdered…and the silence of the media.

I’m sorry that we have one of the lowest number of ICU beds in Europe:


I’m sorry that beds in general have more than halved in the last 30 years – the largest percentage being in mental illness and learning disability beds:


….whilst the population has continued to grow – in 1991 it was 57.34 million and as of 21.3.2021 it was 68,141,779.

I’m sorry people were denied that precious goodbye with their loved ones.

I’m sorry that world experts have been cancelled out, considered quacks. https://www.reuters.com/investigates/special-report/health-coronavirus-vaccines-skeptic/

I’m sorry that people who question the narrative are mis-labelled anti-vaxxers – a term that appears to have been weaponised and encouraged.  

I’m sorry I saw all those photographs of people face down in a Chinese street…allegedly dropping like flies…and how fearful people must have been.


I’m sorry I saw the photos of the huge nightingale hospitals and what further fear this must have driven into people.

I’m sorry I read the words “Authoritarianism” and “Orwellian” too many times to stomach.

I’m sorry for the people who do genuinely care and are just trying to do their job…and any negative impact that the last 12 months has had on them.

I’m sorry that people have lost their businesses, their jobs and their homes.

I’m sorry that some people remain without financial support.

I’m sorry for the people still trying to keep their businesses open.

I’m sorry for the people who were just starting out with their businesses and receive no support still.

I’m sorry that kids were deprived of contact with their friends.

I’m sorry that people were deprived of contact with their loved ones.

I’m sorry that people are still desperate for a hug.

I’m sorry for the people who were too frightened to go out…and the ones who were too frightened when they had no option but to stay in.

I’m sorry for the lack of education…and what that may mean for the future.

I’m sorry that SEND parents and their children were deprived of the support they desperately need.

I’m sorry people with disabilities are being deprived of the treatment and support they desperately need.

I’m sorry to see the vitriol spewed on social media.  I’m sorry that other people think it’s okay to sit behind a keyboard and wish someone dead…or scoff at someone who dares veer from or question the narrative. 

I’m sorry for the double-think and the double-speak.

I’m sorry for the fear that’s driven and for the sins of omission and commission.

I’m sorry that liberties have been (and will be) stripped…because fear makes us do funny things.

I’m sorry that they pretend they care about you.

I’m sorry people feel they have to protest.

I’m sorry that the NHS ‘reset’ campaign has to be part funded through a private company:


I’m sorry that the bones of our once beloved and free NHS have been picked and I worry about its future.

I’m sorry that I question why this was instigated at the time it was.

I’m sorry for the greed.  The blatant disregard.  The ignorance.  The million pound plus back-handers for friends.  The 6 figure Downing Street flat refurbishment.  The 2.6-million-pound refurbishments for press briefings. 

I’m sorry that they broke the law….and that there will probably be no recourse. https://www.bmj.com/content/372/bmj.n511

I’m sorry for ALL.  THE.  LIES.

I’m sorry that the MSM didn’t deem this as newsworthy as the other news – the ‘cases’, the deaths.

I’m sorry that I feel utter disgust.

I’m sorry for the foodbanks.

I’m sorry for the starving children.

I’m sorry that parents who’re trying to do their best are considered wasters.

I’m sorry that I question why other agendas are being driven at the same time as a global crisis…haven’t they got enough to think about?

I’m sorry that people think they’ll go back to ‘normal’, when they’ve already been told we won’t be going back to ‘normal’. https://www.independent.co.uk/news/uk/politics/boris-johnson-conservative-conference-coronavirus-building-back-better-b836324.html

I’m sorry that I can’t see peoples smiles anymore – shrouded by a piece of fabric.

I’m sorry that many people feel they have nothing to smile for.

…but I’m thankful that my precious girl hasn’t a clue what kind of world we’re living in.

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Stop the clocks

Credit: unsplash

Well Tiger, change is afoot and I feel the need to document it. 

