Thursday, 27 February 2014

a crisis

N's TA is leaving school at the end of term. She has been offered a better paid post at a special school closer to her home.

This is a major crisis for us. Without a TA who can support her at school; communicate with her, tube feed her, change her, supervise her so she doesn't fall, drive her to swimming and riding and do her stretching exercises at lunch-time, she will not be able to manage in the mainstream school environment.

We love the children's current school. It is a small village affair and from grassroots level up, they have been fantastic at supporting N. All the children know her, she loves going and joining in the class activities and  playing in the playground with her peers. At the special school, there are a large cohort of children who do not communicate because of their disability for one reason or another; and this is the reason that we chose to go the mainstream route for her this time last year.

However. The SENCO at school only has four hours per week to deal with all the children with additional needs. And, in my opinion, looking at it from the outside, that is not enough. It takes forever for phone-calls to be followed up, for emails to be sent or replied to and for anything to get done.

Now the TA is leaving, they will need to re-appoint. They want to appoint a job-share, which I think is a reasonable aim, giving them potential cover for illness and so on. However given N's very complex needs, I think they are probably going to have difficulty finding one, let alone two, people to fill the role.

We are starting to feel that the struggle to keep her in mainstream - to get training sorted for feeding her, for using the suction pump, for getting the standing frame and the seating and her electric wheelchair and her walker and her manual wheelchair all used properly - is too hard. If she was in a special school, all of that stuff would be covered automatically; they do it every day. A bus would be available to take her in every morning. Her physio and swimming and riding would be part of her school routine rather than bolt-ons that we would have to organise.

It would be so much easier for all of us - for B and I, and for L.

I feel so guilty though, thinking that, because the social side of school is something that N gets such a lot out of. Balancing the needs of us all as a family unit against the needs of N is extremely hard and it's not going to get any easier.

Saturday, 22 February 2014

playing the blame-game

It's been a pretty stressful week. N was admitted to hospital again on Tuesday night with breathing difficulties. She had a nebuliser, oxygen and IV antibiotics and is now home with oral antibiotics. It was relatively traumatic* and since she came out late on Thursday night we have been attempting to chill out a bit and catch up with ourselves. We are now cruising on down towards a few nights at the Childrens' Hospice at Barnstaple next week, for a proper rest.

I am continually touched by the kindness of both friends and strangers when something like this happens; the practical offers of help;  the people in the village who saw the ambulance outside and texted to offer help; the text messages that say 'saw your facebook status and we are thinking of you, let us know if there's anything we can do to help'; the friends from far-away who messaged me to say that they can't do anything practical but to expect a delivery of wine in the next few days to try to make up for that a bit**.

It seems to me that all families with a special child experience a profound sense of dislocation when the disability first become apparent. I suppose that it's similar to the way your friendships change when you first have children, but more extreme. People either get it or they don't. They fade out and other people, who do understand your situation, who are perhaps in that situation themselves, fill the empty space. There are people that to begin with, I missed desperately; not their fault that they couldn't take on board that my inability to communicate properly was down to the amount of stress being heaped on our lives.

The blame-game is one that we play daily with our children. From 'was it something I did or didn't do during pregnancy that caused this?' via 'can her system stand an elective general anaesthetic to change the PEG for a button?' to 'am I cleaning the stoma properly?'; from 'should I really have kicked up a fuss like that with the NHS to get her seen earlier?' via forcing her to wear her night-splints when she hates them to 'will school make sure she eats enough?'. I second-guess my way through each day and I simply don't have time in my life for people who don't get that.

Only the most robust of connections with other people survive this furnace that our lives have become; and we value them, because they are what anchor us when the shit hits the fan and everything descends in to chaos.

There is no room for guilt or blame; and all we can do is move forward on the journey and be thankful for the people who have chosen to travel it with us.

* Note my judicious use of understatement there.
** You all know who you are and if you are reading this, thank you.

Tuesday, 18 February 2014

my grandmother's hands (first draft)

I have my grandmother's hands.
Long fingers and a wedding ring
the curve of the knuckle near the neat nail.
Age spots on the backs,
Thin skin and callouses
tell the story of a life.

I have my grandmother's hands.
I bind a cut on my daughter's finger
in the same way my grandmother remembered
her grandmother binding hers
as she bound mine.

My grandmother's hands tell so many tales.
Two World Wars, a marriage, a child;
Hard times, better times.
hands to the wheel, hands to the pumps
hands soothing a sick child
hands that discipline
hands that reward.

