Certain

I’ve not got much to say, for once. It’s all fairly simple.

I started going out with him when I was 17 and he was a 24-year-old lorry driver. I had no idea when I met him that he’d turn out to be the strongest, kindest man I know. 

My mum wasn’t overly pleased at the age difference, as you can imagine. I think she suspected him of being some sort of pervert. She was right, he was. But she soon realised he was also a keeper.

I’m glad I kept him. 

There’s really not a lot else I was right about when I was 17. Today, 22 years later, and on the occasion of our 16th wedding anniversary, I know he was the best decision I’ve ever made.

The sight of my daughter walking along the street with her funny little splay-footed gait, and her Stevie-Wonder bobbly head going from side to side, gripping his hand tightly, still makes me happier than just about anything else in the world.

On the darkest days, he’s been there. On the brightest days, he’s been there. He's the one I turn to when I laugh and when I cry. He's the only man I've ever loved. And in an uncertain world, with a daughter who faces an uncertain future, he’s the thing I’m most certain of.


Song is Kathryn Williams - Old Low Light #2

Video is Aretha Franklin - Dr Feelgood (Love Is A Serious Business). Good God Almighty!

Trees

A section of one of Pete Frame's Rock Family Trees

You know those Pete Frame Rock Family Trees? The exquisitely-drawn, maze-like diagrams of band members and how they interlace with other groups, branching out at every turn?

My daughter's Imaginary Friend Family Tree would look like one of those, only messier, and with more crossings out.  Her imaginary friends change from siblings to pals and back again to siblings from one day to the next. And I'm never sure of exactly their relationship with my daughter, or with eachother.  Sometimes they disappear for a year or two, then return. Where have they been? Hibernating like the Blue Peter tortoise? Actually, that's an accurate analogy, because sometimes they don't come back at all, and we all know of few of Janet Ellis and Simon Groom's little shelled friends never made it out of the cardboard box come springtime.

I think my favourites of her non-corporeal buddies were her two imaginary brothers. I asked her what they were called (she obviously hadn’t thought of naming them at this point, so she considered my question for what seemed like an age, then said, tentatively: “One’s called...well...” A light bulb appeared above her head. “One’s called Well!”

“And the other?” I asked. 

“Um...well now....” 

I guessed what was coming before she said it, a look of triumph on her face.  

“The other’s called Well Now!”

I don’t really want to go into the five imaginary “other dads” she made up for a short period of time. Mainly because I was a little concerned about some of the looks I was getting from her teachers when I dropped her into school. Quite what they thought about her home life and my sexual morals, I’m not sure, but I don’t think it was good.

Mind you, Other Dad No. 4, a motorcycle-riding jet pilot who was going to take her travelling across Africa, did sound rather nice.

Video is Berlin - Take My Breath Away, from Top Gun. I would like to point out that I in no way want to go riding off on a motorcycle with Tom Cruise. He might take me to see his lizard overlords. I was always more of a Goose girl than a Maverick, anyway.

Panic

My daughter’s face was stricken.

I could see the panic starting in her toes and rising up through her body. I needed to stop it before it reached her head, at which time there would be NO REASONING WITH HER.

“It’s OK, we can sort it out. It’s not a problem. Everything will be fine. Don’t worry. Listen to what I’m saying: it’s all fine. It’s all right,” I insisted, trying to keep my voice firm, and get her to actually listen to what I was saying.

So what had happened to put her in a tailspin?

The Asda delivery truck had been. We were on a tight timescale to have Sunday roast ready in time, and they’d missed one vital item from our order: the chicken.

You need to understand how DISASTROUS this is. It’s why I don’t often order groceries online. Meals have to be precision-planned and to happen at set times in our household - it’s part of the regime needed to keep our hungry daughter happy and calm. There is no margin for error.

“Listen, listen. I ordered chicken breasts too, and they've brought them, so we can have those instead of the roast chicken,” I told my worried girl.

I had to repeat this four or five times before she accepted it. But she wasn’t happy. The menu and method had changed. Food that had been promised had not been delivered. 

And so, despite tucking in to a good, hearty meal, with breast fillets instead of roast chicken, (but piled up, as usual, with plenty of veg), we had the full scale “I’m so hungry!” routine in the evening. It doesn’t happen too often. But the minor mishap had lodged in her brain and food was all she could think of.

