Sunday, 29 November 2015


I had an assessment by the Adult Social Care social worker last week. Despite my reservations, it seems to have been the right thing to do. We have been allocated a further eight hours per week funding for respite care and help with the house. We were both so relieved that B cried. We can use some of it for a carer to be with N so that we can do things with L; or for a carer to take me and L out (in lieu of me being unable to drive) or for someone to be with both children whilst B and I have a couple of hours to ourselves. It has come at a really good time, as L is clearly desperately needing one to one time.

In the meantime, the Continuing Health Care Panel meet on Tuesday and, please, please, please, with luck and, oooh, maybe, a modicum of organisation and even, god forbid, competence, Children's Social Care might have got their act together to get our case looked at for some overnight respite.

This is now becoming reasonably urgent as N's breathing is not what it could be. She had a Sleep Study last week, which picked up low oxygen levels a few times in the night and a general rise in CO2 as the night went on. This would account for the continuous waking. We have very mixed feelings about it. On the one hand, it's rubbish. She is being referred to Bristol to the respiratory people again, who may want further tests. On the other hand, it's bloody nice to be validated - we've both felt that the social work people have been implying that we are laying it on a bit thick with the amount she wakes up in the night - it's only really the hospice people, who have her overnight too, who have made supportive noises.

It's all a mess. The whole bloody thing is a mess. In addition, one of N's carers is leaving after Christmas. Our sparkling new Live In Carer (tm) is picking up the two nights a month that she was doing; but if the CHC Panel goes to plan on Tuesday, that still leaves us looking for people to fill in another six nights a month. I want to have a small team of people that N knows well who can provide enough flexibility to cover for illness and holidays between them. I think we are looking for three or four people - and now we only have two, one of whom can't do nights at all.

Plus, the rate we are getting from the council to pay carers is derisory - a lot of families are adding an additonal four pounds per hour to the rate themselves in order to ensure continuity of care. We might be able to use the help we get from the wonderful Team Nenna to do this - but currently that is still paying for the two overnights a month, because of the fuck ups getting the overnight care from the CHC people in place.

Last week I had three afternoons where I did nothing but lie in bed and fit and doze. L is being very difficult and we are finding it hard to work out what is 'normal' eight-year-old boundary pushing behaviour and what is a product of having a poorly sister and incapacitated mother. School are being brilliant and extremely supportive and we have lots of things in place. But keeping those strong boundaries in place for him all the time is exhausting for both of us.

This all sounds really bloody negative when I write it out. We are not moping around sobbing winsomely all the time, I promise, although I sometimes think that I do nothing but whine here any more. I look back at my earlier blog posts where I actually tried to make people laugh with my writing and I don't recognise that woman at all.

I *am* thankful for our life. I am thankful for my beautiful children and my incredible circle of friends and family (of choice and blood). I am thankful for where we live. I am thankful for the professionals that help us. I am thankful that I can read and look at pictures and drama and the countryside and see beauty in all those things.

It is just very hard to remember that sometimes.

Friday, 13 November 2015


We have been waiting since May for Barnardoes/Social Services to get their collective act together and find us the overnight care that we were promised in early May. The Continuing Healthcare Panel said we could have a sleep-in carer to do a 'waking night' for two nights a week. Barnardoes couldn't find anyone suitable, so at the end of August we all agreed that it would be best if they gave us the budget and we recruited someone ourselves. This then had to go back to the panel to be re-approved. It was too late for the paperwork to go in to the September panel - they meet once a month in the first week - and Social Services failed to get the paperwork in for both the October and November panels.

This was partly because the Social Worker who should have been dealing with it has gone off on long-term sick - practically Career Progression if you work in Social Care I think - and failed to write up the notes from the Annual Review meeting we had in the Summer Term with all of N's professionals, which was supposed to double as a Child In Need Review Meeting. They therefore had to arrange a repeat of the meeting, which took place last week.

