Cal is leaving home – official

6 Nov

Cal has got his place in a supported living house in Grange Village! 40 mins from us, and once he’s settled he will be supported into employment.

He’s moving in with another ex Foxes student and another young person. He’s very laid back about it. Chris and I are a bit nonplussed. Our boy, moving out and into his own place. How often shall we see him? What stuff does he need? Who will do our cleaning now?

He’s also seen the consultant about his fit. He’s sent him off for scans but is fully expecting that this is a one off. 85% of fits never happen again, apparently.

So, this is Cal tonight. And this is our TKOE dog, demonstrating our mixed feelings.

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Jo xx

Calling all crafters – especially local ones

1 Nov

On December 5th there’s a TKOE craft table at a local craft event. Lisa Hardiman, who is running it, is very keen to have any crafts from any TKOE supporters. So here’s the details πŸ˜€πŸ˜€. Please help if you can.


Jo xx

Cal and his over anxious mother

14 Oct

Cal is on his five day assessment at Grange Village this week. He was sooooo excited about going there. Made us realise how bored he probably was at home, just like any 21 year old would be.

On Monday night though, I almost completely lost it …. Because he hadn’t been in contact with us. He is a prolific texter and we’d heard nothing since midday. I KNEW there is poor mobile signal there. I know he was having a good time. I don’t expect him to be in contact every day. And yet, I went into a state because of two things: I worried that he’d be miserable if he couldn’t contact us; and I was incensed because I can’t contact Rosie and now I couldn’t contact him.

And at no point did I stop and think – why don’t I ring him on the landline? Which is what Chris did the next day, to discover he’s having a fine old time and has no problem at all with having no phone signal.

What was that about, eh? Understandable, I suppose, but weird, nonetheless.

Those of you blog readers who get Cal’s meal updates – just prepare yourselves for a week’s worth when he comes home on Friday :) :)

Jo xx

Tom Kilburn

4 Oct

we went to Manchester Uni Open Day yesterday with Sylv. Very interesting, and very good. Even if the medical school had security guards wearing stab vests….

There’s a Kilburn building there, in the shape of a computer chip. Turns out old Tom Kilburn only went and got a Nobel Prize for the first computer. Hope he’s a relative. Chris was a little disappointed it was a homage to computer science. He’d been hoping it was brewing.

Cal’s got the go ahead for the next stage of Grange Village. He’s going for a five day assessment in the next couple of weeks. Scarily exciting.

And last but not least, next year’s London Marathon will have one Alice Hibberd Running for Rosie for TKOE. That’s a TKOE first and we are very grateful to Alice πŸ˜€πŸ˜€πŸ˜€.

short post today. The sun’s shining.

Jo xx

Four years – Part II

26 Sep

On a day very similar weather wise to today, four years ago, it was Rosie’s funeral. Remembering her, and remembering that day, with the tears and the laughter and the beauty and the love, I googled Rosie. Like you do. And discovered that she/her blog features in two academic books from the University of Aarhus.

One is about how people become entrepreneurs and get social value from the way they deal with terminal illnesses; the other is the development of keeping memories of people alive by continuing their blogs. What??? Shouldn’t our permission have been sought, or something? I suppose not. But this means that Kilburn (as she’s called) must feature in some student essays somewhere. How strange. And what an unexpected way of not forgetting her.

In further strangeness, this morning at the gym (yes, yes, unlikely I know but after ‘having a fall’ earlier in the year, I decided to take things in hand) I was asked the date. Which made me sad. And as I battled that one, for a few seconds, ‘You’re Amazing’ came on the playlist. Like she was there.


Jo xx

Rosie, Cal and Sylv – all legends

12 Sep

Let’s start with our latest teevee star on this special anniversary day. Hope you all saw The Special Needs Hotel or have it recorded or catch it on whatever the iPlayer equivalent is for Channel 5. And hope you enjoyed it. We love it – and the comments we’ve had so far have been incredible. Our favourite so far is ‘Calum is a legend’ (This narrowly beat the ‘is Callum a wearwolf?’ Because he is verrrrry hairy. And because of the spelling. And because Rosie was shouting in our heads ‘it’s Calum with one ‘l’!’)

We think he’s a legend too. Lambent Productions who made the programme are made up with him too because they rang to see how we all were and Cal chatted to them on the phone. Chatted!

And all of this has sort of helped us prepare for today, Rosie’s anniversary – death day? I don’t know what it’s called. Celebration day’s more like it I think.

Four years. Four very long, yet very short years. When she first died I hated every day that passed because it felt as though she’d been left on a shore and we were bobbing around in a boat which, day by day, got further away from her. Four years on, it feels more like we’ve set up camp a bit down the shore from her. Calmer, extraordinarily sad, but hopeful too because life does go on. And our incredible Cal and extraordinary Sylv are carving out their lives in ways that she would be so proud of, and we are too.

Today, we’re remembering her, with family, and cats and dogs, and trips to see universities, and baking and lovely messages from friends of hers and all the support of the amazing TKOE network which she set up. I don’t think we will ever be able to say how much you all have helped carry us through these last four years. Because remembering Rosie is so positive and life-affirming.

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Sylv may well kill me for putting up that picture again but I don’t care. I love it. And when I finally get round to using my special gadget to get old photos stored on the computer, I shall put up a picture of our three legends together, all three.

Have a lovely day everyone and comments, thoughts or photos you’ve got of Rosie would be very fine too.

Jo xx

One more sleep #TheSpecialNeedsHotel

9 Sep

Cal is so cool about this. Rosie would have loved it😍

Jo xx

Remember Thursday 10th Sept, Channel Five, 10.00pm #SpecialNeedsHotel

8 Sep

Dont forget , watch it, record it, catch it on the repeats, watch it online. Just be there.


And let us know what you think :) :)

Jo xx

Weddings, beaches and kindnesses

5 Sep

TKOE is pleased to shout out a BIG thank you to Liane and Mark Flattery, Chloe and Becky Gough and all their family and friends who raised a massive Β£130 for TKOE in memory of Rosie at their wedding. On the beach. In this country. In this summer. On the same day as our wedding anniversary, as it happened.

Thank you so much, all of you.

And thank you too for the photos – just had to put one picture on the blog because it is such a brilliant wedding photo with the full force of nature behind you.



Jo xx

Remember 10.00pm tonight Channel 5 The Special Needs Hotel

3 Sep

It’s tonight folks. Episode 1 of The Special Needs Hotel. Eeeeek. Excitinggggg.

Don’t forget now! And Cal’s in next week’s episode.

Jo xx


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