Whilst we’re all prepared, I’ve got very mixed feelings right now – flitting from optimism to dread – as tomorrow I’m having to let go of you a little…again. I’m having to trust strangers to take care of you and keep you safe.  I’ll be honest kid; I’m not feeling great about that.  Leaving you there will be another punch to my heart.  But we’ll have to give it a go, give them the benefit of the doubt.  These new people have big boots to fill. 

But I’d like the clocks to stop. 

After (what feels like) 20 billion months stuck with me, day in and day out, it’s entirely possible that you’ll embrace what’s ahead.  Then again, I know you can find change quite difficult.  So we’ll just have to dive right in and see how it goes.  But we’ll manage.  We’ll find a solution if things get tough.  We always do. 

You know, when you were born, we never did get those first few months like I’d expected.  Those ones where you’re cocooned, getting to know each other.  Just us.  Finding our feet. 

Instead, visitors invaded what should’ve been a peaceful time, and there were appointments to attend.  Too many.  Watching the clock, constantly.  Going here and there.  It felt very much like a tick box exercise much of the time.  Looking back, I’m not sure whether you really benefitted from any of it.  But there you go.  It happened. 

I wanted to stop the clock even then.  I wanted that so badly.

But, of course, it didn’t and the weeks, then months, flew by. 

I resented that.  I felt like I’d missed out on simply just being your mummy.  The focus was on you…but then again, it wasn’t; as if your syndrome dominated everything and every waking hour. 

But after 11 years, and during a bizarre, perhaps harrowing and heart-breaking time for citizens of the world – for many different reasons – I got my time with you.    

(We won’t go into the mass hysteria over toilet rolls and hand sanitiser.  But it happened.  I know!  Crazy, huh? *rolls eyes*)

I’ll be honest Hannah, I’m relieved you’ve been oblivious to what’s gone on.  I’m thankful I didn’t have to explain any of it to you either.  Rather selfishly, I’m grateful of a breather from the phone calls, emails, reports, letters and appointments too.  However, I’m frustrated that you’ve been deprived of the support you desperately need…and the services you’re legally entitled to. 

All you’ve really known over the last few months is home.  I know that’s been confusing for you, but I hope you’ve had fun.  I have…even though I’m quite tired.  Okay, understatement…I’m exhausted;  24/7 parenting for almost 6 months really does take its toll.  But that’s not your fault. 

Sure, there’ve been ups and downs.  That’s life!  But you’ve been a star.  I’ve really enjoyed my time with you. 

I still would like the clocks to stop; for us to stay as we are.  However, that can’t happen.  So, hopefully, whilst you’re having fun at school, I’ll get some time to do something I’ve wanted to do for some time…to complete The Book Of Broccoli.  Huzzah!  So, as an aide memoir, here’s just a few of my favourite memories of my time with you this year…

Dressing up as Professor Broccoli to raise that much needed CdLS awareness. 

Our little strolls around the neighbourhood – you pointing at things and saying (what sounds very much like) “what’s that?”.    Or you pointing at the ceiling saying (what sounded like) “wash the hat up”.  I never did quite grasp that one! 

Going a bit bonkers whilst dancing in the kitchen to Mister Motivator by Idles or watching you spontaneously nod your head and shake your hand to some other tune with a strong beat. 

Paddling and picnics in the garden in the summer sunshine. 

Watching you trying to teach Jade the assistance dog how to count.  She’s not quite got it yet, but keep trying, she might. 

Our afternoon siestas.  Lovely!

Learning how to cut your hair…and actually doing it.  Now THAT was a challenge!

…and having Daddy Broccoli spend over 15 minutes trying to get the hairbrush out of my tangled hair, because you wanted to brush it.  I thought we might have needed to chop it out, it was pretty entangled.  You did a great job, kid!

Painting with you for your CdLS awareness exhibition…and getting really, really (really) messy.  I’ll never get the paint out of the furnishings.  Not to worry.  We’re not proud.  But one day, we’ll make sure that exhibition goes ahead. 

