Red Ned & Harry Highpants

Over the last few months I’ve released one new title, and reprinted an old favourite.

Red Ned is illustrated by Heath McKenzie (Don’t Open This Book) and published by Lake Press. It asks the important question, what if you had bright red har, hated it, burnt it off by misapplyiing bleach, panicked, sought out a barber while wearing a bin on your head, and were mistaken for Ned Kelly.

A book about accepting who we are, and not wanting to be someone else. You can buy it here.

‘You are who you are, that’s the truth, such is life’

 

Harry Red NedThat’s my son Harry holding Red Ned.

On the subject of Harry’s, the title Harry Highpants is the one I get the most requests for over the years. For a while now, it’s been unavailable from its original publisher, Scholastic. Fior it’s 10th birthday, I decided to reprint it myself. It’s a story about freedom, protest, democracy, self expression, diversity, revolution, and PANTS!

In the words of one librarian – “We love Harry Highpants as a text for exploring persuasive writing.”

If you’d like to freshen up your library copy, or meet Harry Highpants for the first time, send me an email via the contact tab on this website. It’s $15 plus $7 postage for a signed copy within Australia. We can exchange address and account details, and you can be part of the movement for pants freedom.

Hartry highpants 10

Hickory Dickory Dash – NSS 2018

Reading Hickory with Watts Street Children's Centre in Box Hill, part of the ECMS centres.

Reading Hickory with Watts Street Children’s Centre in Box Hill, part of the ECMS centres.

It’s almost here! Less than a day to go and I’ve just got back from buying mouse ears at the $2 shop. I feel lucky, proud and excited that Hickory Dickory Dash was picked by ALIA as the National Simultaneous Storytime title for 2018. At last count, more than 980,000 people had registered at alia.org.au/nss

I’ll be reading at the Royal Children’s Hospital at 11am tomorrow, and thinking of people spread far and wide across Australia, and for the first time, New Zealand, all engaging with our book and connecting with the age old ritual of sitting down together to share a story. The RCH is a place I’m well acquainted with, as my seven year old son Jack has cerebral palsy, and is an outpatient with the Rehab team there. My read will go live on the RCH’s facebook page and on ALIA’s facebook page from 10.55am AEST.

laura wood swing

Illustrator and swing dancer Laura Wood is on the right

Hickory’s illustrator Laura Wood won’t be there, as she continues her nomadic swing-dancing tour of Europe. She really does swing dance! We’ve never actually met, having collaborated remotely on both Hickory Dickory Dash and The Cow Tripped Over the Moon. But we’re friends on facebook, and I love seeing her dancing photos.

It’s been an exciting buildup. I had a book dual with Dave Hughes, who’s book is also nominated for the Koala and YABBA Awards (vote for us kids!) chatted to Jules Schiller on ABC Adelaide, Rochelle Hunt in Melbourne, Sally Rippin and the Triple R Grapevine team on Sally’s monthly ‘Reading Room’, and even did a little spot on Channel 7’s, The Daily Edition, with focused on the back story to Hickory.

CSB Tony Wilson 001Laura and I are so fortunate to have back to back selection for this. Last year, we had 686,324 registrations at 6,129 different locations for The Cow Tripped Over the Moon. This year, the last number I heard was 980,000, with a few days to go. Help us get to one million kids reading, across two countries. You can register right up until the event starts at alia.org.au/nss

You can purchase a copy of Hickory Dickory Dash, The Cow Tripped Over the Moon, or Emo the Emu.

It’s all a lot of fun, and I feel honoured to be an ambassador for children’s literature on this important day. Thank you ALIA, thank you Scholastic.

And thank you to my family and especially our youngest, Alice. The book is dedicated to her. As she says herself, ‘that MY book’.

It's her book

Alice, 3: It’s her book

Here are some questions the team at GoYo Kids (kids books and yoga put together!) asked me for their facebook page:

1 – Tell us about your inspiration behind writing Hickory Dickory Dash

Hickory is a sequel, or as I sometimes like to call it, ‘a squeakuel’. I’d like to say I invented this joke, but must come clean and admit that it’s the geniuses over at the Chipmunks movie franchise who got there first. The first in the series was last year’s NSS title, The Cow Tripped Over the Moon, and when it went so well, I tried to think of another nursery rhyme I could backstory, and Laura could illustrate. Hickory was actually a natural fit, because I loved doing the time codes in Cow for the countdown to the big event, and Hickory Dickory Dock has a natural timecode built into the story. The nursery rhyme tells me the ending of the story, it has to climax with a mouse running up a clock. I just have to build up to that, and in the end I went for a mother mouse, looking for her two lost mouse children, while an eye patch wearing cat is out and about, making it a nervous room by room search. It’s Owl Babies (separation anxiety), meets Possum in the House (room by room tour), meets Tom and Jerry (cat and mouse hijinks) meets The Cow Tripped Over the Moon (nursery rhyme backstory).

