Dilemmas, dilemmas

You have probably noticed that I make some effort to disguise La's most lovely appearance on this blog. It goes without saying that in our eyes she is a gorgeous young woman, if somewhat vain, but without being able to ask her if it's ok to out her pictures out there for the world to see, I'm reluctant to do so for now, at least.


Other decisions we make about her life maybe seem equally trivial (or are they?) are sometimes challenged and have us frequently pondering out loud on their implications.


One of the biggies is the issue of the Food Police. La has no preconceptions about how she should look or is any way capable of making a connection between what she consumes and its effect on her health. Added to that the sodium valproate she takes to control her epilepsy does give her a raging appetite and the end result is a bit of a belly and a rather rotund physique.


So how far should her carers go to limit what she eats and control her food choices? Yesterday she returned from the Day centre with a gingerbread man, flouting my instruction for fruit-only purchases. In the past I have found receipts for crisps and mega choccy bars in her bag. They would argue that the meals provided at the centre are all balanced and healthy and trips like this are for treats. I give her pocket money, La is over 18 and deserves some autonomy every once in a while. 


I kind of get the point.

I think my other daughters would describe the food I prepare and provide them as super-healthy compared to what other young women eat. And that's before we bring in the alcohol which, thankfully, is not an issue with La. I know I could actually go further so to me it feels like there are compromises. As with all mothers, if I were to make what I want, our dinners would be very different most days. We eat a lot of organic, almost always cook from scratch, limit red meat and fried foods and it's wholegrains, wholegrains, wholegrains for as far as I can get away with it. Too many refined carbs and fats are a bit of a no-no for me - but that's the current perceived wisdom, isn't it? The kind you find in all the mainstream recommendations about food and diet?

From the moment I started consciously controlling La's portions and diet, she immediately lost a significant amount of weight. How smug was I? However, she may be 'slow' but she 'gets there' when it really matters and after about a month, she became wise to my campaign and battle, as they say, commenced. A battle, I might say which has been raging now for at least 5 years.

In moments of despair, La's Dad does point out that she does not seem to be gaining weight. (She now resolutely refuses to stand on the bathroom scales.)  Although about 5' 3", she's a steady size 12/14 and has been for some years; when you look at her peers in the various places she attends, she's comparatively anorexic. I look back on the photos of La aged 13 and she's a slender young thing. Now, at best, she's 'chubby'. Am I wrong to get upset about this? Am I going too far to project my own ideas of physical goals on her?

Added to all this is that La is and always has been such a great 'eater'. She will devour four or five helpings of granny's apple crumble and custard while I'm balancing the benefits if the pleasure that is giving granny and the toll it will take on La's trousers.

Still, I persist. There is a bolt on the kitchen door which La has now mastered. Hardly a biscuit, cake or crisp inhabits the kitchen. We do love to bake at weekends but I get twitchy when the whole lot is not eaten at the first family sitting because La can sniff out leftovers hidden in the most ingenious places at the back of cupboards or hidden parts of the fridge.

The breadbin is a tricky one, as you can see, let alone any fresh-baked bread being left out to cool. La considers those an open invitation to gorge, which can have me screaming with frustration.

Last year we bought a fridge lock from America which is a godsend, I can tell you, especially as all the fruit now has to be saved in there. When I open the fridge to grab a quick carrot for the salad, La is upon me, out of nowhere, ready to grab at the leftover quiche or a slab of cheddar.

You only need to look at La to see that healthy, fresh, organic it may all be but too much of anything does not keep you slim.

In the next post, more dilemmas, and this time it gets even more political...

