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.
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.
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)].
Last night, I stood up, behind a microphone, in the upstairs room of a pub, in front of a room of strangers (see yesterday’s post: True).
I took a deep breath and I told my ten-minute-long story. Despite my nerves, I told exactly the story I wanted to tell, exactly the way I wanted to tell it.
It was about those traumatic few weeks after my daughter was born. I’ve written about this on the blog (mostly in my first few posts back in June last year).
I chucked in the odd gag, to lighten the mood. A joke about my enormous knockers went down OK. You’re usually guaranteed a giggle from the men if you mention big boobs - apparently it’s the ghost of Benny Hill armed with a psychic tickling stick.
But there was one thing I spoke about for the first time. Something that was very hard to admit. I’ve just got off the phone to my mum, and she asked me what the “big secret” was that I had promised to “reveal”. (I think I got a bit over-dramatic in yesterday’s post).
I couldn’t tell her on the phone. It sounded too cold, too stark.
So, sorry, Mum, as usual, you can find out all the stuff I’m too tongue-tied to say in real life by reading this. I know, I wasn’t too tongue-tied last night, but they were strangers, and the light was dazzling, and I wasn’t actually looking anyone in the eye...
Just as I thought long and hard about sharing my story last night, I’ve thought long and hard about sharing my “script” here on the blog.
And I’m going to do it.
I would apologise for the length, but hell, I had to learn this baby off by heart, so you’re getting the lot! Oh, and Mum? Sorry for swearing.
TRUE STORIES TOLD LIVE
Thirteen years ago, I was very, very pregnant. (Not just fat like now). I’d been in to see my consultant when I’d gone a week past my due date, and he’d examined me and booked me in to be induced.
This was the cue for friends to give me lots of advice on how to make the baby come naturally. The top three tips were raw pineapple, curry and sex. I wasn’t exactly sure which order to have them in, or, indeed, if I was supposed to combine them.
Nothing worked. (Interestingly, though, I have since adopted "raw pineapple, curry and sex" as a mantra for life, and it's going great).
So we trotted along to hospital on the allotted day, and that was when everything began to go wrong.
The baby was the wrong way up. And it had also decided to, how can I put it, “use the facilities before checking out of the hotel". So I was rushed for an emergency Caesarian.
I’ll say this for the NHS: they give good drugs. The anaesthetist asked me how tall I was as I was about to be taken into surgery, presumably checking dosage levels. "5ft 5in," I told him, starting to feel pleasantly spaced out from the injection. One of the nurses pumped the foot pedal to lower my trolley bed a little. "Hang on!” I said. “I’m only about 5ft now...”
And in I went. Up went a little screen, much rummaging went on behind it, and much grumbling came from the senior consultant. He wasn’t happy. He glared at me and said: “Why didn’t we know this baby was breech? You must have seen your consultant. They really should have picked this up. Who was it?”
I took great delight in telling him. “You.”
The rummaging continued, now accompanied by Olympic levels of harrumphing. And then, suddenly, amazingly, my baby was here. It was a girl. A beautiful girl. My Josie.
At first, we had no idea anything was wrong. Looking back now, I can see in the photos that she was blue around her mouth and her fingers and toes were the same colour. But everything seemed perfect, apart from the fact that she wouldn’t feed. This surprised me, because let me tell you, my tits were frankly enormous. So I had the Good Breastfeeding Cop, Bad Breastfeeding Cop treatment from two nurses. Nothing doing. Good Cop finally took pity on me and sneaked me a bottle of formula milk, but Josie couldn’t even manage that. She didn’t seem to be able to suck.
The paediatrician did his routine checks, lifting up her arms to look at her muscle tone. They flopped back down on the bed with a thump. He walked into the corridor with a colleague, closing the door behind them. I watched through a porthole window. Watched them deep in conversation. And I knew. I knew something was seriously wrong.
Five minutes later she was whisked into special care. Bad Breastfeeding Cop nurse couldn’t look at me. Good. Silly cow. Josie was put in an incubator, and covered with tubes and wires. No-one could tell us what was wrong and we had to wait. For weeks. In a stiflingly hot parallel universe filled with tiny babies struggling for life. And they ran test after test after test.
And then the time came. The invitation to join the people in white coats in that room. You can spot that room easily. It’s as drab and grey as all the other rooms except it has cheerful curtains and a box of man-size tissues on the table. This is a room that positively reeks of sadness and disappointment and lives turned upside down. A bit like Butlins.
The blood tests and investigations had finally produced a result: our daughter had a very rare chromosome disorder. We were given a print-out of a website page, telling us what it meant.