This was quite good, in theory; because our situation has changed since the summer. Fits* etc.. And N is not coughing as easily as she was - her cough is quite weak. And she's not walking at all now - we are still waiting for Botox. B is still doing all the night waking because I am not really all that well. He is exhausted. We finally jumped and have recruited a Live In Carer** who is helping with Stuff generally. We are paying her out of various different pots of money for the different tasks that she is undertaking. If she is doing Caring stuff then we are paying her out of the Caring pot. If she is doing other stuff we are paying her out of other pots. Social Services seemed appalled at the concept in the meeting; but I really can't see why this is so difficult for them to understand, particularly since currently we are funding it all ourselves, with the help of the wonderful Team Nenna; but the shiny new Social Worker they trotted out at the review meeting last week seemed to get stuck on it. This is the person who came to chair the review without meeting any of the family, incidentally.

In summary, we are still waiting for the funding to come through. Everyone at the meeting agreed that the funding application should go through. We are now asking for two nights a week and for funding for a carer to take N for swimming/pool physio and to Colouring Club after school on a Monday with her friends.

Social Services also want me to have an assessment by Adult Social Care because they think that that might unlock some more funding for help with the things I am no longer able to do to parent effectively. Like drive. Or housework. Or lift stuff. There wasn't really any acknowledgement that the failure to put in care that they promised back in May has effectively broken my health. It's just another hoop to jump through and more people to add to the four dozen or so already involved.

I am really pissed off and disheartened by every single interaction we have with Children's Social Care. They leave me feeling judged and found wanting. And in actual fact, it is them that are failing to support us in caring effectively for N. They swan in, they pronounce loftily, and they swan out promising to help; and then you don't hear from them for six months until you are on your knees begging. At which point another shiny new person arrives, pretends to care about us, promises the earth and then fucks off again.

So there we are. I'm not on facebook so much at the moment - my head filled up with politics and I had to back off a bit as it was starting to come out of my ears. It might be a positive side effect of that that I need to blog more often than I have been doing.

I've got rid of loads of poultry and downsized the business by the way. I've been referred for CBT to try to help with the siezures and not stressing about stuff is apparently the way forward. So B is taking on most of the wrangling of Things. This is hard for both of us because I've been doing it for years and find it hard to let it go; and he finds it hard to do.

For today, that is all.

* Did I mention that I started having stress-related siezures back in August? I think I must have done. It seems a long time ago now. I've been checked out for all sorts of nasty things and basically it's stress. My brain is just unplugging for a bit becauses it can't deal with stuff. It happens when I get agitated (so a *lot* when I'm dealing with Social Services) and when I get tired (all the bloody time). I'm conscious and aware when they are going on and sometimes they last for up to ten or fifteen minutes and then I come out of it for a bit and they start again.
**Hint: if you are in the position where you are going to recruit a Live In Carer, they must NOT be described as an Au Pair even jokingly whilst you are searching for the right terminology, because Social Services flip out at the idea of funding an Au Pair. A Live In Carer is fine though.

Friday, 4 September 2015

dear NHS, you know I love you

Dear NHS,

You know I love you. You've done and continue to do, really, really well by us - not just N, but all of us. You're there when we need you, you sort us out, patch us up, send us off again. You're there in the background all the time for N and we really, really appreciate it.

But I'm cross. I'm cross and I'm frustrated. By the way this Co-Enzyme Q10 thing is dragging on.

The specialists at Great Ormond Street said that there was a chance that a daily dose would help N's development, to do with her metabolic and mitochondrial issues. Three months worth and then we review and see if anything has changed. They sent us away with enough for two weeks. Since she's had that, we have noticed a slight, but definite improvement in her speech and her ability to form sounds. We are saying 'GOOD TALKING!' more than we were previously and when she talks in her sleep there are definite words. Mum. Dad. NO! That sort of thing. We've all heard her.

However, that bottle ran out more than a month ago. And we can't get any more. The local pharmacy can order it in, no problem. It's there, all ready for her. However, no-one at any of the hospitals we are involved with seems willing, or able, to sign off another prescription for her. Our GP can't do it because it's an experimental treatment and it's not on his list. It appears that London, Bristol and Taunton are all having a Mexican stand-off about who signs - and therefore who pays.

In the meantime, we are missing N's developmental window. Such a lot of brain development happens at her age. Every week you lot faff around and don't get your ducks in a line is another week that is wasted that could potentially be helping her develop cognitively or physically.