And whilst you thrive on routine and whilst we still needed to stick to most of that, I didn’t need to watch the clock.  We went at our own pace, all of the time. 

…and that was so refreshing!

I want to stop the clock. I don’t particularly want to let go again.

But I must. 

Change is afoot, my darling.  I hope you’ll be okay. 

So, go and enjoy this new adventure.  Make a friend, if you can.  Have fun, lots of.  Behave! Try and learn something too – listen, watch, concentrate if possible.  Go show them what you’re capable of.

Shine, you’re good at that. 

…and when the school day ends, I’ll be here, waiting for you.

#CdLS #corneliadelange #SEND #SENDparenting #family #corneliadelangesyndrome #syndrome #genetics #education #love #disability #raredisease

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I See YOU! – The 2020 update

I see you 2

Some years back now I wrote a post called “I see YOU”.  It turned out to be quite popular and seemed to resonate with other parents.

Since then, I’ve seen very similar posts shared across social media. And I’m okay with that, that’s good, because it supports the message intended – that us SEND parents aren’t invisible at all.

Also, wasn’t it Oscar Wilde who said that imitation is the sincerest form of flattery?

So, given the current global situation, I think it’s time for an ‘I see YOU’ relevant to what’s going on at the moment.

You ready?

Let’s go then…


It’s quite easy to feel invisible in our world.

I do, often.

There are also times when we may feel we go unheard. There are times we’re unable to do what we want or need to do…and that could be for days, or weeks, or months. There are times when we feel our children have been denied their liberties, deprived of things or of their freedom to just enjoy childhood…and that life really isn’t fair. There are uncertain times. Scary times. Some really, bone-crushingly, lonely times. Times when we wonder when, or if, things will change or ever get better.

(n.b. there are also some utterly glorious times too. Let’s not forget that!)

Many people across the globe, who don’t have a child with additional challenges, may have now had a tiny insight into some of our world. But as society opens back up, we – the SEND parents, parents of children with additional challenges – will continue to live much of that life, whilst many others resume a semblance of life before lockdown. Those experiences, those deprivations, may not be forgotten by the others, but as time goes on, they may pale into insignificance for many…but not all.

For those of you, like me, who’re continuing on this path, I want to let you know that I still see YOU.

I used to see you wondering how you’d ever get through the school holidays…and then I saw you worrying about how you’d get through lockdown or shielding. But you have…and you are…and you will, and for however long it takes. You know why? Because someone, so precious, someone you love, needs YOU.

I’ve felt your anxieties because your child has been stripped of their support and legal entitlements – whether it be medical/behavioural/educational/whatever and the detrimental impact that may have long term.

I see you agonising over all the hard work you’ve done to shield your child and felt your angst about the sudden ending of it.

I’ve felt your frustration (and maybe anger). SO much!

I see you making decisions best placed for your child, maybe refusing to bow to dictation. Conversely, I see those just starting out on their journeys, uncertain what to do for the best or maybe feeling pressurised by ignorant family or friends as to what they “should” do. They need to be empowered, supported in finding their own voice.

I’ve seen you trying so hard to maintain education and the work that’s been set. I’ve seen you at loggerheads with others, trying to quell the angst felt when the course work set becomes just too much to cope with.

I see your apprehension over the ‘declaration’ of the return to school for all children. I see your preoccupation, wondering what to do for the best. Conversely, I see those of you who’ve had no other choice but to send your child to school throughout all of this, because you’ve kept the country going. I’ve also seen you when you’ve needed to send your child into school because it’s the best for you…and perhaps them. There is no right or wrong in any of this. No-one ought to point a finger. We have to do what we feel is best.

I see you trying to support your child through the significant change of routine that was imposed on them…and preparing for the one perhaps yet to come.

I’ve seen you trying to have fun – making the 24/7’s seem less like groundhog day…and having to forego a clean and tidy home.

I see you every single day hoping your child doesn’t get sick…from anything.

My darling, I see it, I hear it, I feel it. Many of us do.

