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 ..read more

Hello! 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 ..read more

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 ind ..read more

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.  Howe ..read more

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 ..read more

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: https://www.mencap.org.uk/press-release/eight-10-deaths-people-learning-disability-are-covid-related-inequality-soars I’m sorry for the blanket DNR’s put in place without people’s consent. I’m sorry that the CQC were required to inves ..read more

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.  A ..read more

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 in ..read more

  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 ..read more

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. Credit: photofunia And I SO didn’t appreciate how hard it would be! But I’ve promised I’d do it…so I’m doin ..read more