So I'm really pleading with you, lovely, lovely NHS. PLEASE talk to each other. Please sort yourselves out. Please get your ducks in a line and will *someone* just sign the bit of paper that says she can have the medicine.

In the meantime, I'm about to talk to the Pharmacy about self-funding and get some information gathered together to talk to B about, when he comes back from the market. It costs £800 a month and the GOSH people said that three months would give us a pretty good idea of whether it was going to help or not.

I know I'm clutching at straws, but this is all I have. We need to try it.

Yours gratefully, regardless, with love.

Thursday, 3 September 2015

how to help refugees in Europe

I'm going to try to keep this updated as much as possible and put a link on the front page of the blog so it's easy to find, partially for my own reference. If there is anything that you think should be added, please leave it in comments and I will amend the post. Practical resources and links only, please.

To start with.

Currently Needed
Facebook umbrella group for Calais People-To-People Support. Find your local group here. I am not going to link to all the local ones, because they are, fantastically and wonderfully, springing up all over the country. The population of the Calais camp is made up of 90% men. Currently they have more than enough clothes and supplies for women and children and I believe storage space is limited.

Google map of local groups and resources for the above, which is maintained by Calais Action.

Really helpful list of groups set up to help across Europe - won't duplicate, it's extensive.

Help for refugees in Molyvos, Lesvos, Greece. Address to send physical donations of stuff to the island as well as a place to send cash.

Amazon Wishlist for mother-and-baby things needed for Syrian mothers in Hungary.

Books needed for the library at the Calais camp.

Donate to help the refugees in Greece via Shelterbox.

National Day of Action - Refugees Welcome Here. 12th September.

Raising funding for a Women and Children Centre at The Jungle, Calais. There are an increasing number of unaccompanied children arriving.

Crowdfunding page to raise funds to help refugees arriving in Greece.

The Independent's article 'Five practical ways to help refugees, starting today'.

Updated Thursday 3rd September.

Monday, 31 August 2015

bang up to the elephant

L has been a bit under the weather and ended up in bed with us last night about one. We had a conversation about teleportation. He thinks that now scientists have managed to teleport a single cell, the next thing will be an ant. And then maybe a shrew. And then a mouse. And a rat. And then a cat. But not a pet cat, a wild cat, because if it went wrong, the person it belonged to would be sad. He then embarked on an in depth analysis of method, at which point I fell back to sleep.

It's been a weird few weeks. Once the Co-Enzyme Q10 from Great Ormond Street had run out, we have had immense difficulty getting the prescription repeated locally. The pharmacy have actually got the stuff in for her; but so far, no-one has signed the script off so they can issue it. The GP can't do it because it's an experimental treatment. It's being passed to and fro between Musgrove and Bristol and GOSH and so the treatment is on hiatus until they sort it out. I suspect this is because it costs £800 a month, rather than any other reason.

In the meantime, I've started having funny turns and was blue-lighted to hospital with a suspected stroke three weeks ago. Not a stroke, though, which is nice. Probably not epilepsy. But I still keep having seizures where I can't move independently and my face and limbs twitch and I can't talk, every couple of days. It leaves me exhausted and with my right side very weak for quite a while afterwards. The medics are putting it down to stress. Whatever's causing it, I can't drive and it's not responsible for me to be alone with the kids. So all in all, pretty bloody tedious. Particularly since getting cross seems to trigger it and I therefore can't get a decent head of steam up to fight with B without just checking out. I'm potentially open to the idea of him fitting me with some sort of Stepford Wife Chip that he can turn on and off if I start getting irate at him. Fellow Control Freaks will sympathise, I am sure.

Other things that have happened:

  • The wheelchair broke down in the middle of Lampeter whilst we were on holiday in the second week of the school holidays. This was inconvenient and has not yet been fixed - they are waiting for parts. We have been lent one by a kind friend who didn't need his over the school holidays, but really, it shouldn't take a month to fix. 
  • The floor in N's bedroom is running with damp under the carpet. Landlords are very keen to fix it, but it's going to make the room uninhabitable for a fortnight. B has organised hospice time for her, for most of it, but it's still not wildly convenient.
  • The van has been in for repairs. We have had a Vauxhall Corsa as a courtesy car, which has meant that the electric wheelchair couldn't go anywhere with us and we were stuck with the push-along one on outings. 
  • Barnardos have still not got their act together regarding the two overnights the Continuing Health Care Board promised us at the beginning of May. We are now hoping that we can sort out supporters to sleep in ourselves and be given a budget to manage to pay them out of. 
  • Because of the Inconvenient Seizures (tm) we had to rearrange our much-anticipated Make A Wish trip to EuroDisney that was supposed to take place two weekends ago. The children were extremely good about it and we are hoping to sort it again as soon as possible. 