An image in my mind of hands pouring tea, buttering bread
Laying the table with the plates with pheasants on them
Darning a sock and threading a needle.
Holding mine as we walk to the station to watch the trains,
warm in the winter sun
Holding mine as I sit beside her bed,
cool with approaching death

Long fingers and a wedding ring
the curve of the knuckle near the neat nail.
Working hands, loving hands
That pass these memories down the generations.
My daughter has my grandmother's hands.

Monday, 17 February 2014

anarchy is all very well ...

B is up to his elbows in the drains. Mental note to self. Buy some drain covers to keep the leaves from clagging them up. There are two trees down in the garden, one of which in quite big, actually, and just missed the conservatory on it's way over. And the trampoline is in the magnolia.

I'm hoping that's that for the foreseeable future. I'm thoroughly sick of it now - the ground is so clagged with water that there's simply nowhere for it to go. The livestock are all humpity-backed and miserable; the chickens' feet are so muddy that the eggs are disgusting, however regularly you pick them up; and there are six panes of glass out of the greenhouse that I want to put back in before I plant anything.

We are not anywhere as badly off as a lot of people; but I won't be sorry to see the back of winter and get on with spring. The snowdrops are coming through and the wild garlic will be here soon, which is always a turning point in my head. Spring isn't heralded by the song of the Thrush and the chipping of little chicks; it's announced by a duck egg and wild garlic omlet.

Last weekend, I had to cancel a Chicken Keeping course because of the weather; and rescheduled for yesterday. Which was fine in principle, because it was beautifully and sunny. But not so good in practice, because N was admitted to the children's ward on Saturday afternoon with a chest infection. It was all a bit scary, with an ambulance ride from the outskirts of Taunton because she stopped responding to me, her temperature went through the roof; and the traffic tail-back was so horrific we had no other real option. One chest x-ray, some blood tests, Amoxycillin and Ibuprofen later, she was quite a bit brighter and we came home yesterday morning.

As a household, we are still gold-medal winners in the 'Snot' category at the winter olympics; however things are progressing in the right direction and we are settling in to half-term nicely. L is still in his pyjamas and is watching Batman cartoons with great joy. And volume. Whilst teaching N to play Dungeon Keeper on his ipad. B is in the kitchen simultaneously mincing rabbits and cooking a fry-up; and I am attempting to write some fiction.

I am hoping we might have bunny burgers for tea. The mincer on the Kenwood is more than up to the job and it seems a very sensible way to use the meat. The skins went to a friend who is tanning them to make a rabbit-skin cloak. I may have a go at it myself when we do the next batch (in four or five months).

For today, that's all I think. I'm prevaricating, again.

Saturday, 15 February 2014

dumb stuff

Most of the time I'm fine. All fine and dandy. Coping ok and dealing. And then something dumb and irrelevant hits me. I was in bits over the death of Iain M Banks for instance. Not that he's not a great writer and all but I didn't know him, never met him. 

Tonight, it's hunger games. Where Roux gets killed. 

Go figure.

Thursday, 13 February 2014

same boat

I have just found myself yelling "WOULD YOU PLEASE JUST PUT YOUR PANTS ON!" across the room to L, in the loudest voice possible that isn't actually shouting, whilst in the middle of a phone call with the nice man from Motability. With no warning.

We've all been there, yes?

It's looking good for Motability giving us extra grant to get most of the adaptations to a Renault Master van that N can ride in in her wheelchair; I was panicking that we would have to fund quite a bit of it ourselves, which would mean that we were dependent on selling the camper before we could go ahead.

Other positive things that have happened today include:

  • The Big Baby Rabbits have gone to The Rabbit Man* to be slaughtered - B has just gone to pick their components up, some of which are going in the freezer and some of which are going to be posted to a friend who wants to make a rabbit-skin cloak.
  • The Two Mrs Rabbits have new babies.
  • I have three dozen chicks in the brooder and the earlier powercut doesn't appear to have killed them with cold.
  • I am nearly ready for the Farmers' Market tomorrow and the children aren't even in bed yet.

On a less positive note, it's sleeting, but for today, that is all.

* The same chap is also The Chicken Man. He has different hats. Not literally.

Wednesday, 12 February 2014

tube feeding and guilt

I'm spending a lot of time at the moment beating myself up for things I'm not doing, so here's a nice cheerful list of things I HAVE done today.