Doting Dad

I may be La's 'most of the time carer' but for a father with a full-on job and a few other, err, interests which take him away from home, I have to admit that when he's here, La's Dad is her favourite carer because of the attention he gives her.
  I found this photo today, taken about 20 years ago. I'm just days away from giving birth to Becky, La is wearing a jumpsuit I made her with bells attached to the belt and Dad's Dad is all dressed up behind us. I think it must have been a New Year party at his parent's house. La looks as if she's amused by the balloon I'm bouncing about in front of her and La's Dad seems to be looking on pensively, no doubt contemplating the future, near and distant.
  It has to be said that La and her Dad share a lot in common, including a devotion to 'fat boy' food, Stravinsky, dodgy 1970s bands (Rush, anyone?) and general loudness. If things were different, I bet she'd be playing a very loud instrument very proficiently by now, going off to football with her Dad on a Saturday and her bedroom would be just as messy.
  Whenever I return, having left La in her Dad's care, the house is trashed but there's a special, quiet, happy vibe about the place, plus evidence of a lot of fun and some hearty cooking and eating.
   It goes without saying that relationships where there's a disabled child are some of the most fragile so we must be doing ok to be still together so long after this pic was taken.
  Sometimes, I have to admit to envy of the way La's Dad interacts with her so utterly uninhibitedly. He never, ever fails to tell her how beautiful and clever she is, if she is at a particular moment and as he did this very morning. And she is, as is the incredible bond between them. 


La is lucky and she knows it. So I must be too.

Just me and La

La (left) and me

'What do you really want?' My yoga asked me today and like all carers, I found that one especially hard. My life feels so tied up with La that sometimes it feels like it's all a succession of compromises around what La will like or tolerate. I really don't want to sound whiney or pathetically passive but what I want doesn't very often come into it.

 At the moment La's Dad is away on business so it's full-on, undiluted La and me, with occasional moments of light relief provided by La's youngest sister when she's around. La is at her day centre between 9am and 4pm so the hours between are a mish-mash of doing stuff La can't stand me doing while she's here (making telephone calls, shopping, working on my computer) clearing up after La and then fitting in time for myself.

 This morning La woke me up at 4.30, 5.10 and 6.03am and then I gave in, made her breakfast and kicked off the morning routine. Every action is duplicated whether it's loading a toothbrush or putting on a pair of socks. Once for La, once for me. There's a twist as La is less than cooperative through most of this: while I make her breakfast and packed lunch she grabs food on the worktops or what she can snatch while the fridge is unlocked, she's reluctant to move the limbs when I'm dressing her, clamps her mouth shut when I attempt to brush her teeth and lies down flat when I try to get her hair into some kind of order. You could call this stubborn defiance boringly predictable but it's also quite impressive and rather funny if you can keep your cool and not show your frustration as the clock ticks away.


 After 4pm, I'm led by La. I make the tea, maybe do some ironing, clear up, get her ready for bed.

 Right now, it's 7pm and we are already in our pjs, everything is cleared up and the evening stretches ahead of us.

 I think about the rest of our family - La's Dad is probably getting ready for a meal out with colleagues in Madrid, the three sisters are with their partners/friends and the night is young.

 There's a certain comfort to this easy companionship, sitting here with La nodding off on the opposite sofa, Channel 4 news in the background, there's even a homemade loaf baking in the oven and some new books on the shelf next to me... as well as a feeling of life just slipping through my fingers while I look after La...

La in the car

La was in Respite Care on Saturday and Sunday, Monday was a bank holiday - Dad off work, La's day centre closed but forget the vile weather forecast, a day out it had to be.
 At home, La nags pretty incessantly for 'Car, car' so car it was. La's Dad proposed that old standby, a trip to the seaside but with heavy showers, low temperatures and blustery winds on the cards, I came up with the idea of going to the town of Battle for a dose of 1066 and all that. La's Dad agreed it was a good idea. We had driven through a few times on our way back from Hastings and berated the fact that we had not allowed any time to stop.
  Battle met a few necessary criteria for a successful day out for La:

• A bit of a drive, not all on big roads
• Plenty fo eating options, not all fish 'n' chips
• Stuff to see, though not an overwhelming amount which would mean La zones out and we became frustrated

So three of us bundled into the car with various necessities of the day - which for us meant apples, La's music, baby wipes, spare pads and our blue disabled badge. La always travels with one or more of her cherished 'sniffy' pillows, a magazine and as many plastic bags as she can smuggle on her person into the back seat.

