Monday, 28 April 2014

for people who are donating to the childrens' hospice

My name is Ally and my husband, B, and I, have two children, L, who is six, and N, who is five. N has a non-specific degenerative condition that means that she will gradually outgrow her muscle strength and her motor skills will deteriorate. Because she does not have a specific diagnosis, we have no firm idea of how she will progress.

Currently, she walks with splints and a standing frame, has an electric wheelchair that she is using more and more; and is fed largely by gastrostomy tube, directly to her stomach. Her swallow reflex is very poor and she is prone to both choking and to respiratory illness. She can't be left unattended in case her airways need clearing or she falls. She understands much of what is said to her, but cannot really speak. She communicates largely in sign, which we are learning together as a family.

Despite all this, she is a bright, cheerful little girl, who goes to a 'normal' school and who is a joy to be around.

Our life since N arrived with us has not been the one that we planned to have. We waited a long time to have children. I saw myself reading to them, gardening with them, snuggling on the sofa, day trips to the beach, all the usual things you expect to do as a family. We do do those things; but it is so much harder. If you have children of your own, you will be able to look back and remember the first six weeks of your baby's life, when you travelled everywhere with what seemed like a cart full of stuff, constantly checked their breathing in the night, woke to do night feeds, could do nothing, really, but look after this tiny scrap that couldn't communicate it's needs to you properly.

It's like that for us all the time. And therefore, our base-level of function is exhaustion.

When Sue asked me to write about what the Children's Hospice means to us, a family, I didn't really have a starting point. But I am writing this in our room at Little Bridge House, in my pyjamas at six thirty in the evening. Someone else is feeding N her supper via her gastrostomy. Someone else is looking after L for another half hour until we can coax him in to bed. There are clean towels on the bed in front of me. Lorraine, the chef this evening, greeted me with open arms when we arrived and asked me whether N was still eating as well as she had been when we last visited at the end of February.

N's room has 'Hi N' in patchwork letters on the pinboard. I know that the night staff will turn her if she needs it when she wakes in the night, so I don't have to sleep with one ear open. I will be able to sleep for as long as I can in the morning and not worry about getting up to feed her. I can interact with other people here or not as I choose. I know the Sibling Team will look after Leo all day and that the carers assigned to N will both entertain her and look to her physical needs. The duty doctor will check her over a couple of times this week and we can discuss ideas we may have to improve her quality of life.

My husband and I will be able to gradually wind down. To have a meal made for us rather than eating standing up in the kitchen whilst we blend N's food to put it down her tube. To have a sneaky go in the hot pool after the children are in bed. To go and visit friends locally one evening because one of the office staff is kind enough to volunteer to babysit Leo for us.

Unless you have lived this life, you will have no idea what sheer relief the Children's Hospices provide. We literally wouldn't be able to continue to manage, without the support we get here. When we first started coming, we could probably have been described as a family in crisis. We were both exhausted and had serious doubts about our ability to continue to care for our daughter if her condition progressed as it is suggested it will. Coming every eight weeks for four nights is a life-line for us. We count the days down until our next visit is due. And we know that if we do have a crisis – for example, N was hospitalised with pneumonia at half term – they will do their best to accommodate us should we need that.

On behalf of all of the families who are lucky enough to have a place here, we would like to thank you.

(I am running in the Rainbow Run at Exeter in June, in aid of the hospice. My donations page is here -

Wednesday, 23 April 2014

easter bunnies

Mostly, this week, I seem to have been catching rabbits.

This crop of babies are now about twelve weeks old and need more space than they had in the hutches, so on Saturday morning we made a couple of pens around the two large animal houses we had spare, separated the girls from the boys and voilĂ , instant Easter Bunnies.

Except it didn't work quite like that.

I pulled the curtains on Sunday morning and the garden was full of copulating rabbits. It looked like a terrorist attack had happened at a magician's convention. It turns out that a) they ARE old enough at twelve weeks and b) We SHOULD have pinned that wire down a bit more.

I'm about to phone the wood yard and see if they are going to deliver this Friday, because having some *actual real fencing panels* would go a long way towards lessening permeability.

Over the school holidays we have been out and about with the children to various places, including taking L and a friend to the Fleet Air Arm at Yeovilton (B: "I wish I'd remembered the fucking hip flask!") and to 'Animal Farm' near Weston (Me: "I feel short-changed, where are the talking pigs?").

N has spent three days on a Whizz Kids wheelchair skills course and now has both a certificate pinned on the wall and an appointment at the wheelchair clinic at Whitsun for a 'grown-up' chair that she can travel in. This will make our lives a great deal easier because we will be combining two bits of kit - the push-along wheelchair and her teeny-tiny Bugzi electric chair - in to one, that she can travel in. I am hoping that it will all be sorted by the time Motobility deliver our Renault Master (did I mention the tail-lift?) and it will be a brave new start all round.

I've finally found my missing seeds - in the bag on N's walker - and this afternoon I am going to plant squashes. And catch some more rabbits, by the look of it - one's just hopped past the climbing frame.