So, I’d just like to send a message to the very polite and friendly delivery driver, who whistled a jaunty little tune as he sauntered back to his lorry.

You’re an utter b**stard.

Video is Alan Partridge - Knowing Me, Knowing Yule clip. It's not actually a chicken, but it's how I felt.

Video is The Smiths - Panic

Boots

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

Toast

It’s the simple things that make it all right. The little things other people probably don’t think twice about.

Like our breakfast routine.

Having a daughter with Prader-Willi Syndrome, who’s always physically hungry but has to be on a strict diet, means you have to keep a close eye on her in the kitchen.

But being obsessed with food means she wants to help with the cooking and preparing of meals. So I've started letting her make her own breakfast.

This doesn’t sound amazing, but it is, it really is.

I open the cupboard and lift down the cereal boxes and line them up in a row. My daughter gets her bowl, a spoon and the milk. And makes herself a ‘mix-up’, which is her name for having a little bit of everything. 

I keep out of the way, until she presents me with her bowl for inspection. “Is that too much, Mum?” she asks, anxiously, worrying I’ll take some away. I’ve never had to, so far. She has a knack for judging just the right amount.

Then it’s time for toast. And, incredibly, she’ll stick a slice on for herself, and one for her brother. She’ll spread some marmite on hers, and some chocolate spread on his. And so far, she’s not even sneaked in a crafty lick of the knife. Her desperate need to feel grown-up and independent is so important to her she chooses not to give in to her hunger. Although she knows I'm watching, so I suppose it's like forcing yourself not to kick the centre forward right in front of the ref.

She’s very nearly a teenager. I don’t know how many other mums feel quite so happy at the sight of their awkward, spotty offspring sticking some bread in a toaster. Mostly I think they want to swear at them and their mates for making yet another loaf disappear. 

I bloody love it.

Video is Morecambe & Wise's Breakfast Sketch

Video is Streetband - Toast. This really is a terrible, terrible, song. But it's about toast. And features an unfeasibly young-looking Paul Young, bless him.

Phantom

We came home from the hospital four days after my daughter’s first spinal fusion operation.

It was major surgery, to correct a dangerous curvature of the spine. It was a draining, nerve-wracking, terrifying, experience for us as parents, and a painful and confusing one for her as the patient. 

Now we were back at home, all of us still shell-shocked. She was morphined up. Sore, spaced out, and sorry for herself.

And there was one extra problem. Someone who has Prader-Willi Syndrome doesn’t physically feel full up. So the main way to deal with this - the only way to deal with this - is by distraction. 

But in her delicate state, it didn’t work.

She couldn’t concentrate enough to read, or play on her Nintendo DS. She was uncomfortable staying in one position long enough to do anything. In her drug-addled, confused state, her brain latched onto the one thing we never want it to: the fact she was HUNGRY.

At one point, she did a slow motion, shuffling, Day of The Dead zombie walk from her bed downstairs to the dining table.

“It’s dinnertime,” she said, her eyes shining out from her terribly pale and strained-looking face, gazing straight through me.

“No, you’ve only just had your dinner, sweetheart. It’s not time for food yet,” I told her.

“Yes. YES!” she replied. 

And then she picked up a knife and fork, carefully starting cutting her meal into bite-sized chunks, and tucked in, making appreciative “mmms”. Not stopping until she’d eaten every last scrap.

There was no dinner in front of her. No plate, no knife, no cutlery. She’d conjured it up in her head. I’d just watched her eat a phantom meal.

I was at my wit’s end. What the hell were we going to do? She needed to rest, but she kept getting up to “eat”. I’ve never felt so helpless in my life.

Then, the very next day, she picked up a book for the first time. (One of a set of 20 Animal Ark stories which we’d bought as a present for being brave in hospital). And challenged me to a game of Top Trumps. And needed less pain medication. And giggled. And was herself again.

No matter how dark a day is, the light always returns. Always.

Video is R. Dean Taylor - There's A Ghost In My House

Brother

My daughter wanted a baby brother or sister. Desperately. This was no reason to give her one, though. I mean, she also yearned for a Barney The Dinosaur, and there was no way she was having one of those b*stards.

But we wanted another baby just as badly. Which meant things were very difficult when we lost some along the way.