1. Made GP appointment for N because of chest rattle.
2. Spoken to Motability car demo person.
3. Emailed Motability car-demo different person.
4. Laundry.
5. Parcel wrapping.
6. A bit of internet marketing for courses and ducklings.
7. Set four dozen hatching eggs.
8. Thrutched with chicks that are actually hatching.
9. Fed and watered birds.

I've also dressed N one and a half times because there was a nappy leak, fed her seven baked beans and two tea-spoons of minestrone soup, changed two nappies and done two tube feeds.

The tube feeding is an absolute boon, because it means that I can be cheerful about the baked beans and the soup, instead of fretting about how she needs to eat more.

I read on the facebook blended-diet-UK group this morning that on average, a tube-fed child uses £15k worth of formula PER YEAR. I am utterly, completely confounded by this. How can it cost so much? Then I reminded myself that the feed is made by a private company, which is under contract to the NHS to provide tube-feeding services. Our feed is branded by Nutrica. Nutrica also has the contract for routine tube-feeding care. So if you need your button changed (every three months-ish) or you need help changing the end of the PEG*, they are the ones you call. They should also be your first point of contact when you have an issue.

When N had her stoma** infection in September, they were the first people I called.

You can't speak to your nurse directly. You have to go through the switchboard and they are bleeped to ring you. It took two hours for her to ring me back and then another four hours for her to get here, because the area they cover is about three counties; and she was in Gloucester.

When she arrived, the perfectly nice, perfectly competent, perfectly trained nurse turned out to not be allowed to prescribe. And because of that and because she couldn't be sure that the end of the PEG was in the right place inside N, she sent us to the hospital.

My daughter was in severe discomfort, with a stoma site so infected her stomach was inflated like a drum, for nearly eight hours, because I followed procedure and rang the private company responsible for tube-feeding in the community. Oh, and also, she had no liquids in that time because the tube was blocked with infection.

It turns out that the day-to-day care of tube-fed children in the community was outsourced from the Community Nurses by the local health-care trust. They now only get involved if there are issues.

In theory, this works. In practice, the hand-over between the two teams is inefficient. Why aren't those perfectly nice, perfectly competent, perfectly trained Nutrica-nurses being employed by my NHS Trust as part of a coherent team?

In a way, we are lucky. Because N is thought to have a severely life-limiting condition, we are under the care of a special team at the hospital and we also now have open-admission to the children's ward. So, when I have any doubts or questions, I either ring the Compass Team; or I ring up the ward and take her in. Because I am not prepared to let my child be mucked around waiting for Nutrica to get off their bloated, corporate, blood-sucking backsides and get someone here quickly, who is both competent and qualified to get her acute care if she needs it, as soon as she needs it.

I'm now quite good at judging when there's an actual problem with the feeding tube. But what about those times when I've taken her in to the ward and not needed to? When I've rung the team and used up their time that someone else with a more urgent issue could have used***? I am betting that other parents in the area are doing the same thing - bypassing the outsourced team completely, because they are no use in a crisis. And in one way or another, with children like N, our lives are always in crisis. We rock, steadily, from one crisis to the next.

So that means that the local health trust has dropped a load of staff who should be on their payroll; outsourced the 'simple' bit of the care; and because the care *isn't* actually simple, put a metric fuck-ton more pressure on the Community Nurses who are left. Not to mention a metric fuck-ton of pressure on already pressured parents who are making judgement calls about the state of their child's health every day of their lives.

I am becoming The Mother From Hell and I've really stopped beating myself up about it now; because this is our life. This is the world we live in and to get N's needs met - to get any of our needs met - I need to push and push until I've go no more push left and let go of the guilt.

So, in the spirit of not feeling guilty, things I have let B do instead include; doing the school/GP/Opthalmology Appointment run, feed rabbits and quail, get in logs, book rabbits in for slaughter, feed the cat and make various phone calls.

I've also done some staring out of the window at the wind and been grateful that I'm not having to work outside or up to my udders in water. And I've talked to a Lovely Friend (tm) about planting some seeds now we're about to turn the corner to spring.

On the whole, team-work prevails.

* Two different types of tube-feeding kit. You have one or the other.
** The actual hole through her stomach wall.
*** Like the time I used a different feed without realising and it wouldn't go down by gravity because it was a bit too thick. It went in perfectly when I syringed it.

Saturday, 8 February 2014

comfort food miles

It's blowing a hoolie outside today and the rain is pretty much horizontal. To cheer us all up, B has taken himself in to the kitchen and lovingly crafted us a roast dinner followed by a pudding of home-made chocolate mousse. In wine glasses.

Get us.

