Tuesday, 30 August 2016


My daughter’s no-nonsense teacher asked her special needs sixth-formers to get ‘age appropriate bags’ over the summer holidays. Now, after five weeks of my two children at home, I’m the one with ‘age appropriate bags’ under my eyes, but I know what she meant. Mrs D felt that it might make my daughter and fellow pupils in her satellite class at mainstream school feel more grown up and more like the other students if they weren’t carrying round Minions packed lunch boxes and Hello Kitty satchels. Saying this, I vaguely remember wearing a Thomas The Tank Engine cardigan when I was a sixth-former, but I was a shocking attention seeker...

So today we went shopping, and my girl found this one. A pale pink faux-leather handbag big enough to fit her packed lunch box/school diary/pencil case/rain mac/purse/phone into. All the essentials.

She was utterly delighted with it. I swear that she was more thrilled with her cheap and cheerful shoulder bag than a reality star from The Only Way Is Essex would be with the latest Louis Vuitton.* (*Please note, I couldn’t name anyone from that show, and I had to Google ‘popular designer handbag brands’ to make that comment. I can tell you the name of the drummer in The Pogues, though, so I do know about important stuff).

We followed up our shopping expedition with a scheduled appointment with my daughter’s neuro-psychiatrist, where The Prof was duly amazed at her animated chit chat (my girl is normally a little shy with him). I explained that I didn’t think it was a sudden re-occurence of the extreme highs (part of her mild bi-polar type mood disorder that he has helped keep under control brilliantly over the past couple of years). “She’s just on a handbag high,” I explained. “Ah, my wife has those,” he nodded.

As if her day couldn’t get any better, I then took my glowing girl to Pizza Express for lunch, where a concerned waitress warned that my daughter’s order of Leggera (Light) Pollo Arrabbiata might be ‘too spicy for her’. My peri-peri, chilli, tabasco, reggae-reggae sauce-loving girl threw the woman some proper shade and pronounced: “That’s the POINT.”

But she hadn’t finished making me smile. I asked her if she wanted to go to the toilet before we left. She looked at me, earnestly, and answered in a flash: “Yes. I don’t want to wee in the street like a dog.”

Song is Shane MacGowan And The Popes - I'll Be Your Handbag. It's inappropriate and sweary. But that's the POINT.

Wednesday, 17 August 2016


My girl is out of hospital and home. 

Over the last couple of days she's been unplugged from the various blinking, beeping, and puffing machines.

Last week’s terrifying talk of intensive care seems an awful long time ago.

I knew she was getting better when she dropped a baked bean from her dinner onto the ward floor, and was concerned that she was “minus one bean”.

Yesterday and today was mainly concerned with answering questions, over and over again.

“When am I going home?”
later amended to 
“What time am I going home?
changed to
“Will you cancel my dinner because I’ll be going?”
panic-changed to
“But what if I’m still here and I’ve got no dinner?”

The nurses were primed to provide the right answers. Food arrived shortly before we got the all clear to go, and in true Magnus Magnusson fashion (I’ve started, so I’ll finish), my daughter sat and polished off her meal while we waited, clutching her bag of medicine and discharge letter, watching her. Smiling. 

My girl is out of hospital and home.

Video is Charles Bradley - Good To Be Back Home

Sunday, 14 August 2016


I have been informed by my daughter that her dad is better at shaking the water out of her oxygen tube than me. And that he makes a nicer hot chocolate. And he 'sleeps better'.

He replaced me - rather too effectively for my liking - last night.

I got some proper, luscious, soul-restoring sleep in my own proper, luscious, soul-restoring bed (and I might even have gone out beforehand, watched a band, and had a drink or two, or three. You might think that, but I couldn't possibly comment).

I returned to hospital to find my girl another few steps on the road to recovery from pneumonia.