2 – Why is storytelling important to you?

Stories are essential to humanity, at least as we’ve evolved so far. The formats and methods change, but since forever, and forevermore, someone will be sitting down with someone and saying … ‘you’re not going to believe this’. That’s my job as an author, to create stories that unfold in interesting or original ways and inspire people to ask … what happened next? It’s built into us as people, and so if it’s done well, it taps into an essential need. I’ve always been a reader, I love that format of storytelling, and so it’s a great privilege to write some books that people read. Something like NSS honours the reading ritual, the great literacy project that we as a society need to be fostering, and so being the face of this campaign has been an amazing thrill.

3 – How will you be joining in on Wednesday May 23?

I’ll be at the Royal  Children’s Hospital in Melbourne. Scholastic Australia have a book bunker there, and the live feed will be shown to kids in hospitals around the country. It’s a particularly special location for our family as my son jack, who has cerebral palsy, is an outpatient at the RCH.

Please tag your photos and videos #NSS2018. I would so love to see how National Simultaneous Storytime looks in your part of Australia or New Zealand.

Here is the awesome AUSLAN read of Hickory, that went out to all registered participants.

 

Here are some pictures from last year.

Olive Black series author Alex Lee, reading at Auburn Primary, Vic

Olive Black series author Alex Lee, reading at Auburn Primary, Vic

Parkes Shire Council

Parkes Shire Council

Trinity Catholic School, Murrumburrah

Trinity Catholic School, Murrumburrah

Springfield Library in Queensland

Springfield Library in Queensland

 

Cow’s Perfect Flight – Images from NSS 2017

She did it! We did it! What a day.

686,324 people registered to hear The Cow Tripped Over the Moon as the ALIA National Simultaneous Storytime title. It was read at 6,129 locations. That’s more than 150,000 than any previous NSS title.

I went to the Royal Children’s Hospital and read to patients there, as well as some local schools who came in for the morning. Here is the video of my read.

Many thanks to ALIA, Scholastic Australia, my editor Rebecca Young, Laura Wood of course, and my wife Tamsin and four kids. What a thrill it was. Unfortunately, Laura was in the UK and couldn’t be there to receive the glory she deserves. We have another title together at the end of the year, another nursery rhyme back story.

Here are some photos from the RCH, and around the country.

Brian Schmidt,

This is the winner of the 2011 Nobel Prize for Physics, ANU Vice Chancellor Brian Schmidt, READING MY BOOK!!! He says the astrophysics are sound.

EXT_0136_3000_saveforweb

Tony Wilson at the Ella Latham Auditorium, RCH, Melbourne. Credit: Alvin Aquino/RCH Creative Studio

anthony morris

Childcare specialist Anthony Morris – Moon attempt 1, North Fitzroy ,Melbourne

Brail read - Vision australia - Jamie Kelly Carmela Carey

Jamie Kelly and Carmela Carey, reading a Braille version for Vision Australia

tony and fam

Tony Wilson, with Polly, Alice, Tamsin, Jack and Harry.

Captains Starlight with Tony Wilson

Captains Starlight with Tony Wilson

Older students helping the littlies at Newington College

Older students helping the littlies at Newington College, NSW

Heather Wellard at ALIA

Heather Wellard at ALIA, Sydney, NSW

Springfield Library in Queensland

Springfield Library in Queensland

Ramsgate PS, NSW

Ramsgate PS, NSW

Parkes Shire Council

Parkes Shire Council – dressing up a storm, NSW

Trinity Catholic School, Murrumburrah

Trinity Catholic School, Murrumburrah

Olive Black series author Alex Lee, reading at Auburn Primary, Vic

Olive Black series author Alex Lee, reading at Auburn Primary, Vic

SBS newsreader Lee Lin Chin reads in Sydney

SBS newsreader Lee Lin Chin reads in Sydney

Shoalhaven Libraries. Great animated stuff!

Shoalhaven Libraries. Great animated stuff!

A whole country tripping over the moon

nss bannerOne of the great thrills of my writing career is ‘The Cow Tripped Over the Moon’ being selected for ALIA’s National Simultaneous Storytime for 2017. NSS is national bonding over a common book, and this year it is Laura Wood’s and my Cow!