I see you thinking how you’d cope if one or all of you became ill, how that’d impact on your child, or wondering who (if anyone) would be willing to help.

I see you with that glorious baby bump; your sadness palpable at being alone during the appointments or scans. I see you leaving hospital and starting a new life…but in a world that feels as if even people you love could put your baby at risk.

I see you reading the perpetual stories about how it mostly affects the ‘vulnerable’…the ones with ‘co-morbidities’…and reading the hurtful comments. I see the impact that has on you. I feel it too!

I see you wanting them to wear the mask…because your baby can’t. I see your trepidation going out into the world again and wanting the strangers to do everything they possibly can…to help those that can’t. Stay away. Please stay away.

I see your good days and your not so good days – wondering when you’ll ever get a break.

I see your tears and frustration.

I feel your isolation even more than it was before.

I see you missing friends and family and deprived of the support you may’ve had.

I see you having to wait…and wait…and wait.

I see you longing for that hug.

Darling, I still see YOU. I’ve always seen you. And those of us who walk a similar path always will.

And if you ever begin to doubt yourself, remind yourself of the weeks and months that have passed and how you got through it…and how you helped get others through it too….and that you’ll continue to do so.

You’ve totally got this!

…and if you ever feel you haven’t, reach out, because one of us will catch you.

And we’ll remind you just how AWESOME you really are!  ❤

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Oink Oink



My girl

So, Plan A:

Take a short rest from the blog, free up some time, focus on The Book of Broccoli, get it done whilst ensuring I was 100% available for Hannah during her transition (I’ll get to that in a bit).

Fabulous, I thought.

There was no Plan B.  I didn’t need one.  2020 was going to be MY year.  Oh yes, I was pretty smug about that.

What actually happened:

Exhaustion, illness, quite a bit of procrastination, then Sh*tmageddon Friday (see Facebook for that little beauty) and…oh yes…declaration of a global pandemic!  Whereby pretty much ALL my waking hours are now spent keeping our Floret away from breathing people, safe, educated-ish (when she’ll tolerate it), entertained, happy and as healthy as possible.  Any spare time I do have leaves me loafing on the sofa, oozing with lacklustre, flicking through social media, consuming anything calorific and avidly watching Bob Ross’s ‘The Joy of Painting’.  We’ve missed a few episodes as, a few weeks ago, when flicking through the channels, our TV guide announced “The Joy Of Pain….” (given it doesn’t show up the whole of the title of a programme, because we’ve got an old telly) and we thought we’d give that one a miss!   Sounded a bit dodgy to be honest, even though it wasn’t after the watershed.  It isn’t dodgy at all. It’s good, clean family viewing. Just so you know.

So, I guess The Book will have to wait…yet again.  But it WILL get done.  It has to.

However, I feel the need to write something today.  So whilst the poppet is being entertained for a while, as long as her attention isn’t fleeting (e.g.  mins) then I’m good to go.

What’s spurred me onto write, then?  Well, the aforementioned transition.  Because Hannah leaves Primary School next week *gulps back big, globby, incredibly sad tears before the floodgates open* and I feel the need to mark this significant occasion with a proper blog post – which’ll probably come in handy as a bit of an aide-memoire for ‘The Book’ too.

But where to begin?

I guess at the beginning, really.  Let’s jump back a few years…

*PLOP* (postman shoves a half crumpled brown envelope through Broccoli HQ’s door, addressed to The Parent or Guardian of…i.e. me)

So I was already annoyed to start with, given someone couldn’t be bothered to use my name.  This happens a lot in the world of SEND and it’s not on.  People may claim it’s professional.  It’s not.  It’s just lazy.

The letter informed me that there’d been a meeting and Hannah had been allocated a school.  Well that’s nice, I thought.  How kind of those complete strangers to discuss my child (a child they’d never met) without my prior consent, then make a decision about her future, without consulting me first.

Actually, I didn’t think that at all.  If I recall, I went quite ballistic and swore a lot.  My child wasn’t going to THAT school.  I would decide where she was going!