She's on 21% oxygen now (essentially air, but still needed to help her airflow). Earlier she tucked into a Sunday dinner and om-nom-nommed. I restored my Mum Is Occasionally Better Than Dad status by bringing her two things she's not had before: 1) A little snack tub of Wasabi peas and 2) some no-sugar Capri Suns. The latter items were received with actual awe - it's the first time I've ever seen a no-sugar version of what she wistfully calls the 'pouchy drinks with too many calories', so I snapped up a few multi-packs from the supermarket shelf. My girl held one with Holy Grail-style reverence and examined the packet, wide-eyed. "They're only 10 calories, Mum, only 10!".

I was convinced this would be the highlight of the day, but I was proved wrong. The topper of the toppermost moments was when two of my nieces came to visit their cousin on the ward. My girl was thrilled, especially when a nurse asked if they were her sisters. She was tickled pink with this - and that's the thing, that's the brilliant, brilliant thing: she is pink now, not the horrible, pale, grey colour she was a few days ago.

Life is starting to look more normal.

Saturday, 13 August 2016


Oh, oh, oh, what a difference a day makes.

She's turned the corner. My daughter's infection has started to shift. Air is getting into that left lung. Oxygen has been reduced from nearly 60% to 28%.

She's perkier, more anxious, and more nosey about her ward neighbours.

My lovely husband is at the hospital and has sent me home. He is dealing with the return of her repetitive questioning (which I was thrilled to see come back, but probably wouldn't have been after six or seven more hours of it).

I'm bloody well going out. Yes, 'out' out. I'm on the train to that London to see a couple of friends perform in their band The Disappointment Choir. I am not disappointed about this.

I am going to have a MASSIVE gin, meet some long-time-no-see mates, catch the train home (setting phone and watch alarms so I don't sleep past my stop), and then get approximately 10 hours kip.

Today has, and will continue to be, a very good day.

Video is The Disappointment Choir - Heartstrings/2½ Minute Love Song

Friday, 12 August 2016


My girl's struggle with pneumonia continues slowly. My struggle to present my best bright and breezy game-face to her also continues apace.

Yesterday there was talk of ITU and intubation. There's been less talk of it today, and my heart rate has gone down accordingly.

Antiobiotics have been switched. The ward has echoed to the sound of a succession of sinewy female physios drumming out a rhythm on my daughter's side and back with resounding cupped hand pats and manipulations. My girl has been blowing through a straw to make bubbles in a jug of soapy water. Her observations are being taken frequently and assessed carefully.

Despite the stubborn infection not wanting to shift, she's been more like herself  today. Typical trademark random conversations have occurred, when she previously wasn't saying much at all. The one that amused the nurses the most was a sudden worry on my daughter's part that Michael Jackson's doctor might be charge of measuring out her medicine (what the actual fuck?). Also, out of the blue, she told one doctor that "the matron was horrible to children and beat them". He seemed somewhat relieved to hear my quick explanation that my girl was talking about a character in Hetty Feather, a Jacqueline Wilson novel about a Victorian foundling hospital which I'd been reading to her at her bedside. Not referring the sister in charge of Ward 5 at Milton Keynes Hospital, who seems very nice.

Friends have helped keep little brother entertained with playmates. My husband has helped with shuttle runs, provisions, and general superhuman steadfastyness. Yes, that is now a word, I just wrote it.

Steadfastyman* and I are doing a tag-team switcheroo tomorrow. (*Autocorrect turned this into Steadfarty man and I was tempted to leave it, as it's actually very accurate). I need my bed for a night. I need the next couple of days to continue the tiny upward curve they've taken today. And I definitely need them be curvier, and more upward.

Wednesday, 10 August 2016


Pneumonia. Her left lung was very hazy on the X-ray and there's essentially a lot of gunk stuck there that needs to shift.

My daughter is on oxygen through a nasal tube. She's still not getting enough air into her gunky lung by herself. Her shape from her scoliosis, her poor muscle tone from her Prader-Willi Syndrome, and her daintiest of dainty and infrequent coughs being too damn dainty and infrequent, are all complicating matters.