ALIA estimates that more than half a million kids will register to moon jump with us on 24th May, 2017 at 11am. I’ll be reading the book at the Royal Children’s Hospital in Melbourne, home of a Scholastic Book Bunker, but also a place we visit regularly with my son, Jack, who has his cerebral palsy managed there. It’s going to be a special day, and all four of my kids will be coming along for the festivities.

Any location that contains kids can register for NSS, and you do so at ALIA’s site. Hoping to break through that half a million barrier!

There are activities and paraphernalia  to be had at the ALIA website. Cow finger puppets, activity inspirations, graphics, teachers notes, and a little video of me promoting the event. Eddie Perfect is involved too, courtesy of Story Box Library. Visit the site! There will be digital presentations of the book emailed to participants on Monday 22nd May, so have your cloven hooves strapped on before then.

I’ll be participating in a Twitter chat, as @byTonyWilson, hosted by @picturebookbc at 8-9pm AEST on Thursday 4th May, talking NSS and picture books generally.

The Cow Tripped Over the Moon is now available in both hardback and paperback.

auburn north ps 11043172_10153735601377166_1671323630930061352_oThere is a short video of me reading Cow to Jack in the books page of this website.

Jack and the Boss

Wrote this as a facebook post a couple of days after the gig. It was replublished on news.com.au, and Jack and I even did a little ‘good news’ spot on Channel 10’s The Project. Jack has cerebral palsy and cortical vision impairment.

This is perhaps my favourite ever photo of Jack.

Photo: Sonia Denisenko

Photo: Sonia Denisenko

We were so unsure whether to take him to see Springsteen in Melbourne this week.

On the one hand, he is seriously obsessed. He watches “Bwuce” all day on YouTube. No greatest hits fan is Jack. He requests specific gigs, tracks, guest artists (‘Bwian from Gaslight Anthem with Bwuce!’). He knows all the E-Street Band by name.

On the other hand, lack of vision and sensory processing issues mean he can’t cope with loud music. He’s made screaming exits from the school fete and dozens of other PA scenarios. He even hates rain if it’s too loud on the roof.

So we thought he was no chance to cope. My prediction was two minutes max. My wife Tamsin convinced me we had to at least give him a shot.

All day he said he didn’t want to go. “Maybe I’ll see Bwuce later,” he said over and over. Then he’d cry, begging not to go. “I want to see Bwuce another time! Not today!”

We set up the plans for our inevitable failure. My brother Ned offered to wait outside AAMI Park.

Jack flinched at the first blast of noise as we exited the train.

“Is that Bwuce?”

“No that’s Jet,” I said.

“Is there clapping at Jet?”

“Yes there will be clapping at Jet.”

“Will Bwuce be on soon?”

“Yes, after Jet.”

“And Steven Van Zandt?”

“Yes, he’ll be on guitar.”

“And Patti?”

“Yes, she’ll be there too.”

“Bwuce’s wife, Patti?”

“Yes, she’s Bruce’s wife.”

“And Nils?”

And so we namechecked the whole E-Street Band as we crossed the railway yards.

It got louder and louder, but he seemed to be coping.

Then a nervous moment. Security told me I couldn’t take in a backpack.

I explained Jack’s cerebral palsy. “Without this I reckon he’s no chance,” I said.

“Fair enough,” said the most sensible security officer on earth, and ushered us through.

We found our way to the back of the ground section, using lifts and ramps that toured us halfway around the stadium.

IMG_9284

We found our spots. Plenty of room. Not too loud at all. The calm before the storm.

“Will Bwuce play American Land?” Jack said, which is Bruce’s thumping Pogues-ish ode to American immigration. Jack’s favourite.

“Maybe,” I said

“Will he play Badlands?”

“Definitely.”

Then it started. The “Melboooourne”, the clapping, the drums, the music. American Land it was.

Jack did the shrieking he does for the YouTube songs. His happy cheers. He called Bruce’s name. He called Steven van Zant’s name. He jiggled, he rocked, he had a ball.

For 12 songs.

One hour and ten minutes.

Then he broke. Youngstown broke him, and he asked to go home.

Ever since he has watched this video. Over and over and over.

His first words when he woke up the day after:

“I’m a Bwuce Springsteen fan. I’m a Bwuce Springsteen goer.”