Eventually, despite the battle-scars my body gained in the trying, 10 years after we gave birth to our daughter, we cooked up a baby brother for her.

At nine weeks I had some bleeding and was sure I’d lost this baby like the others. That was it - I’d had enough of sitting in the Early Pregnancy Unit, having gel rubbed on my belly and being shown a scan that was missing the tiny, vital, throbbing heartbeat of life. A previous ruptured ectopic pregnancy had robbed me of one of my inner tubes. I couldn’t use a puncture repair kit to fix this. If this baby was gone, that was it. No more.

But the little bugger was there. Clinging on, stubbornly.  The shock of the good news surged through me and from that moment on I knew it would be OK.

How would our daughter cope with the reality of a baby brother? A brother who would at first have to be fed at odd hours, wreaking havoc with our strict mealtime routines? A brother who would end up eating some of the things she wasn’t allowed?

This photo is the moment I knew she’d accept this. It was my son’s second ever bottle of formula milk, after I’d given up breastfeeding when my portable, personal, dairy delivery system failed to keep up with its customer’s requirements. (I didn’t let her give the first bottle - I thought it wise to do a test run when she was at school).

“He has to have full fat milk, doesn’t he, Mum?” my daughter asked me. ‘Not skimmed, like me. I’m not allowed full fat.” 

“That’s right. Babies need it to grow big and strong.” I said. 
She considered this for a moment, and nodded.

“Good. We won’t use up all mine, then.”

This thing might work, after all.

Video is Sister Sledge - We Are Family. Yes, yes, I know it says: 'I've got all my sisters and me', but it's the general sentiment I'm going for, all right?

Forget

I sometimes forget my daughter has it.

I sometimes snap at her when she asks me for the 10th time when tea is ready.

I sometimes fail to remember that she’s not just being impatient. She’s not just tired or bored (although if she is either of these things then the intensity of her chef-bothering increases).

Having Prader-Willi Syndrome means my daughter is hungry. Physically hungry. All the time.

I could tell you about the science, and the tiny missing stripe* on one tiny chromosome that causes this. (*Stripe may not be the accepted medical terminology here).

But all you need to know is that the little switch in my daughter’s brain that should click on to tell her she’s full up doesn’t work. 

(Incidentally, the same little switch in my brain seems to develop some kind of fault within 20 feet of a cake. It must be an as yet undiagnosed syndrome. If any scientists are out there, I’m perfectly willing to help with research. As long as I get to eat lots of cakes).

She really can’t help it. She’s not being greedy. And amazingly, for the most part, she doesn’t plague me all the time for food. When her days are structured, and she has her set meal and snack times (a rigid school timetable helps here), she probably begs for grub less often than my toddler, who I believe is starting a new world religion which involves worshipping at the altar of the biscuit tin and praying to a God made entirely of Custard Creams.

So although sometimes I do forget, I try really hard not to. I attempt - not always successfully - to keep a lid on my irritation if she does get stuck in a food loop.

Because when I imagine what it must feel like to always be hungry, my heart aches for her.

Video is Bob Marley - Them Belly Full

Bananas

When my daughter was about three years old, a friend of mine invited me on her hen night.

This involved a group of us going to the local theatre to a performance of Sing-Along-A-Sound Of Music. Before you say it, I know it’s not exactly the height of sophistication, but compared to my hen weekend at Butlins in Bognor it was high class culture, believe me.

As part of the prescribed fun, we had to dress up as characters from the film. 

Not for me, the easy option of a generic nun. Oh no. I had to be different. I decided to go as ‘The Hills’. If I’m honest this was purely for cheap gag purposes. It meant if anyone asked me what I was, I could reply: “I’m alive, with the sound of music.”

But where to get the materials needed for my makeshift costume? Easy, I thought. I’ll pop into the greengrocers, and they’ll give me a spare bit of that plastic astroturf they use to display the fruit boxes on.

However, when I wandered in with my daughter (who I was still pushing everywhere in an oversized buggy), the fella behind the counter said: “Sorry, luv, no can do. It’s expensive stuff. What do you want it for anyway?”

It was at this point, I lied. Not wanting to wheel my girl round a fancy dress shop at the last minute, and thinking on my feet, I looked downcast.

“Oh, don't worry. It’s just my daughter. She’s disabled. She just loves this plastic turf. It’s very tactile and she loves to feel it. But it doesn’t matter. Never mind.”

