If you look closely at this photograph, in the distance, you’ll see a figure in a purple coat.
If you look again, you’ll notice that the figure is alone.
That’s my girl. My 17-year-old daughter, walking to school (well, part of the way to school), on her own.
Her teaching assistant has been calling for her in the morning and letting her take the lead on the quarter of a mile walk from our house to her classroom. The helper has been dropping back, ‘shadowing’ and offering help and advice where needed, as my daughter’s travel training has stepped up a gear.
This morning, she suggested that my girl meet her at the first road she has to cross, around the corner of our cul de sac and just a few hundred yards along.
Tomorrow, she’s meeting her a bit further along, after she’s crossed on her own.
Each day, step by step, my girl is being given more free rein, until she’s able to safely complete the short, but oh so epic journey. Solo.
I’m terrified, of course. But if my anxious girl can do this thing, this mundane, run-of-the-mill, utterly amazing thing, then I'll do my bit: let her.
We decided to do the old home-made sweepstake for today’s Grand National.
I took the kids round to Nanna and Grandad’s, we snipped out the horses’ names from the newspaper, stuck them in a bowl, and each of us picked out eight.
We decided on a stake of £2 per person, bringing the pot of winnings to a grand total of a tenner. Rather than let one person win the lot, I thought a £4 for 1st, £3 for 2nd, £2 for 3rd and £1 for 4th arrangement would prevent arguments for sore losers.
It wasn’t until they were under starter’s orders that I remembered how excruciating it is to watch a race with my daughter. From the first hoofbeat, she’s emoting loudly, directly into my left ear, anxious at every faller, asking if her horses are out or in, winning or losing, if they will finish, if they will win, if not why not, etc, etc. I forgot about the worry levels. Meanwhile, her brother is yelling into my right lughole that he doesn’t know which are his horses.
“I can’t hear! Quiet! I don’t KNOW who is going to win, they haven’t finished yet!” I exclaim.
As the race goes on, I see a lot of my boy’s horses falling, and start to think that maybe it’s him that is going to cause a problem today. He’s not the one with special needs (or special knees), but he can be a right mardy-arse when it comes to losing. I cross my fingers and hope that he gets a horse that’ll earn him at least a pound or two in winnings.
He didn't. My girl has the first three horses.
“AAAAAAAARRGGGGHHH! It’s not FAAAAIIIIIRRR!”
My boy is losing his shit. My girl is grinning. £9 is coming her way. Grandad is bagging the final quid. I’m six quid down as I paid for mine and the kids’ stakes. Why did I think this was a good idea?
Then I find out the winning horse is owned by Michael O’Leary, the owner of Ryanair, or as I like to call him Mr Fiddler (the grasping ‘that’s a paaaooound’ farmer from Carry On Camping).
I understand now. I understand the feelings of anger, frustration, temper, bitterness, and penury that my son feels. It’s just like flying on Ryanair. The jockey probably had to pay to take his saddle into the winning enclosure. He’ll also have to sort out a taxi to take him to his hotel tonight, which will be at least 40 miles from Aintree.
I’ll forget, of course. We’ll do it all again next year.Once more unto the Becher’s Brook, dear friends.
My daughter’s voice sometimes carries a long way. Some of her statements seem perfectly timed to ring out and shatter those odd occasional moments of silence in a conversation or a crowd.
Visitors to a local open farm were treated to one such tip-top declaration this week, relayed to me by the mum of PWSBFF (Prader-Willi Syndrome Best Friend Forever), who took the two girls there for the afternoon.
A crowd was gathered around a sheep which was giving birth. When the lamb’s head had been hanging out for quite some time, staff called for the farmer chap to come and help move things along.
The girls stood, fascinated, as the man rolled up his sleeve and did a James Herriot, rooting about to release the lamb, who plopped out onto the hay.
The commentary went as follows:
PWSBFF (disconcerted): “Mum - that’s the man who was helping in the café and he’s just stuck his arm up that sheep’s bottom. It’ll have poo all over it!”
My daughter (her voice amplified off the walls of the pen and booming out like a tannoy message for the hoards of wide-eyed small children): “No, no, no, I’ll think you’ll find he’s gone right up her vagina.”
My daughter’s school holiday sleepover tradition with her PWSBFF (Prader-Willi Syndrome Best Friend Forever) was upheld this week.
First, we had a girly trip to the cinema to watch a special screening of the recent stage adaptation of The Railway Children. A meal at Prezzo followed the steamy, red bloomer-flagging action (perhaps I should re-phrase that, as it sounds slightly dubious). Light menu choices were chosen, pasta and salad dishes were hoovered up hard enough to strip off plate enamel, and beaming faces beamed back at me across the restaurant table.
But it was an incident that occured when we all got back into the car which stuck with me, and made me smile.
PWSBFF managed somehow to shut her leg in the door (not to any serious degree, I hasten to add, and this isn’t, of course, what made me smile. What do you take me for?).
Clutching her shin, she let out some yelps, ows and ouches.
My daughter’s first response to the mini drama was this: “I hope you’re not going to keep me awake tonight.”