  Once en route, La invariable changed the whinge from 'car' to anything else she can think of, notably home, bed, bus, Anna, Becky, etc.

   In the end, she gave up, distracted by the hordes of motorbikes seemed to be heading towards a day out in Hastings - La just loves exactly the thing that annoys the hell out of us,  their noise.

  About 20 miles before we arrived, suddenly our nostrils were assaulted by a stench that was not going away. Travelling with an incontinent adult has its moments, however prepared you are. We were lucky and found a service station with a disabled loo... to find that after all that we did not need it as a discreet and casual check of an indignant La as she was persuaded to step out of the car, proved it was all just a very bad case of extreme wind. This discovery made La smile quite smugly at her relieved parents but as La's Dad said as we resumed our journey, 'it's only a matter of time.'

  I won't trouble you with the delights of Battle, I'm no expert; La permitted a mere cursory glimpse of its historic delights as she galumphed up and down the main street and into the various eateries. (William the Conqueror's magnificent Abbey is for another day, sadly.) La's main concern, as ever, was lunch and we did venture into a couple of delis, only to be put off by the throngs of tourists fighting for shelter from the cold and the few last tables and sandwiches.

  Our eventual experience of lunch at The Pilgrim's Rest has, I have noticed, been oh so accurately reviewed by previous visitors. Let's just say it was Fawlty-esque with enthusiastic but hilariously incompetent service. Which was a shame in a way because the food was fine, when it finally arrived and the building and front garden total stunners.

  Walking back up the main street, the inevitable happened, of course and La urgently announced 'Pooh!', by which time, of course, it was too late. La's Dad had noticed signs to a disabled toilet in our car park so we hurried her past all the other day trippers in the hope they did not notice the toxic smell.

  In brief, due to La's extreme cooperation and goodwill, we managed fine in the end but WHY ARE DISABLED TOILETS SO OFTEN LOCKED? It didn't even have an unhelpful sign to tell us we needed a special key from the town hall or wherever which is not bloody good if you are random, if desperate, day trippers.

  Rant over but a classic and pretty successful day out with La and plenty of car.

  

The sisterhood

La is all the wonderful things she is due to a large extent, in my view, to growing up in a big, bustly family such as ours.

  The second of four girls, one by one they have grown up beyond her and to a larger or lesser extent, become her carers. My Mum has a poignant memory of a tiny Becky spoon feeding a much bigger sister when she had to be well under 2 years old herself.

   Looking back, I can get quite teary worrying about the effect having such a needy, noisy and embarrassing sister must have had on them when they were really tiny. Anna, age 3 had waited quite a while for a sibling companion and what did she get? A whiny little sister who puzzled all of us and took so much of her parents' time and attention.

  La was two and a half when Becky turned up, a bruiser of a baby who nonetheless was defenceless when La developed the horrible habit of pulling at the baby's lustrous hair. She still bears a tiny scar near her eye from a time when La woke her up by clawing at her face.

  Melissa, five years later, had to cope with the same old crap. La still needed a buggy so I often had the baby in a sling as I manoeuvred a double buggy. It wasn't long before an ever-independent yet tiny toddler Becky gave up her seat to help me push the oversized La with her sister 5 years younger.

  As La's youngest sister. Melissa will be off to university in September, it will truly be the end of an era.

  La, her Dad and I, but most of all La, who can't work out when she will see them again, suffers most. Ironically, Anna and Becky probably miss La back rather than their parents. It's not as if they can have a cheeky Facebook exchange with La or a quick chat before they go out for the evening to keep the love alive. 

  When they call they want to know what La's up to and I have to relate the last funny thing she did or said. Only time will tell whether they are more positives than negatives growing up in a family such as ours. I just hope the girls look back and know, although it was tough, we really did our best.