So, long story short, I researched schools both in and out of borough.  I trawled through OFSTED reports until my eyes bled (slight exaggeration, but it felt like they could’ve).  I visited countless schools – mainstream and special – and unashamedly interrogated Head Teachers.  I consulted with my professional contacts.  Whatever school I chose, it was going to be the best one for my girl.

The last school on the list to visit was ‘that school’ – the one that’d been picked for her initially (the one I hadn’t been consulted about).  I wasn’t looking forward to it.  In my head, I’d already chosen the school for Hannah.  As is my wont when aggrieved, I walked through the doors with a stubborn and oppositional mindset.  However, after spending a considerable amount of time with the Exec Head, going round the school and eyeing up the staff to see if I’d investigated them in my former career (that wouldn’t have been good!), I’d shrugged off the stubbornness.

This was the place for Hannah.

She started in the nursery there.  I was informed she was entitled to school transport too…a bus…with a driver and an escort on board.  Letting her go on that was another tough decision to make – alongside the strangers in nursery, could I entrust other people to ensure she was okay? Would she be safe? How would she cope? Etc, etc and etc.

Turns out, she coped beautifully.  No separation anxiety on her part whatsoever.  Without a glance back, she may as well have flicked me the V’s as she departed on the bus the first day, leaving me waving on the pavement and feeling rather teary and angst ridden, wondering whether she’d come home in one piece.


Bye mummy!

She did return.  Obviously.

And oh, what fun she’s had since then!

Much of it has been documented on Facebook for posterity, so I won’t go on.

Sure, there’s been the occasional tiny blip. There always is.  Like the time when she almost chopped a finger off in a door – lessons were learned, no permanent damage done, thankfully.  But blips like that pale into insignificance at the love that she’s been shown and the support she’s had over the last few years.  And I cannot express how much that’s meant!

Most people I’ve come across who work in schools for children with additional challenges are truly special people.  Angels.  Dedicated, passionate, fun, creative, understanding…I could go on.  It’s not just about delivering lessons Monday to Friday, and that’s it.  It’s so much more.

Hannah’s been treated like a little individual in her own right.  Staff have endeavoured to ensure her needs have been best met.  They’ve tailored teaching to suit her.  Taken time to get to know her, how she ticks and what her triggers are.  They’ve taken an interest in her interests.  They’ve been creative.  They’ve listened and observed.  They’ve gone over and above.  They’ve taken her away on a couple of short trips…giving us a much-needed break.  They’ve worked tirelessly to coax her into the hydrotherapy pool…then celebrated when she did a length (more than likely being pulled along, but who cares, she did it!). They’ve stepped up when the utterly inept SaLT service failed Hannah….and listened patiently to me when I’ve had a rant about the utterly inept SaLT service.  They’ve washed hands and faces and fixed her hair for school photos so she didn’t look like a ragamuffin. They’ve kept her safe (*coughs* mostly.  See above).  They’ve given her a cuddle when she’s become upset…or a hug, just because she needed it when I wasn’t there.  They’ve taken time out of their day to come and watch Hannah in a Nativity.  They’ve greeted us in reception with a welcoming smile.  They’ve answered the phone and remembered who we are.  They’ve tended to her personal care.  They’ve watched out for ‘the poo face’ and acted promptly. They’ve not hesitated to get in touch when Hannah’s become tearful, because if tears come, they know something is seriously awry.  They’ve communicated with me and provided me with fly-on-the-wall accounts of her day.  She’s come home exhausted but content – always a sign of a good day.  They’ve shared their lunch with her, even though she’s eaten already.   They’ve nominated her for awards. They’ve plied her with broccoli…and ensured she had her daily flip-flop fix. They’ve celebrated Hannah’s achievements with us.  They’ve been a part of our Tribe for many years.

They’ve shown her love.  SO much love.

(That isn’t an exhaustive list, btw.  How could it be?)

…and I’m already grieving the loss of these people…for Hannah and for me.