“Er, excuse me,” I pointed out. “Don’t you think you ought to ask if she’s OK first?”
My girl looked at me with incomprehension. PWSBFF giggled. I explained: “Sweetheart, when your friend hurts yourself, the first thing you should think of is to check she’s OK, not if she’s going to be noisy later!”
PWSBFF took up my tone of admonishment: “Yes, I thought you were supposed to be my friend!”
My girl looked stricken. “You are still my friend, aren’t you?”
PWSBFF giggled again. “Yes, of course I am!”
My daughter blew all the air out of her cheeks with relief. “THANK GOD!”
There was a slight pause.
“But she’s not going to keep me awake, is she?”
Music is Vic Mars - Fences, Railway Lines And Other Obstacles
In the boot was a bag of scrubs and ointments that have to be administered to various parts of my daughter’s body in the five days leading up to her upcoming operation. The lotions and potions are to rub on her hair and skin, stick up her nose, and swill down her throat, all to minimise the risk of her developing an infection after her back surgery. They came with an explanatory booklet with the catchy title: 'A Patients’ Guide To Staphyloccuus Aureus Decolonisation', which sounds like something Douglas Adams and Philip K Dick would have come up with if they’d written a novel together.
My girl’s pre-op assessment was complete. She’d been weighed, measured, had her bloodpressure done, had nasal and groin swabs taken (yuk!) and is now, officially, paperworked up to the eyeballs.
The ever elusive date is still to materialise, but the vague timetable has shifted from 'May/early June' to 'possibly April'.
My daughter panicked when the nurse said this. “April? It won’t be on the 13th, will it, Mum? Because we’ve got travel training at school that day.” (Travel training is where her teaching assistant takes her out to improve her road sense, trying to teach her how to safely cross roads, and how to catch a bus etc.).
“Sweetheart, you can do travel training any time - you do it every week, don’t you?”
“Yes, but I don’t want to miss the 13th. I DO NOT WANT TO MISS IT.”
“Right, I’ll speak to school and if the op does clash with it, they will promise to do it another day with you so you don’t miss out, OK.”
“Yes.”
“Are you happy with that?”
“Yes. As long as the op isn’t on the 13th.”
“Right. Remember, they’ve only said April - it could be any day in April. We just don’t know until we get a date, so there’s no point in worrying.”
“Ah, OK. Any day. Just not the 13th.”
Later, much later, when we were home, and the circular conversation had run its course, my girl headed for our TIVO box, and searched out her treasured saved programme folder of Topsy and Tim episodes.
“I’m watching the one where Topsy has her appendix out,” she told me, solemnly. “It’s like practice for me about being in hospital.”
She’s practised about a dozen times so far. Topsy and Tim are intensely irritating little shits, aren't they? Still, it could be worse. It could be Patch Adams.
We have the go-ahead. My daughter will have an operation to remove her spinal metal work.
It’s more than three months since her op was cancelled with just three days notice. It’s more than 10 weeks since she had a scan which would prove whether she definitely needed the procedure or not - but which no-one would tell us the outcome of. It’s been long enough for my girl to rack up astronomical repeat numbers for the question: “Will I have the operation?” It’s way past breaking point for me, after scores of phone calls trying to get someone, anyone, at the hospital to tell me what was happening.
At first I waited politely. Then I started phoning. Again and again. Again and again I was promised someone would phone me back. Again and again they didn’t. When the consultant’s secretary and I were frankly getting sick of the sound of eachother’s voices, I contacted PALS (the Patient Advice and Liaison Service) to ask them to get answers on my behalf. Again and again the answers didn’t come. I pestered. I really pestered.
Do you know what finally worked? There was a moment, when I was leaving yet another message on another answering machine, where I was recounting the sequence of events yet again, when I got to my teeter point. (Not the moment when I go all wobbly after to much wine, that’s different). No, this particular teeter point is when I’m having a difficult conversation (in this case to a machine, but hey, it was still intense), and when I feel myself getting a bit emotional. What I normally do is take a deep breath, make a decision to rein in the inner tumult and pull myself together. But not this time. This time, a little voice in my head whispered: “Fuck it. Let it go.” You know, like some sort of X-rated version of Frozen.
So that’s what I did. I didn’t stop my voice from breaking. I didn’t stop the tears from coming. I didn’t stop the anger from rising. I pleaded, I cried and I seethed, and it worked. A day later I got my answer.
It will be May, or early June. My girl is having a pre-op appointment this Thursday, which I snapped up before even hearing the time and working out the logistics of sibling school runs and early morning traffic and other extraneous bollocks. Nope, I was taking up the first appointment they offered, because that would mean she’d be ready to roll when a date comes up.
We have the go-ahead. Finally. We don't have an actual date, but we have a ballpark and the ball is in it. Oh, and I have something else. It's a recommendation to any parent lost in the labyrinth of NHS admin: Whatever you do, check, double check, triple check, pester, pester some more, pester again, keep on pestering, and sometimes, just sometimes, when you’re teetering, don’t step back from the edge - jump right off.