All in all, we're struggling a bit. B's knackered because he's doing absolutely everything, including looking after me. He took me for an acupuncture session in Taunton on Wednesday, went for a coffee and zoned out so far he forgot to come back to collect me. Not ideal. Funny in retrospect, though, particularly for people who know him well. I am looking at the Wallasey Lot as I type this.

As a distraction I am attempting to work as much Victorian idiom back in to the language as possible, starting with 'bang up to the Elephant' and 'not up to Dick'. Here. Get to work. You owe it yourself.

Also, and much more seriously, I am working on a list of organisations supporting refugees at Calais and in Hungary and Greece, that I will be putting up in a day or two.

For today, that is all.

Sunday, 19 July 2015


So here we are.

We went to Great Ormond Street again on Monday and saw three different professors, to discuss mitchondrial, metabolic and neuromuscular things. N had six lots of blood taken for different tests and an EMG, which basically involved sticking electrodes to her face and running an electric current through them. It apparently feels like pins and needles and although it was uncomfortable, she stood it like a trooper.

They think that whatever they do with her feet - splints (ongoing, uncomfortable), Botox (possible, temporary, unknown usefulness because no-one knows exactly what is causing the feet to turn), or surgery (not something we really want to consider but will if we have to) - she will no longer be walking by the age of twelve.

They have ruled out Marinesco-Sjorgen Syndrome, which gave the possibility of a normal life-span, because she does not have cataracts; so we are back to the 'life limited child with no actual prognosis' thing. For a brief moment there, we changed gear and started thinking that we might need to make provision for her after we are gone; but nope, that's not the case, as you were.

We have come home with two weeks supply of Co-enzyme Q10, and a very slight chance that a three month course might help, if the problem falls within certain parameters to do with metabolic things. Basically if she is unable to metabolise it from her diet, then sticking a load of it in to her system as a dietary supplement might help. But it's a slim chance. Three months should be long enough for us to see 'an improvement' if one is going to happen; it seems to be qualitative rather than a quantitative judgement.

We got home really late on Monday night - it's a five hour drive - and fell in to bed. And then on Tuesday I got up and started ditching chickens, on the grounds that I am not going to look back in five years and wish I had spent more time with my poultry.

Every time we have one of these rounds with the professionals, it brings everything home a little more and makes me feel bleak for a few days. I am trying to throw it off this time by rationalising my time so I have more to spend with the children; and by planning fun things for us to do. My garden is beautiful now - beautiful AND productive, with vegetables and fruit appearing. We have splashed out on a garden table and a parasol; and from tomorrow, this blog will be brought to you from the garden. The parasol is large enough to keep off the rain if necessary.

We are both sick with worry regarding the benefit cuts and NHS cuts the Tories are imposing. I have no idea how it's going to hit us yet; however, because we are self-employed, it is possible that if they put a minimum profit or turnover on to the criteria for Tax Credit eligibility, it might stuff us.

Barnardos are supposed to be putting a respite carer in for two nights a week to sleep in N's room; this was okayed in May; but so far they have been unable to recruit anyone suitable. As an alternative, we can have a Personal Health Budget; this would mean we had to find someone/some people and employ them ourselves as we do with N's supporters via the Direct Payment Scheme. It would have the advantage of being a bit more flexible; but the downside is that we'd have to manage it all ourselves. Currently our friends are still paying for someone to sleep in two nights a month via the Hundred Club that they have set up. We wouldn't be managing I don't think, if it wasn't for that. The carer who is doing it for us is wonderful; however, for personal reasons it is possible she may have to have a long career break, which will leave us without even that. It is very hard to find people for these caring roles - they are unsociable hours and the pay is rubbish.