We're waiting for the strong antiobiotics to kick in. In 24 hours, if hands-on physio, breathing physio, and the meds don't shift the gunk, a decision may have to be made to do a chest drain.

"I feel grotty, Mum," my dark circle-eyed girl told me. "I just want to get better."

In that brain-bamboozling way she has of random conversation shifts, she then said: "When you went to get our things earlier you missed a lion." I looked at her in alarm, thinking she had suddenly started hallucinating. "I think Daddy would have said if there had been a lion on the hospital ward, sweetheart," I said, patronisingly. "There was a lion," she insisted, and of course I found out later she was right. A person in a furry suit kind of lion. One of those 'supposed to be charming but actually quite creepy' type of things you see visiting children's hospital wards. Like clowns. Or One Direction. (I'm not going to even mention Jimmy Savile).

Another sofa-bed vigil is about to start. I think there may be less vigil-ing in my vigilance tonight because I'm cream-crackered. Not as cream-crackered as my pale and poorly girl, though. She's puffed her way through her breathing exercises today, with great difficulty, and she's all puffed out.

I just want her to get better, too.

Can't be doing with mobile phone-posting a video tonight, so knock yourselves out by Spotifying Puff The Magic Dragon. Or something by Puff Daddy, I suppose. But the dragon one will be better.

Tuesday, 9 August 2016


I am on a children's ward with my girl.

She's been uncharacteristically off-colour for a few days. Really lethargic, and with a niggly little cough. This morning, I took her to a duty GP at her medical practice, who listened to my worries (about how she's never 'ill' ill, about her high pain threshold potentially masking problems, about how she seemed to be unusually tired). He didn't dismiss me as an over-anxious mum, and sent us to hospital. 

A few hours, a few examinations, and one X-Ray later, she's in bed, in a packed ward, with oxygen being piped through her nose, and getting intravenous antibiotics for a chest infection that I suspect will keep us here for a few days. She's been watching Eastenders on a telly by her bed, with the audio being fed through the earphones I happened to have with me. I, on the other hand, have been listening to the sound of five - count them, FIVE - babies screaming.

It's going to be a long night.

[Struggling to post a song via my phone in hospital, so just imagine the video to Beastie  Boys - Sabotage (from the album Ill Communication)].

Tuesday, 2 August 2016


We’re into the second week of the summer holidays. I’m still sane. 

My boy spent five mornings of the first week at the Baptist Church Holiday Club. He’s going to the Anglican Church Holiday Club later on in the holidays because I believe in a multi-faith society, particularly when it comes with cheap as chips childcare.

Meanwhile, my girl read. And then read some more. 

In fact, she’s completed the library’s Holiday Reading Scheme already, which a weight off my her mind, my mind, and everyone’s mind. After years of taking part in the scheme, - which requires children to read six books to get a certificate, but 18 if they want a medal - she’s finally stooped to the tactic of choosing really easy books. (When I’d previously suggested this to her, I’d got short shrift).

So she’s read ’em already, and got another medal for the collection (the one with the ribbon, pictured). This is despite her being over the age limit for the scheme now, and being encouraged by the ‘library lady’ each year to switch to the scheme for older teenagers.

My daughter politely declines. “I don’t want to do that, thank you. You don’t get anything.”

She’s still got her nose in a book, mind. She’s reading Harry Potter, in preparation for our upcoming visit to the Warner Bros. Studio tour. We’re going to watch the films again, too, although with some tricky pausing and forwarding. “I don’t want to see You Know Who, because I’ll have bad dreams,” she decrees. So we’re going to have to do a Harry Potter marathon minus the Voldemort bits. It’s given me an idea: if my little lad wants to watch the Godawful Star Wars prequels, I am only going to agree if I can apply a similar censoring technique, and cut out Jar Jar Binks.

Song is David Bowie - She's Got Medals