As I read the details, I was physically winded. It felt like someone had punched me in the chest. All the air was knocked out of my lungs.
Its name was Prader-Willi Syndrome (named after the doctors who discovered it). It affects the part of the brain which controls appetite, growth and sexual development. People with PWS are short, have learning disabilities, are socially immature, can’t have children and are unlikely ever to be able to live an independent life.
And although they’re too weak to feed as a baby, children with PWS grow up to have an insatiable appetite, and never physically feel full up. They are always hungry. But, because their bodies can’t convert fat to muscle efficiently, they have to be on a strict diet. For life. If their food intake isn’t controlled, they will suffer from life-threatening obesity. It’s a double whammy. Torture squared.
Oh. And there’s no cure.
Thirteen years on and that time, that bleak, bleak time seems like somebody else’s nightmare.
I wish I'd known then what I know now. I wish I'd known then how our daughter would slowly grow stronger, and with the aid of various casts, braces, wheeled walking frames and contraptions, would learn to stand, to walk, to run, to dance.
I wish I'd known then how each milestone reached would bring such elation.
I wish I'd known then that the uncontrollable appetite could usually be managed - to some degree - with lots of planning and distraction. And with the help of her limited understanding of fractions. “Mummy, if I cut this in half, is it twice as much?” “Yes. Yes darling, it is.”
I wish I could have looked five years forward and seen myself gripping my girl’s hand tight when I walked along with her as she skipped through the gates for her first day at school.
I wish I could have seen the look of glee on her face as she belted out a pretty stirring rendition of “Sheena is a Punk Rocker” to her new teaching assistant when she learned her name was...well...Sheena (who I’m not sure was a punk rocker. Except possibly on weekends).
But there’s one other thing I wish. And this is the difficult one.
Before we got my daughter’s diagnosis, in amongst the hundreds of tests was an MRI. And the doctors had showed us an image of Josie’s brain. Showing up in stark contrast to the grey, walnutty swirls were five or six little, white wiggly lines, like tiny worms.
“What are they?” I asked. “What do they mean?”
“We don’t know for certain,” they said. “They could be scar tissue. And they could indicate permanent brain damage.”
It turns out, of course, they didn’t mean that at all. They were a red herring. To this day, no-one knows what they are, but they don’t seem to have had any effect on her life. They’re just there.
But we didn’t know that at the time. I looked at that scan, and I thought of my daughter lying motionless on that hospital bed, and I thought she’d be like that for life. Trapped. Unable to breathe, unable to talk, unable to feed herself, unable to move.
It shames me to my bones, but I wished her dead. I wished my beautiful, new, baby girl had never been born.
God I want to go and slap my stupid face. I want to yell at myself: “Don’t you KNOW? Everything is going to be ALL RIGHT!”
Because it is.
Now I know I’m a lucky person. I was lucky enough to meet my husband, the strongest, kindest man I have ever known, when I was too young to actually appreciate that’s just what he was. To be honest, I just thought: nice face, nice arse.
And after some false starts we were lucky enough to make Josie. The ingredients might have been a bit off, but we made her. And do you know what? She’s a happy girl. She leads a good life. She was Cinderella in the special school panto (that was a show and a half). She goes camping with the Guides. She loves Justin Bieber. I’m not going to pretend life hasn’t been tough. (The Bieber love has been particularly hard to stomach). But God, it’s also been FUN. And joyful.
We’ve even been lucky enough to make another one. A boy, who's three now, with no health problems. Who - if I’m brutally honest - is 10 times the trouble that his sister is. The little bastard.
So now I’ve said my secret out loud, it feels good. Like opening a valve and letting that toxic thought finally escape. I think it’s time. Time to move on.
Video is Piney Gir - Outta Sight (One of the storytellers at True Stories is always a musician who also performs a song, and Piney Gir was last night's troubadour.)
Thirty quid. I had no idea kids' shoes were thirty quid a pop.
My daughter couldn’t walk until she was three and a half. We attended hospital appointments galore, and had to use leg splints and other contraptions and get her to do various physio sessions, and all the while, the hospital were supplying the footwear.
To be fair, the boots were pretty cool.
I’m sure, in years gone by, NHS orthotic boots were clumpy black monstrosities. Hers weren’t. They were supportive, round the ankle, yes, but they didn’t look like miniature Frankenstein’s monster shoes. They were suede, with little cats on the side. Her first pair were red, her second were blue.
(Admittedly, I might be biased when it comes to boots. Have a look at some of mine in the photo, above: the orange pair were my favourite in my teens; the cream ones, of course, were my wedding shoes).