On a positive note, the Family Fund have given us a holiday - we are spending a week in West Wales in a wheelchair accessible cottage next week. And in August, Make A Wish are sending us to Disneyland Paris. The children are already beside themselves. I am saving for a keg of gin to stick on the back of the wheelchair.

For today, that is all.

Friday, 22 May 2015

flinging the stone

I've been temporarily absent because I've been completely drained by the court case brought against us by B's parents. I'm not sure how much I want to talk about it, really, but I think I have to say *something*, because the whole debacle has been such a huge thing weighing us down for so long. Not having it draining a large chunk of our energy any more is going to make an enormous difference to our lives.

In essence, B's parents have been trying to push us around for our entire married life - that's fifteen years, give or take. It got a lot worse after the children were born. Before then we had just gone with the flow because it was easier to do what they wanted than make a fuss. The year L was small and I was sickly-pregnant with N and had post-natal depression and Pa died and various friends died and we went bankrupt and lost the business and our house, things came to head. Ridiculously, over arrangements for L's naming ceremony.

After that, B decided he didn't want them in our lives any more and I pressured him to keep in contact for the sake of the children. Retrospectively, it was the wrong decision.

However, things trundled along with us trying to bash out some sort of relationship that involved them seeing the children and not having enough input in to our lives to think they could take over again. Sometimes it was better and sometimes it was worse, I think depending on how we were feeling and how aggressively they behaved. All the time, we have been thinking 'What is best for children? What is best for the children?' and all along our answer to ourselves has been 'Some sort of limited contact so they can get to know their grandparents, where the grandparents can't bully them as they have been doing us, and where we, the adults, have as little to do with them as possible'. Latterly, B has not even been able to speak to them when we have met to hand the children off, he has been so distressed.

As the facilitator, I think I have been seen by them as the person standing between them and their son and grandchildren and a lot of the bile directed at me has been because of that. I don't think that excuses it; but it is a reason. What is inexcusable is the way his parents have 'gaslighted' B's cousins and aunt and convinced them that their actions are justifiable. 'Gaslighting'. It's a thing. Look it up. Also look up Narcissistic Personality Disorder because that is the only thing I can think of that would explain my mother in law's behaviour.

It has been an utterly grim few years from 2008, when they started threatening us with social services, legal action and, bizarrely, removing themselves completely from the children's lives, often simultaneously.

Now, however, we have a court order that dictates how often they can see the children and how they communicate with each other. The court thinks it's reasonable, the solicitors think it's reasonable and most importantly, CAFCASS think it's reasonable - they are the body that looks out for the well being of the children in cases like this. It is extremely validating that they agreed that what we have, all along, been offering, actually IS reasonable. There is flexibility built in to the order for more contact in the future if seeing them is positive for the children. Because it is written out, it means they can't muck us about. They can't change their minds at the last minute, they can't suddenly say they aren't coming because the arrangements we have made don't give them enough time with L; they can't use their interactions with the children to try to manipulate and bully B.

In the end, at the court on Tuesday, we reached an agreement between the two parties, rather than forcing the court to decide in a Contested Hearing. So both parties, us and them, have agreed that what we negotiated was okay; and the judge looked it over and essentially rubber stamped it. There is a lot of stuff in the 'Preamble' - the bit at the beginning that sets out the expectations between the parties for the contact to go smoothly - about them backing off and leaving us alone, not contacting our friends and families, not involving L in adult affairs; and not staying in our village. They *really* didn't want the thing about not staying in the village in there in writing, which was bizarre; I guess staying close by gives them an opportunity to physically intimidate us. However, we finally managed to get them to acknowledge we do not want them to come to the village unless they are dropping or collecting the children. I have no idea whether they will stick to it.

It is a really strange feeling to feel safe.

B and I were discussing this yesterday. It's really, really strange to acknowledge that they have been emotionally abusing the two of us - and particularly B - for years. Over the last couple of weeks, various professionals, legal and psychological, have validated that for him. He says he's in a strange place about it and he might want to use this space to write about it himself.