So, without naming names (they’ll know exactly who they are)…I simply cannot thank them enough for what they’ve done for us.  They’ve truly made a difference.

(btw, these thanks also go to the drivers and escorts who’ve taken Hannah to and from school too!)

The people allocated to replace you will have very big boots to fill…and I’ll be surprised if they ever do!

Hannah hasn’t been in school since March.  Normally there’d be an opportunity to say goodbye properly, have that last cuddle, celebrate the years, have that little leavers disco (despite the fact that she’d probably spend the whole time not enjoying it because it’d be an overload of the senses.  But hey, inclusion and all that).  Unfortunately, a sodding pandemic and ‘Government’ (I use that word with derision) rules have put paid to that.  Maybe that’s a good thing for Hannah given I can’t explain to her that she’ll never be returning there.  But I feel she’s been completely deprived of the ‘ending’ we anticipated.  I too have been robbed of the opportunity to weep profusely whilst scratching pitifully at the glass of the classroom door, or cling onto the Exec Head’s leg whilst he drags me along, begging to be let back in for just another year.

Buddhist philosophy teaches us the concept of impermanence…that things change.  Nothing lasts forever.  But you know what? Whilst things do have to change, those memories Hannah’s beautiful teacher and the rest of the school staff helped to make and the unconditional and genuine love they showed to my girl will never be forgotten.  You can be rest assured of that!

I wish you all well for the future.  New children will come and go, I know.  But I hope, at some point when you’re least expecting, something will remind you and you’ll look back and recall that glorious, fun loving, blue eyed, tiny little broccoli girl – the one who caused havoc, the child who unwrapped all baby Jesus’s presents at the Nativity play, the child with the smile that could light up a room, the girl who energetically pushed a pram around with the speed of Usain Bolt – grazing everyone’s shins in the process – the child who embraced life like we all ought to – and I hope those memories make you smile.

I can’t say goodbye.  That would hurt too much.  The loss is simply too great.

So, instead, I shall repeat the sound that Hannah currently likes to make…the one that always makes her laugh…and just say…

Oink Oink.



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To be continued…




Hello you!


Long time, no see!

How you doing?


I’ve got a spare five minutes (it was a toss up – either talk to you or start tackling the ironing before I have to collect Hannah for an appointment…so, no contest really) so I thought I’d pop by, as I’m conscious that I haven’t written a blog post for quite some time.

My bad!

That’s because I’m trying (significant emphasis placed on the ‘trying’ bit) to write a book…The Book Of Broccoli – A book about our life since Hannah arrived.


The Book Of Broccoli

Credit: photofunia



And I SO didn’t appreciate how hard it would be!

But I’ve promised I’d do it…so I’m doing it.

However, life appears to be getting in the way of things at present (how rude!). So I’m doing bits and bobs when I have time/can focus/am not sleep deprived/and so on…and so forth.

…but it’s hard (did I mention that it’s hard?) and I feel like I’ve lost my voice a little and my direction…for lots of reasons.  I’ve made trillions of notes, typed thousands of words…even got a plan (which is unusual for me…I usually just wing it)…but still, I’m not feeling the lurvve right now.

Maybe I ought to just ditch the plan and keep on winging it. Who knows?

Ideally, I could do with a couple of weeks away (alone) from Broccoli HQ, solely to focus on my blatherings…erm…I mean riveting, informative and witty narration. But that’d be about as likely as Brexit getting sorted out (ooh, controversial!) or a unicorn knocking on the door and gifting me the winning numbers on the lottery.

Nevertheless, in true Special Mama style, I will persist and I shall get this book done.


So, dear friend, in the meantime; whilst I’m messing about procrastinating and whatnot, if you’re remotely interested in catching up with us, then please head over to our Facebook page (if you haven’t already done so) or, alternatively, feel free to have a look back at some of my previous ramblings.

…and I’ll try and pick up the blog as soon as I can.

Until next time (hopefully at some point soon-ish!)

Annie xoxo


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