When the time finally came and my daughter didn’t need specialised hospital boots, I headed into Clarks. Picked a nice, dainty, little, flowery pair of shoes.
And nearly fainted when I got to the till.
Video is Nancy Sinatra - These Boots Are Made For Walking
Question: How does someone know that they shouldn’t eat the bone on a chicken drumstick, if they’ve never had a chicken drumstick before?
Answer: They don’t.
If cooking chicken for my daughter, in accordance with my husband’s motto in life - "Always go for the breast" - I’ll pick healthier, skinless cuts.
But there was this one occasion, running late, frazzled, and faced with a poorly-stocked Co-op shelf, when I grabbed a pack of chicken drumsticks.
Having cooked them, I plonked one down in front of my girl, along with some new potatoes and a mountain of salad, and then proceeded to knock over a glass of orange juice all over the table, chair, floor, radiator and wall. My attention was elsewhere for a good few minutes.
When I looked back, my daughter’s plate was clean, apart from a few splinters of bone.
Five hours later, the A & E doctor finally saw us, felt her throat and belly, and announced that it must have been a reasonably soft bone, and my daughter must have “munched the bejaysus out of it”, because there were no bits stuck anywhere they shouldn’t have been.
Prader-Willi Syndrome means you’re constantly, overwhelmingly hungry. And when someone is controlling your portion sizes, you’re damn well going to eat every last bit.
Every nine months, we had to get my daughter plaster-casted. Wrapped up in warm, Plaster-of-Paris-coated bandages, like a miniature Egyptian mummy.
The problem was that when she finally gained the strength to sit up, she was lop-sided. Scoliosis (curvature of the spine) was diagnosed, and like a sagging bridge, she needed some sort of scaffolding.
This came in the form of a body brace. A plastic strait-jacket which she had to wear day and night. As she grew, new ones were made to fit the exact contours of her wonky torso using moulds made at regular plaster-casting sessions. We used to return from the hospital with white flecks on our clothes and in our hair, like the oddest painter and decorator team you’d ever seen.
Later, when she learned to stand, she had to get up like a baby giraffe, spreading her legs out wide to get her balance, as there was no ‘give’ in her top half.
We could only hug her properly for half an hour around bathtime when we were allowed to take off the brace. My husband and I would fight for cuddles like drinkers jostling their way to a free bar at a wedding, knowing the money would soon run out.
We used to banish night-time fears of monsters by making up a story of how a big, bad wolf crept into her room and tried to bite her, but slunk away, after hurting his teeth on her cast. Mr Wolf told all his monster friends not to try to eat up the girl with the indestructable superhero armour.
She doesn’t have to wear it now. When she was first free of it, she felt vulnerable. And I wished I’d not told her that bleedin’ wolf story.
The video below is 'Cast - Alright'. I resisted the terrible urge to post something by Phil Collins from No Jacket Required. No, no, there's no need to thank me.
Twice a week, I used to get in a hot tub with a load of strangers.
That’s not quite as dubious as it sounds. Strictly speaking, it was a hydrotherapy pool. The water temperature was so warm that, with a little patience, you could have poached an egg in there.
My floppy-limbed daughter needed her muscles strengthening. And the weightlessness afforded by floating in water meant exercises were less effort. So I took the plunge and swished about in the hospital pool with around half a dozen other mums and dads and their children.
It was a revelation. I’m not talking about the hydrotherapy itself. Nor the sight of me in a cozzy. What boggled my mind was the experience of being up close and personal with other disabled kids, with problems that made my daughter’s condition seem like a walk in the park.
There was one girl in particular. She could just about move her eyebrows, and that was it. The rest of her was paralysed. During that first session, I kept stealing glances at her. I thought her life and her parents’ life must be abject. No movement. No response. No feedback.
And yet after a few weeks, I could tell whether she was tired, cross, or happy. And I started to realise that if a stranger in a pool could pick up these signs in just a couple of half-hour sessions a week, despite initial appearances, she and her mum must have incredible rapport.
And then came the real revelation. The Eastenders' doof doof moment: Her mum wasn’t her mum. She was a foster carer, and she was in the process of adopting her. Voluntarily taking on a child with such huge problems.
I still think of them. On very bad days, and very good days. For me, they epitomise the worst that life can throw at you and the best it can throw back.
The moment had arrived. The invitation to join the people in white coats in that room.
You can spot that room easily. It’s just as drab and grey as all the other rooms, except it has cheap, flowery curtains and a box of man-size tissues on the table (with the rest of the multi-pack stacked in the corner). The emotional forecast in that room is for torrential tears and persistent weeping, with the chance of heavy sobs. Think Butlins.