 

Jack and I received lovely notes from all over the world. One of the nicest was from Natalie Sarny, who is following the Springsteen Summer ’17 tour right around the country. She took a photo of Steven van Zandt looking at Jack’s video.

van zandtThe book dedicated to Jack and his perseverance is ‘The Cow Tripped Over the Moon’. It is a CBCA Honour Book, and the National Simultaneous Storytime title for 2017. (May 24th, 11am)

This is Jack and my appearance on Channel 10s ‘The Project’

Cow Soars to CBCA Honour

cbca stickers

After seven horrible attempts on the moon, Cow finally nailed it and has soared higher than we ever imagined possible. Catapulted by Laura Wood’s gorgeous, funny illustrations, we’ve won equal second prize (Honour Book) in the Early Childhood category of the 2016  CBCA Book of the Year awards.

Congrats to Anna Walker and ‘Mr Huff’ who won the Book of the Year in our category.

Cow is my eighth picture book, and Cow herself had eight attempts on the moon, and it all seems quite poetically symmetrical, so much so that I have to sometimes remind myself that I’m not a Cow and can’t really jump very high any more, thanks to arthritic ankles from playing too much footy.

I’ve dedicated Cow to my third child, Jack, 5, who has cerebral palsy, and whose persistence and perseverance far outreaches Cow’s. He’s been ecstatic and says, ‘did we win? did our book win?’ I’ve said yes, and haven’t complicated the story with details about actually coming second. Who knows, maybe a rhinoceros cleared the moon three hours before the Cow? Who’s got a head for this sort of detail? We won something, that’s what’s being conveyed here.

There’s been further good news regarding the title. The Patch Theatre Company will produce a show in 2017 called ‘Yo Diddle Diddle’, which will be hip hop infused physical theatre show, using my rhythm and rhyme. It has a three week season in Adelaide, then a rural South Australian tour, and then a national tour. Arts promoters can book Yo Diddle Diddle here.

patchBecause Cow was on the CBCA shortlist, I’ve received some wonderful little gifts over the last couple of weeks. These have included a school bound new illustrated version made by Grade 1s, magic clay cows, teachers who have sung jazz versions of Cow, students who have sung nursery versions, new sketches of Cow, librarians who have dressed up … it’s all been quite wonderful.

Here are some of the highlights:

This is Leilani, from Avoca Beach PS, used with permission.

The Cow Tripped Over the Moon – read by Leilani from Avoca Beach Public School on Vimeo.

Thank you, Joseph, Grade 3, Camberwell Grammar, you little genius.

joseph cgs fartedyear 4

IMG_0307Magic clay

Auburn North PS, ‘Supercow!’

auburn north psTeacher Holly Bidwell posted her book week dress up effort to Twitter.

cow teacher Holly BidwellI did four sessions at the Melbourne Writers Festival this year. This one with Chrissy Perry (Penelope Perfect)

melb writers festivalUniversity lecturer Kylie Meyer has made a great teachers resource that you can check out here.

kylie m reading resource

I’ve completed and Laura is working on another nursery rhyme backstory, Hickory Dickory … , which will be published by Scholastic in 2017 or 2018.

You can purchase Cow here.

New book: Emo the Emu

emo-the-emuOn the wild grassy plains west of Old Humpty Doo

Lived the moodiest, mopeyest, saddest emu,

Just why he was sad well he didn’t quite know,

But he was, so the other birds called him ‘Emo’

My newest picture book is Emo the Emu (Nov 2015), published by Scholastic and illustrated by the supremely talented Lucia Masciullo, an Italian illustrator who has turned her eye to her adopted homeland for this project.

I thought of the idea for Emo when I was on tour with Alison Lester, almost as her warm up guy, doing speaking jobs to big groups of school kids on the north coast of New South Wales. I always loved Alison’s Are We There Yet, as well as Mem Fox’s Possum Magic, and I thought we were overdue a funny, rhyming ballad of a book that visits every State of Australia.

Emo complains about everything in the first part of the book.:

I hate eating weeds he would say to his father,

I hate eating seeds, grasses, mango and guava

I hate the green tree frogs, the frilly necked lizards,

I hate a wild dog from its nose to its gizzards …

I hate living here at the top of Australia,

I’m Emo the Emu, the world’s biggest failure!

emo complains

But then he meets Katie the Kangaroo who suggests that he couldn’t possibly hate Australia, and asks whether he’s actually seen it.

So they embark upon a trip.

Syndey harbour

They journeyed to Sydney that city of lights,

That city that hums through the days and the nights

They sailed Sydney Harbour and boarded the ferry,

And Katy said, ‘Matey’ how extraordinary!’