For me, I am relieved it's over. Positive things *have* come out of this all. I didn't realise quite how many friends we have - I suppose you don't until something like this happens. We have so many, many people who have been around us through all of this in all sorts of different ways and offered us support of all different kinds. And through it all we have been living in Holland and dealing with N's deterioration; and friends have been supporting us with that as well.

We want to have a life now. To the best of our ability, we want to grab it with both hands, use all this space - time, mental and emotional energy, physical energy - that has been sucked in to this abusive black hole - and get on and have some fun.

Are you coming with us?

Friday, 24 April 2015

stuck in the throat

Today is Undiagnosed Children's Day. Every year, six thousand children are born in the UK with conditions that are undiagnosed. Nenna is one of them.

Yesterday, the Speech and Language Therapist phoned to say that she had observed Nenna eating at school and that she thought the time had come to say that it wasn't really safe for her to eat orally any more. If we want to keep giving her things, smooth and thick textures and quaver-type crisps that melt in her mouth will be best. But she's not swallowing well and her cough-reflex is not reliable, so the likelihood of her aspirating is increasing.

This is an unreasonably huge milestone for us, a really big signpost that says 'yes, your daughter is deterioring'. Or, 'progressing' as the professionals call it.

Obviously, because she is undiagnosed, we have no idea how long this stage will last, whether it will stabilise, whether she will continue to deteriorate so that she can no longer deal with her own secretions and we will have to start suctioning her.

Thankfully she has her button and the blended diet we are feeding her is working well. Nutritionally this will make no difference to her. Socially however, it is huge, for all of us.

For today, that is all. I really can't write any more.

Tuesday, 3 March 2015

little mermaids

We have a day off today. No appointments, no phone calls to make, nothing. Lots of paperwork and housekeeping to catch up on and the animals to do, obviously; but nowhere to be, no-one to make coffee for when they come to the house to see us or N, nothing.

It feels a bit odd.

We are so used to going like the clappers to fit everything in that when we have time to catch a breath it feels almost unreal, like a dream. B and I are both sitting on the sofa listening to Lauren Lavern on Radio 6. If there was a roast dinner on, it would be like Sunday. Oh. But wait! Because we have the time, we DO have a roast dinner on!

We have taken a bit of a grip on the catering because of a bad patch a few weeks ago where we were both too tired to cook. We have meal plans, a freezer full of batch cooking and I have embraced my innate middle-classness and am doing a fortnightly Waitrose delivery online for the basiscs. Today's meal plan involves two chickens in the slow cooker and roasted veg in the oven later. Tomorrow it will be chicken stir fry. Then chicken and vegetable soup in the slow cooker.

All these home-cooked meals get blended up in the blender with extra liquid and fed to N through her button. Since she has been having a lot of 'real' food down the tube instead of being fed solely on the proprietary high calorie 'milk feed' supplied by the NHS, her general heath and wellbeing has improved no end. When we started feeding her like this, it was unusual and the dieticians and nurses didn't really have enough information about it to be okay with it. A lot of families we know have had to fight really hard with their professionals to get them on side with it. If children go in to hospital, they are often not allowed to be fed like this, but have to swap to the 'milk'. However, we have been very lucky and had the tentative support of our professionals right from the start. N is putting on weight, is generally healthy, is *growing*! and it seems like a success. When we are out and about or she is at school, she gets a 'milk feed'. And when we are at home, she gets what the rest of us are eating, squizzed up. We put a plate of food in front of her as we do with L, she takes a few mouthfuls, mushes them round her mouth and either swallows or spits them out. And then she gets the rest of it by tube.

In other news, the casts have come off. They have done all they can with them to get her feet in a better position. Some mornings we can get her orthopaedic Challico boots on her - to hold her foot in a good stretch - and some mornings we can't because it is too painful. She can't stand without the boots. We are going back to physio and to orthotics to talk about AFO splints and possibly an operation to release the tendons along the inside of the foot. She should be in the boots and on her feet for at least ten minutes twice a day to give her the stretch. The additional plus of the casts being off means that she can go in the bath rather than having to shower with clingfilm wrapped round her feet. She has been asking for a bath every single night and doing lots of spashing. Apparently she and I are going to go swimming dressed as mermaids one day soon. I am told.