The chocolate mousse experiment was triggered by the Great Chocolate Mousse Meltdown of last week, in which I sent him on a foraging mission to the Co-Op and he came back with Chocolate Souffle instead. I'm not exactly *proud* of the crying jag which that triggered. But surely, it wasn't unexpected? Mousse is mousse and souffle is souffle and never the twain shall meet. Or something.

Anyway. Moving swiftly on*. It was all delicious and we got chatting about food miles over the meal.

The most miles were from the chicken; it had started life here in the incubator, spent a few months in the garden and then a few more two miles down the road at Ma's, until it went to slaughter in Taunton, eight miles away and came back oven-ready. The potatoes were from a farm about a mile away, bought by the big bag. And the roasted carrots and squash were from my friend in the village, traded for eggs.

It was proper comfort food and when B and Leo waltzed out of the kitchen and put the food down in front of us, we all took a moment just to gaze, before we fell face down on to our plates. Even Nenna ate something - off of her new Charlie and Lola plate set, brought by the ladies from the hospice when they visited on Monday. And she asked for seconds of the chicken. The mousse didn't go down so well - she was clearly delighted at having been given a grown-up glass like the rest of us; but didn't really want to eat it. So it's back in the fridge for me, later.

I think that we forget how good preparing food for loved ones and friends can make us feel; and on the other hand, how nice it can be to be on the receiving end of a meal that someone has taken time and effort to prepare. My friends at Legglands Orchard posted on facebook this morning, apologising for the price of their marmalade. But I think that when we work out the time that goes in to making proper food, actually, we should be asking how the supermarkets are able to charge so little rather than why small producers charge so much.

I do appreciate that we don't all have time to prepare food from scratch every day; and that we don't always even have the money to spend on the ingredients. But it's an option for most of us, some of the time at least. And when we do it, or people do it for us, we should remember to value the time put in to it, both in the preparation and the eating.

*As we did at the time. Honestly.

Tuesday, 4 February 2014

fear and terror

Firstly, does anyone else think that ducks sound like Greeks? I have had this bit of Latin text from my A-Level stuck in my head for, erm, twenty-five years about 'suddenly hearing the sound of rushing feet approaching'. There's a link here to an easy-to-read version of the second book of the Aeneid and it turns out that it's the bit six paragraphs up from the bottom:
And now I was nearing the gates and seemed to have passed safely along every street, when suddenly I thought I heard the regular sound of marching feet approaching, and my father, peering through the blackness, shouted "Son! Run, my son, they're getting closer! I can see their shields flashing and the glint of bronze." 
Aeneas is carrying his father on his back, pulling a child along by the hand and his wife is following them out of the burning city. It's such vivid imagery that it's stuck with me all this time - the city in flames around them, the son weighed down by his father but unable to leave him, picking your way through twisty streets in the dark, with smoke clagging the air and not knowing whether the people you see coming are fellow fugitives or a conquering army on the rampage.

For some reason, anyway, I think of it whenever the ducks rush past the cat-flap. Their feet on the gravel make a rushing sound and it takes me right back to Dr Gill and his striped shirts and the smell of dead chalk in the Latin room.

Seguing neatly on from that, let us remain with the fear and terror.

We had a visit from a couple of members of 'our' team from the hospice yesterday. It was just for a friendly chat and catch up and it was lovely. They brought cake, for a start. We took the opportunity to ask some difficult questions, though. We talked about the 'Document of Wishes' that parents are encouraged to work through for life-limited children, which involves setting out your current wishes for worst-case scenarios - whether we'd want to give IV antibiotics and have her ventilated, for example, or simply stick to oral antibiotics and have her at home. And I asked about organ donation. I'm pleased I did. But it was a bit grim and I'm mentally stuck on the image of another child having her eyeballs and looking out of her eyes.

I think my brain is in a sufficiently melted down state to have just latched on to that as a thing. And it keeps throwing it back up at me in silent moments.

Is this the worst it can get, do you think? Is this a watershed, where we are processing these things and then we can go onward from here?

The other thing that we discussed was a holiday with a charity like 'Make A Wish' whilst Nenna is still mobile enough to make it relatively easy. We have some ideas and I'm trying to focus on that rather than the A Gift From Earth aspects of yesterday. Also on a positive note, we are test-driving a wheel-chair accessible vehicle this week, with a tail-lift, which would make our lives so much easier.

A final positive thing - I have five chicks in the incubator and more hatching. And the Mrs Rabbits are bustling about their respective cages preparing for babies next weekend.

For today, I think that's enough.