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?