Her signing is coming along apace. The PIMS Team have sorted out some software called ProLoQuo for her iPad which allows her to construct sentences and vocalise. We can put in pictures of people and places and activities that are specific to her and they become part of the software. It's very powerful and helpful to her and she is fascinated by it. The only (typical) glitch is that her iPad speakers are on the blink and I am spending some of my time today seeing if I can find charity funding for another one.

We are plodding along. We are going to court tomorrow to face B's parents over the amount of time they want to spend with the children versus the actual amount of physical time we have to deal with them in our lives in any way. They have not accepted the offer we have had on the table for the last two years and are pushing for more. We are stressed and angry and B is devastated by the whole debacle.

We planted seeds at the weekend. There are chicks cheeping in the incubator. I have been asked to contribute information about Barnevelders to a smallholding magazine. I am going to dress up as a mermaid with my funny and beautiful daughter. We are going on holiday to Wales in the summer. Make A Wish are sending us to Disneyland. L can spell 'February' and understands what a Noble Gas is. B has finally trimmed his nasal hair. It is sunny outside. Last Wednesday, Ma unexpectedly brought us a cottage pie and a lasagne and stayed to hear L read. L says that all we need as a family is love. Our friends love us. We love our friends.

For today that is all.

Thursday, 12 February 2015

family of choice

I've been quiet because I have had such a lot on. I've felt overwhelmed by all the appointments that suddenly became due once the New Year got underway. Paediatric consultant, advocate, social services, OT to look at beds and hoists, chap to look at the joists and assess for the suitability of a ceiling hoist, OT to look at bathroom changes, physio, speech and language, weekly appointment for casting N's feet, chaps to put some raised beds in to the garden for N to plant stuff in when spring gets here, chats with the GP, school, the counselling support service, the dietician; community nurses asked for a SATS machine loan for Ma whilst we're away, bloods being taken and MRIs being arranged for further tests, genetics spoken to, the Family Fund spoken to about a family holiday, the quarterly nappy order changed and triggered; and a school uniform grant arranged.

It between it all we have been fielding solicitor interaction to try and arrange for the children to see their grandparents at half term, move the family court date so that it doesn't clash with hip x-rays in Bristol; and trying to give a modicum of support to friends who have lost a close friend of theirs. Oh and I've been trying to get the incubator loaded and the hatching season under-way to get the business plunged in to the busy/profitable season.

A couple of weeks ago things came to a head and we were both so tired we had to ask for help. An experienced-with-special-kids friend came to stay for four nights and slept in with N, then we had our regular carer come in for one night; and this week the children have gone to Ma and Sister Natalie whilst B and I retreat to Wales to sleep. We are currently sat in Caffe Vista in Tenby, sampling their most excellent gluten free brownies and chamomile tea and wifi.

That's nearly two weeks of night-time support and we are still knackered. I'm torn between wanting to go back and plunge back in to family life - B is taking the children to Peppa Pig World this weekend, god-of-sausages-protect him - and wanting to run away and not deal with any of it.

This is not the life I would have chosen, but it is the life that I have.

Social services and the Paediatric consultant are, finally, finally, finally, going to try to persuade the Health Board to put some overnight respite in place for us. Ma and Sister Natalie are not really able to cope. It is only because B and I are literally at breaking point that we have gone ahead with this time away. I don't known if we will be able to do it again. The Compass Team have lent Ma a SATS alarm for the week so that she doesn't feel she has to get up every hour to check on N in the night, which is what she ended up doing last time she stayed with her. We are reaching the point that N isn't going to be able to stay anywhere that doesn't have hoisting capability because she now weighs between seventeen and eighteen kilos and is too big to safely lift. This also makes taking her out and about difficult because very few cafes and shops have disabled toilets with adult changing beds, let alone a hoist.

This makes me angry.

Everything makes me angry at the moment. I feel like I am filled with this immense electrical charge that is waiting to discharge with a huge crack. And when it cracks, when I crack, I am scared that I won't be able to put myself back together again. I cried properly this morning for the first time for months. I cried because Ma told me that I needed to spend more time with L, helping him with his homework.