Emo the Emu was hard to impress,

‘I s’pose it’s alright, yeah, it’s okay, I guess.’

Kids can guess which State will get which famous tourist landmark.

Will Emo cheer up?

Will they make it all the way around this great continent?

Will I win some sort of international poetry prize for rhyming ‘Angurugu’ with ‘kangaroo who’?

Emo the Emu is dedicated to my best friend, Chris Daffey, who died in December, 2013. Forever missed.

dedication

Emo began life as a poem, that was read at Airey’s Inlet Literary Festival. It is on my speeches site,

The Pontipines Go to War

'Hey, stop saying my show is shit!'

‘Hey, stop saying my show is shit!’

In The Night Garden is back on in our house. Our new baby, Alice, 7mths, seems as weirdly spellbound as all our other kids have been. Today was a ninky nonk day, in case you’re wondering.

I always liked this post. Couldn’t get it published. F*cking publishing.

February 2013

“In The Night Garden and the Time Something Actually Looked Like Happening”

I once saw an arthouse film called The Circle. It was an Iranian film that was loved by quite a lot of my friends, because it said something about the status of women in the Muslim world. My main memory is that it said it very slowly. There was one scene on a bus that lasted the entire ten minute ride, shot in real time, without any dialogue or action from the characters, save some earnest blinking. Admittedly, there was also background rain.

In The Night Garden, whilst being a less overtly political work than The Circle is similarly committed to allowing a scene ‘time to breathe’. Parents out there know what I mean. The Tombliboos see their pants on the clothesline. The narrator will say ‘The Tombliboos have seen their pants on the clothesline’. The Tombliboos will squeak at their pants on the clothesline. The narrator will say ‘Look at that Tombiboos, your pants are on the clothesline?’ The Tomblboos will do nothing about the fact their pants are on the clothesline. The narrator will say, ‘Oh dear, Tombliboos, how did your pants get on the clothesline.’ The Tombliboos will clap their hands on their knees and point at their pants. The narrator will say ‘It’s lucky the Tombliboos have more pants, their pants are on the clothesline.’

Tombliboos and their pants

The pants are not a plot point, nor is the clothesline. Nor are the Tombliboos. After ten or so minutes of pointing and clapping for pants on the clothesline, we’ll move on to Upsy Daisy attempting to wake up a ball.

It’s excruciating, but if you sit down and take some deep breaths, and make yourself go sort of cross eyed and clear the section of your mind that is your inner one year old — you can actually see God.

Anyway, imagine my surprise when I’m watching the Pontipines (squeaking peg dolls who wear red coats and number off frantically at the slightest provocation) wait for the Wottingers, (squeaking peg dolls who wear blue coats and don’t get as much screen time as the Pontipines) for a peg doll picnic, and there’s some actual fucking conflict! The Pontipines wait and wait, and squeak and squeak, and I’m folding socks screaming at Mr and Mrs Pontipine to do something. Meanwhile the Wottingers are lost, so they’re squeaking too. I don’t get too excited, because I’ve seen these possible moments of dramatic action before, only to end up disappointed. The most likely development is that both parties will squeak madly and peg doll hop for a third of an episode, and then it will all be resolved with a hard cut to a fat singing parrot.

The Pontipine red coats

The Wottingers, in Napoleonic blue

But suddenly, gloriously, the Pontipines get jack of waiting for the Wottingers and just eat the picnic. They squeak it down, every last crumb. I’m absolutely flabbergasted. I tell my one year old what he is witnessing. ‘This is a dramatic arc, Jack’ I say. ‘The Pontipines, in their red coats, have ruptured the fragile alliance with the Wottingers in their military blue. This could get interesting.’

And it does get interesting (sort of). The Wottingers arrive on a rock above the picnic site, and look down on the Pontipines and the picnic that is no more. ‘Oh dear,’ the narrator moans. ‘There is no food left for the Wottingers. What will the Wottingers do?’

For the first time in the history of the Night Garden, I’m wondering too. ‘Don’t fucking stand for it, Wottingers,’ I say into the washing pile. ‘They invited you on a picnic, and then they stiffed you.’ But I can also see the Pontipine point of view. The Wottingers have taken an eternity, and you can’t just put a picnic on hold forever. Jack and I sit forward in our seats. It could be on here.

And then we get resolution.

Narrator: ‘Isn’t that funny! It seems the Wottingers have forgotten the Pontipines asked them on a picnic.’