The three and half weeks of waiting were over. The blood tests and investigations had finally produced a result: our daughter had a very rare chromosome disorder. We were given a printout of a website page, telling us in black and white what this meant. I felt like I'd been punched in the chest. The name of our daughter’s problem was Prader-Willi Syndrome (named after two of the Austrian doctors who discovered it).
At that time, most people knew me by my old nickname, which came about by someone shortening my maiden name, and adding ‘y’ on the end. Making me ‘Willy’.
So my brand new baby girl had just been diagnosed with a life-long, potentially life-threatening genetic disorder with a stupid-sounding name that matched my stupid-sounding name. Because things obviously weren’t quite surreal enough.
Incidentally, many people in this world still call me Willy. Including my husband, who - when he shouts out loudly to me in the aisle at Tesco - resembles nothing more than a Tourettes sufferer, mid tic.
At first, I didn’t realise they were working together. They were so different. One was aggressive and contemptuous; the other was tender and concerned. “Right, come on now, you need to start doing this properly. You’re giving up too easily,” the first one snapped. When she left the room I gave the other a pleading look. She raised one eyebrow, sympathetically. “Please,” I said. “Can’t you help?” Finally, she nodded. “I’ll be back in a minute.”
It felt like an interrogation room scene in a film. I was under the care of Good Breast Cop, Bad Breast Cop. These were the nurses I was turning to for help after yet another attempt to breastfeed my new baby had failed.
Soon, my paediatrician realised my daughter’s floppiness, her inability to suck, and the blueish tinge around the mouth and to her hands and feet, were signs that something was seriously wrong. We were whisked away. To the Special Care Baby Unit. Bad Breast Cop couldn’t look me in the eye.
(Video clip: Good cop, bad cop scene from L.A. Confidential)
You've got to hand it to the NHS: they give you good drugs.
"How tall are you?" the anaesthetist asked, as I was about to be taken into surgery. I presumed he was checking the dose for the epidural. "5ft 5in," I told him, starting to feel a little spaced out from the injection. One of the nurses pumped the foot pedal to raise my trolley bed a little lower. I frowned, concentrating hard. "No, wait, I'm only about 5ft now."
My husband arrived wearing scrubs. "You're not effing doing it," I told him.
The consultant about to perform the emergency caesarian looked like Geoffrey Palmer, with those puffed-out, pompous jowls. There were about a dozen other people in the theatre, all scurrying about at his command. He wasn't happy. "This baby is breach. You must have seen your consultant last week. They really should have picked this up," he said. "Who was it?"
"You," I replied, causing a mass outbreak of coughing from behind his junior colleagues' masks.
I was shielded from the gory details by a green curtain. The top of me was shaken around by violent rummaging I couldn't feel. A cry. Then my husband was handed something. He passed it to me. A slimy, sleepy, beautiful wrinkled girl.
Perfect.
For a day, that's what we thought.
"Eight miles high, and when you touch down You'll find that it's stranger than known Signs in the street that say where you're going Are somewhere just being their own" (The Byrds - Eight Miles High)
The registrar gave me an odd look. I thought about it when I walked out of her office, and went to the pub with my workmates, who didn't know what to say to me. That was OK, because they were willing enough to ply me with drink. I got a lift back to the hospital again. It was only then I realised that under my coat, which now had a freshly-printed birth certificate in one pocket, I was still wearing my pyjamas. You'd have thought someone would have mentioned it.
One in every 25,000 they said. A rare occurence. A whole decade would go by in their maternity ward before another one would arrive. When they told me that it made it worse. Nothing had gone to plan. Everything had gone wrong. And yet. She was beautiful. I was raging and terrified. But she was beautiful.
This song transports me back there. Wires, by Athlete, written by the lead singer about the premature birth of his daughter:
"Running, down corridors, through automatic doors
Got to get to you, got to see this through,
I see hope is here, in a plastic box,
I've seen Christmas lights, reflect in your eyes,
Down corridors, through automatic doors
Got to get to you, got to see this through."
I wish I had known then what I know now. It would have made those long, dark days and nights easier to bear.
"First night of your life, curled up on your own,
Looking at you now, you would never know.
I see it in your eyes, I see it in your eyes,
You'll be all right."
And she is, you know. All right.
Oh, and there's one other song, too, that I'll forever oddly associate with this time. Alone in the tiny room in the middle of the Special Care Baby Unit, attached to the noisy, industrial Black & Decker-sized breast pump, I had to hum something to keep myself amused:
My girl is out of hospital and home. 