I feel like I am failing everyone, but mostly, I feel like I am failing L. He deserves the normal things in life. He deserves to have a mother who helps him with his spellings. Instead he has a mother who spends all her waking time on the phone or emailing people about his sister, or caring for his sister. And the rest of her time flat on her back in bed because she's run out of steam. (Oh, did I mention that the fibromyalgia is worse in cold weather, when you are under stress?)

Anyway. Among all of this I want to give a nod to the concept of 'family of choice'. Your real family may have serious, serious limitations - god knows ours does - but in place of them, or as an addition to them, if you are really lucky, is your Family Of Choice. The friends that you choose to invite in to your life that are as close as, or closer than, your blood family. The people you can ring up or text after a month of radio silence and rant at down the phone. The people you give keys to your house to. The people who you are comfortable having walk in without knocking, whether you have pants on or not. The people you are happy leaving your kids with without any instructions or warnings. The people who hold you, physically or emotionally, who give you words or silence or freezer-meals when you need them and who you give those all back to in turn.

It's our family of choice that's keeping us going at the moment - giving support to various people as well as receiving it. Seeing other people forge through their lives one step at a time, seeing how desperately hard it is for them and how they are doing it with grace and with dignity somehow makes it easier for me to do the same.

I think it's the Anglo Saxons that saw their spiritual world as a web - everyone connected to everyone else, somehow. I am at the centre of my web. My friends are at the centre of theirs. All our webs overlap. You can pull and stretch the web but you can't break it because all the interlocking threads that make it up are flexible and keep it strong.

That's what keeps it knitted together and holds us all in place when we feel like we are falling.

We give what we can and we take what we need. We give love and we accept love.

That, to me, is what family of choice is all about.

Friday, 9 January 2015

beetling on

Well that's that then. Farewell 2014. You were quite a challenge, really.

After all the trauma and drama, we had a lovely Christmas. Despite the awful situation with B's family, we discovered that actually, Family Of Choice is what counts. We discovered that we have a shed load of friends who are there when it matters.

And they were there. And it did count, massively. We received parcels of presents for the children, and cake (and gin). Some with signed cards, some anonymously. Ma and Sister Natalie cooked Christmas Dinner and arrived on the doorstep with it ready to serve after they had been to church. We received messages of love via facebook, by email and by card.

I did cry, but it was good crying.

Obviously for B, this has been much harder than it has for me. What sort of parent takes their child to court for spurious reasons? The sense of rejection and loss must still be immense for him, even though this has been rumbling on all these years. However, I also know that knowing we have this strong, safe network of friends who are there for us has made a difference to him as well; although he's not so verbal about it as I am.

L got a Transformers set and N got a wooden marble run from us. They spent the whole day playing with them. Best Present (TM) was 'Beetle', bought for £1.50 in a charity shop in November. N turns out to be cut-throat at it.

We then went to the hospice for a few days at New Year. It was restful and quiet. We shared space with a family who lost their little girl on Christmas Day. The baby was in the Chapel Of Rest and it was a strange feeling. Not bad. But strange. An extension of the 'being held by people who care' thing that we were experiencing from our friends; but this time it was not us being held, we were able to do some of the holding - not in any obvious way, the family were very much surrounded and protected by the hospice staff - but we were there, sharing that loving space.

I couldn't help but think 'one day this will be us'. Which took the edge off the New Year a bit, to be honest. But it's the truth and we have to live with that.

So now. Back to school, back to routine, back to work. Getting the incubator going, setting eggs for hatching, considering what stock to keep, what to downsize further. Whether to stop breeding bantams, whether to stop breeding at all.

We have another session with Social Services next week to try to convince them that we need them to support us with overnight respite. We've got an Advocate coming along. I'm sick of it all to be honest. They don't care about us, we're just an output on their balance sheet and if I could wave a magic wand and put them back in Pandora's Box and manage somehow on our own, I'd do that. They are more trouble than they are worth - the amount of time and energy I spend putting in to interacting with them versus what we get back is a waste.

I'm reading up on the legal obligations under Disabled Children/Carers legislation so that I know what we are entitled to. Apparently they have to provide us with 'eligibility criteria' that they assess need against if we ask for it. We asked earlier this week but so far no response. I am hoping the Advocate will have all this at his fingertips.

I am cleaning the house. No. Really. Also fixing the incubator and doing some writing.

For today, that is all.