The greengrocer looked slightly guilty at his earlier refusal, and took a small piece out from on the counter, placing it on my daughter’s lap, looking expectantly at her face. Of course, as her astroturf adoration was entirely fictional, she wasn’t remotely interested.

So I leaned forward and whispered in her ear: “Bananas!”

Instantly, she grinned from ear to ear, and the lovely man behind the counter ran, literally ran, to the back of the shop and returned with armfuls of the stuff for me. (Enough to transform me into The Hills, I noted, with satisfaction).

It was wrong of me. I know that. I invoked her disability, played on a stranger’s pity, and then used the hunger caused by her Prader-Willi Syndrome for my own selfish ends.

But I’m not a complete bitch. I did buy her a banana.

Video is The Dickies - Banana Splits

Poppy

At first, it’s hard to accept that your daughter could be bullying someone. But she was.

It was her best friend who was the victim. What’s worse, I let it happen. In fact, I think I even encouraged it.

Her name was Poppy. She was a bit younger, and was a slightly unfortunate little girl.

My daughter took her under her wing, invited her home for tea, and gradually, subtly, and expertly, made her life miserable.

When my daughter got off the school bus and told me about her day at school, she’d make a great effort to inform me how Poppy was ever-so-slightly worse than her at everything: PE, Art, Maths, English - the lot.

She often invited the hapless Poppy home for tea, and for sleepovers.

On the day my little girl had gone up a reading level at school, she’d look at her pal and shake her head, looking sympathetic. “What’s that Poppy? You’re still only on Level Two?”.

If they played Top Trumps or Uno, my little angel would cruelly point out: “You haven’t won one game yet, have you, Poppy?”

I did sometimes feel a twinge of pity for Poppy. But I still let my girl lord it over her whenever she wanted to.

Want to know why? 

Poppy was my daughter’s imaginary friend.

It didn’t take a genius to work out that my daughter was using her as a kind of mental punch-bag. Poppy was a construct for a little girl who was struggling to keep up with her peers at mainstream school, and whose self-confidence was dipping.

Poppy’s not around now. A new friend called Freya surfaces now and again, who seems to have a bit more gumption than her predecessor and will chat and even argue back with my daughter when she’s wrestling with some little worry or problem, or needs a bit of moral support.

As she makes her way through life, I look forward to meeting more of my daughter’s special friends. The fact that a girl with Prader-Willi Syndrome - which usually involves a very rigid, black-and-white way of looking at the world - has managed to conjure them up from her imagination, to make herself feel better, is quite an achievement.

Video is Lloyd Cole & The Commotions - Brand New Friend

Locked

"Quavers are better than Skips which are better than French Fries which are better than Monster Munch which are better than Walkers which are WAY better than Kettle Chips.
Mini Milks are better than Twisters which are better than Fabs which are better than Fruit Pastel lollies which are better than Calyppos but STEER CLEAR of Magnums.
Mini Jaffa Cakes are better than a box of raisins which is better than a Go Ahead Yoghurt Break which is better than an Alpen Bar but don’t even THINK about a Mars Bar.
Chips are bad. Cheese is evil. Fruit is my friend."

This isn't an actual quote from my daughter. But I'm pretty sure it's what runs through her head. (Well maybe not the 'cheese is evil' bit). The gospels according to calories and saturated fat content are somehow drummed into my daughter’s very soul. She’s spent all her life having her food controlled, as she needs a strict, low-fat diet to maintain a normal weight. 

At the moment, on the very rare occasions she is offered something she shouldn’t be offered (at a new hairdressers, where they give kids who have a haircut a sweet, or when a new classmate brings in choccy bars to hand out on their birthday), it’s HER that declines.

“I’m not allowed that,” she’ll say. For a girl who’s always physically hungry, this is pretty impressive.

She will twig. One day. It will suddenly hit her that by keeping quiet she could get extra and no-one would know. She will realise that sneaking into a kitchen cupboard and nabbing some grub, then trotting off to scoff it out of sight, just might work, dammit.

I’m dreading it. 
But I’ve got a pack of locks ready.

Video is Crowded House - Locked Out

School

A new term starts tomorrow at a new school.