Forgotten? It’s not possible. You can’t do this to me In The Night Garden writers! I can only get by gambling on whether it will be Ninky Nonk or a Pinky Ponk for so long. I needed this fight. I needed this fucking war!

Narrator: ‘Look, the Wottingers and Pontipines are playing together! Isn’t that a pip.’

Save me Titifers. Save me Haahoos.

Then the merry go-round starts, and the fairground goodnight theme kicks in and somebody isn’t in bed, and it’s Iggle Piggle who isn’t in bed, and we all take a deep breath because we know this bit, and know that it ends with it being it being ‘time to go’ – and some of us, unlike Iggle Piggle, are usually ready.

haahoos

How Now Win Cow!

This is me reading ‘The Cow Tripped Over the Moon’ (ill Laura Wood) to my son Jack. Jack, 4, as I mentioned in an earlier post, has cerebral palsy and helped inspire my story of bovine perseverance. The book is dedicated to him.

Scholastic sent me six hardback copies of ‘The Cow Tripped Over the Moon’ to give away. I’m doing it as a ‘shoot & share’ competition. Video yourselves reading Cow, upload it to social media, say ‘moooooooon’ at some point, and win.

Here are the rules:

(1) film yourselves read one or more pages of The Cow Tripped Over the Moon. At some point ‘moon’ must be said in Cow, which incidentally is ‘moooooooon’.

(2) Like my Tony Wilson facebook page (nb – this is my ‘author’ page, not my personal page) OR follow @bytonywilson on Instagram

(3) Upload to youtube and paste link on my facebook page.  OR Upload video directly to my author facebook page OR upload to Instagram tagging @byTonyWilson and using hashtag #cowtrippedoverthemoon (nb Don’t upload directly to my personal facebook page – it will be hard for me to keep track)

(4) Share the video on your own facebook or instagram.

(5) I’ll give six signed hardbacks away to the six best entries, as judged by me and my eight year old Polly. Polly is on the panel so I can deflect blame to her. If you do miss out on the top 6, we will send you another free signed book, Stuff Happens: Jack, up to and including the 20th entry.

(6) If you would prefer to have Stuff Happens: Jack, because you already have Cow, tell me under the video.

(6) Entries close 8.00pm Melbourne time Tuesday 20th October, 2015.

(7) If you are a winner, send me your postal address via email.

PS. If you like Cow, I have another rhyming book coming out in November. Emo the Emu (Scholastic), illustrated by Lucia Masciullo. It’s about a grumpy emu’s cheer up trip around every state of Australia.

Cow comp

 

World Cerebral Palsy Day – October 7th

jack qld

Today is world Cerebral Palsy day. It’s a day that raises awareness for CP. The stats say that 1.5 to 4 live births per 1000 will produce cerebral palsy, and the symptoms can vary from the very slight to the very severe.

it’s a brain injury – not a disease. Like a car accident or a bolt of lightning, it could have struck any of us. At some time immediately before, during, or shortly after the birth of the child in question, an oxygen deprivation incident occurs. The most popularlarly understood type of incident is cord around the neck, but in the case of Jack, who was born by Ceasarian this clearly wasn’t the case. Placental malfunction, viruses, bacterial infections – these are all possible causes. The truth is that many of us with CP children don’t know how it happeend, and Tamsin and I fall into that category.

The first cells to be affected in the event of an oxygen crisis are what doctors call the ‘white matter’. Jack’s actual condition is under the umbrella of cerebral palsy, but is called Periventricular leukomalacia (PVL), and the Ancient Greek students amongst you will be jumping up and down as you identify the Greek root for white (‘leuko’). The white cells control movement, and muscle spasticity and lack of control are the most common manifestations. Limbs can either be ‘high tone’ – rigid and stiff, or ‘low tone’ – floppy and weak, or a combination of both. Jack is high tone in his legs, and low tone in his torso. The longer the oxygen deprivation incident, the more severe the damage and, usually, the more severe the condition. Other basic functions can be affected too. Some CP kids get seizures. Some, like Jack, have coritcal vision impairment.

Jack amazes us every day with his bravery and resilience. He finds enjoyment in eveyrthing from Uptown Funk (which he knows word perfectly), to extreme trampoline sports with two siblings to an enduring love of pancakes.

Everything is changed by cerebral palsy. It is an absolute monster. But the lives lived with CP are vital and valuable, and Jack is our family treasure.

Jack's brother Harry had a Superman party for 6th birthday. We skimped on the entertainer.

Jack’s brother Harry had a Superman party for 6th birthday. We skimped on the entertainer.