Sunday, 6 April 2014

I am not a Christian

We went away for the weekend this weekend and had a lovely time at a house-warming party thrown by some friends. Driving home, everyone in the car asleep except me, I started thinking about everything we have going on and how the most difficult thing for me is acceptance. I got to thinking about Palm Sunday in the context of that - Jesus riding in to Jerusalem on the donkey, knowing what was going to happen to him during the following week. Going from the triumph of his entry to the city as the King of the Jews through the Last Supper and his betrayal in the garden of Gethsemane.

He knew that it was going to happen and he accepted it for what it was and met it as best he could.

I don't think that I'm a Christian; but I do sometimes find myself drawn to the comforting ritual of the church services of my growing up. 'My' church is one of the few in the country that still use the Book of Common Prayer and although I haven't attended for years I am starting to feel that I might want to make a regular habit of it again. Easter is the most important time of the Christian year and you are supposed to go to church then (and at Christmas) even if you don't go at any other time. I suppose that's why I was mulling all this over.

I am not a Christian. I have trouble with some of the most basic concepts of the faith, particularly Paul's attitude towards women. I am not a Christian, but I do admire the Christ that the Bible tells us about. I think that he was a good man, who walked the path that his conscience led him down.

He changed what he could and he accepted what he couldn't. Even though he was afraid of where his path led him, he still followed it. He faced his fears and he went through them and out the other side; and he believed so strongly in what he was doing that he was prepared to die for it. I envy that calmness and I wonder if going back to church and immersing myself in the ritual and the knowledge that millions of people find strength through it, will help me to find it for myself.

I am not a Christian. But the uncertainties we are living with and the fact that recently, a series of dynamic and galvanising women clergy have touched my life one after the other, have made me re-examine whether I could be.

Wednesday, 2 April 2014


I feel simultaneously stretched thin and compressed.

We've just spent an hour with N's Paediatric Consultant and Community Nurse in our living room, going through the 'document of wishes' that we roughed out a few weeks ago. This session was much more in depth and addressed things like whether we would want N to be ventilated if the reason she wasn't breathing was the progression of her neurological condition rather than an acute chest infection.

Apparently we are now describing her condition as 'Congenital Centronuclear Myopathy and Progressive Cerebellar Syndrome'.

I really don't know what difference that makes, do you? The end result is going to be the same. And currently, I seem to be too small for my skin and I can't be still or move about; and my eyes are burning and my teeth are clenched and I am just horribly, awfully stuck.

I can't get past this, right now. I know I will. I'm going to have to.

But right now, I'm stuck.

Tuesday, 1 April 2014

mostly ranting

It is a truth universally acknowledged that the moment you decide you are going to take a quiet ten minutes and candle your eggs, you notice that the cat has crapped in the corner by the incubator.


I'm on fire this week - a bit of sunshine and the whole world looks better. We've got the move to N's new school sorted and she's starting after Easter. They seem very clued up and are more experienced with children with complex needs. It seems to me that facilitating her doing stuff like swapping between the walker and her Bugzi when she is tired won't be an issue, as it is currently.

I am spitting tacks because neither of her class teachers made the Transition Meeting with the new class teacher and SENCO that was arranged last week. We only found out about it via the new school so it's entirely possible her teachers weren't informed either; and only her Learning Support Assistant was able to attend along with the existing SENCO, who had arranged the meeting. Her LSA is great - so great she's been recruited by the local special school - and has a really good grasp of N's achievement and needs; but still. I feel really let down by the 'old' school and I am hoping that the fact we have removed N isn't going to impact on the way that they treat L.

I keep telling myself that it won't, that they are more professional than that; but when it comes down to it, I don't think that some members of staff are. For example, the thing that ticked me off the most was that during the meeting was about the Bugzi. We have wanted it in school from when she got it back in the autumn, as has her physiotherapist. School have most emphatically not facilitated it. First it was because there was no room to put it over-night; so we thrashed out a place for it to live. Then it was because they weren't sure that she could use it safely - this was flagged at a meeting in January. So we booked her on a Whizz Kidz course, (which is happening next week) and the Physical Impairment Support team said that in the meantime, school could arrange a little obstacle course for her and that would be fine.

However, in the meeting last week, the SENCO said that the Bugzi 'hasn't been brought in to school for some reason', clearly putting the ball back in our court.

I'm tanting, can you tell?

If something can't be facilitated for a reason, tell me the reason. That's fine. If something's not been facilitated because you are crap at your job, please don't try to turn that back on us. Because we are doing our damnedest, in extremely difficult and draining circumstances, to provide our children with a life that is as 'normal' as can be. If four hours a week in post isn't enough to do the job properly, then that needs to be flagged, because this is my child's physical, emotional and intellectual well-being that you are mucking around with to bolster your ego.

Anyway. Having got that off my chest, in my calm, lucid and rational moments, my mantra is 'focus on the outcomes, focus on the outcomes'. That's all that matters.

I have fed my concerns back to N's social worker, because I reckon she'll be more tactful than I am about flagging them up.

It's sunny. I have an incubator to fill.