She was at mainstream at first, but will now be going to her second different Special School. Along the way there have been SENCOs, IEPs and SSENs, and more BCAs than I care to remember.* 

(*Special Educational Needs Co-Ordinators, Individual Education Plans, Statements of Special Educational Needs and more Bloody Confusing Acronyms).

It seems a long time since I walked my daughter to the school gate for the first time. It is a long time - eight years to be precise.

I will never ever forget being able to do it. After the trauma and terror of her being diagnosed with Prader-Willi Syndrome, and the physio, speech therapy, hospital appointments, injections, and general hard slog, here she was. Walking - no skipping - into school.

I cannot begin to convey how relieved and proud I was.

Well actually, I can. Just look at my face.

Video is Creedence Clearwater Revival - Proud Mary

Swapsies

My daughter struggles with the concept of swapsies.

It’s an easy thing for me to understand. I’m not saying I was completely obsessed with World Cup football sticker collections as a kid, but my mate did once decide to nickname me Queen Panini.

So to me, swapping those two extra Kenny Sansoms for the Trevor Francis you needed to complete your Espana 82 England Squad made perfect sense.

Not so to my girl.

Yesterday, she finally completed the local library’s Summer Holiday Reading Scheme (no mean feat, as it involved reading 18 books). The theme this year was Circus Skills and included lots of little rewards as encouragement (a certificate, a wristband, stickers, a medal, and some Top Trump-style playing cards featuring cute monsters called Circus Munglers).

The helpful librarian had told us to pop in between 10am and 10.30am to collect her final prizes, as they were holding a Munglers Swapsie Session.

“Brilliant! You can get rid of some of your duplicates,” I told my daughter.

“But they’re mine. I got those cards for reading my books,” she said.

“Yes, but you can swap them.”

“But I want to keep them.”

“Yes, but you’ve already got more than one of them.”

“But that’s because I got them for reading my books.”

“Don’t you want to get all the characters?”

“Yes.”

“Well, you’ll have to swap them, then.”

“But they’re mine.”

After about 35 minutes of this going round and round in circles, I finally got her to understand that this was a way of completing her set and letting someone else complete theirs, AND MAKING EVERYBODY HAPPY, OK?

So we went to the library.

She took her cards.

And no other bugger turned up.

Video is Aretha Franklin - Share Your Love With Me

Language

It may be an international language, and I can certainly eff and jeff with the best of them when the mood takes me, but I do have my limits.

The line I won’t cross is this: I don’t swear in front of my mum and dad, and I don’t swear in front of my kids. Apart from when I do the odd monumentally stupid thing like dropping my car keys down a drain, obviously.

Now, I’m not an idiot. I know that my daughter encounters some fruity bon mots when out in the big wide world - say, for example, on the Special School bus packed with older kids with various levels of emotional and learning difficulties. But I take pride in the fact that she doesn't repeat them. 

Or so I thought.

Child Two (nicknamed Cato, for his interest in suddenly jumping on people in the manner of Peter Sellers’ trained surprise assassin in the Pink Panther films) was having a particularly boisterous day. And after one too many instances of him leaping on her and wrestling while she was trying to read, my daughter’s patience snapped.

Sitting over the other side of the room, out of view, I heard her utter the following phrase, perfectly enunciated, perfectly stressed, and, grudgingly, I have to admit it, perfectly sworn:

“Oh for F**K’S sake!”

I nearly fell off my chair. Spotting my husband’s shoulders go up and down as he tried not to laugh at the utterly bizarre sound of our sweet daughter somehow managing to swear brilliantly in context, I fled the room, in order to compose myself, covering my parental duties by saying, as I went: “You are in so much trouble, young lady. I’m so angry I can’t talk to you about it until I’ve calmed down.”

By the time I’d swallowed my giggles and returned, my uncharacteristically potty-mouthed daughter was in floods of tears. Before I could utter a word, she turned to me, looking stricken. “I swore Mummy,” she sobbed. Then confusion and panic set in. “Did I swear? I didn’t swear, did I? I did. I did swear.”

I then watched, in a kind of awestuck amazement, as my contrite child, so mortified by her own use of a really bad word, proceeded to tell me she should not be allowed to go to Guides that night, and then concluded her guilt-ridden, self-inflicted punishment by sending herself to bed.

Video is Super Furry Animals - The International Language Of Screaming