We Are Family

My mum came to stay this weekend. We always talk a lot about Small. She has, naturally, been with me all the way along our journey of discovery and fear, but I worry that we lost her sometime around acceptance. I worry that she sees Small too much as not quite a person, too much as a project to be managed… too much as a little boy who has stopped me (and Big, and the OH) living the life we were supposed to have.

I am so past this feeling, I think, for two reasons. One is, without doubt, respite. If we did not have this window in our lives this post would be different. But, every fortnight, off Small will go with his amazing carer, Pam (she’s not called Pam, but she could have been) and he has the most delightful two days with her, her husband and her two grown up boys. They all very clearly have a lot of affection for Small and he very clearly returns that. It’s a beautiful bond. In return our lives slow down. We’re able to sit, read books, take Big out to places that would be awkward with Small and we get to make meals that take longer than 20 minutes to prepare*. So when he returns, we have missed him, and I do miss him, and we’re ready to change gears again, refreshed, renewed.

But the second reason is bigger, more holistic than this. We are a family these three people and I and we do not make life worse for each other. We make life different. Imagine, if you will, that Small is not Small but Small is a regular boy, he’s 7 and looking like he’ll be a really good rugby player. We spend every Saturday watching him play the under 9’s at the local club, we take him to rugby camp over the holidays, we spend inordinate amounts of time going up and down the motorway as he gets older and tries out for semi-professional clubs. This amount of time and dedication devoted to one of our children would be oh-so-reasonable and not questioned. And yet, we spend time in clinics, out-patients, that are not close to where we live but 30, 100 miles away trying to find an answer to Small’s undiagnosed condition and, I can see it, people think this must make for a very hard life. It is merely different. It’s not one I’d have chosen (and, to be clear, I would never choose a freezing cold rugby field either!) but this is our life and we are happy to live it. And because it is something that has grown organically, not just happened overnight, this is How Life Is. And that’s ok with us.

One day, I’m hopeful, everyone else will get that too.

* See: http://premmeditations.wordpress.com/2013/10/16/this-life/

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Ssh, that Liebster Award

In the past fews months two very very lovely and wonderful bloggers have nominated me for a Liebster Award, (Me, little me!), the lovely http://oneoffordinary.wordpress.com/ and the equally wonderful Mr Boo’s Mum at http://premmeditations.wordpress.com/. I’ve enjoyed both these blogs and empathised with their journeys.

To repay this compliment I have been woefully tardy at writing my Liebster post. I can only apologise. Two things prevented me. Time. Time to think in a different way, not about Small, but about me and, also, that you have to nominate other blogs for the Award. This is a wonderful idea but it does mean you have to know more blogs! And it’s only now, 6 months in, that I just about do.

I thought I’d amalgamate the questions. One Off Ordinary gave me an intimidating 10, so, I’m going to cherry pick two and add them to Premmeditations’ 3. I hope that’s ok…

So, to answer some questions:
What made you start blogging?
Actually, it’s more like ‘Who’. I sent a piece of writing to someone who said ‘Have you thought about blogging?’ and I said… no, I laughed and said, ‘No, where would I find the time?’. This idea niggled away at me for some time, till I noodled at wordpress for half an hour, put together the most low tech blog I’ve ever seen and have never looked back. As many many before me have said it is oh so cathartic.

What is your faourite book, film and album?
Tough one. My favourite book changes all the time. So I’m going to sidestep slightly to… I’m currently reading Maggie O’Farrells’s latest one ‘Instructions for a Heatwave’. It’s brilliant, and unlike some books that I’ve read recently that have made me go to sleep (Tove Jansson’s The Summer Book for one, a delightful read, but soporific), I haven’t wanted to put it down. This hasn’t done my sleep any good and, dammit, I can’t blame Small when I’m tired in the morning. O’Farrell has a wonderful style and a great back catalogue if you’re coming across her for the first time. Favourite film, The Shawshank Redemption. Every Time. I love it, it’s just inspirational, uplifing. And album… Recently I’ve been going back to Amy Winehouse and Ed Sheeran. I am soooo down with the kids, me. If Big had her way it would be Jessie J and Lady Ga Ga all the way. Thankfully, she doesn’t.

How do you keep your head while all around are losing theirs?

Ha. A good friend’s mother has a very useful phrase, ‘This too shall pass’. So when things aren’t going my way (and this ranges from ‘Small is ruining my life’ *sob*, all the way to ‘Why are there no pens in this house…!’) this is a phrase I hang on to. Because all these moments do pass and other, better, fluffier, ones come along.

What do you wish you could know about your future?
I had quite a long think about this one and had almost decided on ‘Nothing’, when I remembered the great big void at the back of our house that we’ve been working on, off and on, for the past two years. I’d like to know when our bloomin’ extension will be finished, and will I like it?

What do you wish you could tell yourself of 10 years ago?
Not to have children and then get married. It felt like the right thing to do then, but in retrospect it was the wrong way round. We’d gone from two income, no kids, with decent disposable income down to large mortgage and Big. In my head I’d hoped for the honeymoon of a lifetime to the Maldives whereas all we managed was two days on the Isle of Wight whilst my mum babysat Big. Don’t get me wrong, we had a wonderful time, but still, I could have been sat by a pool with nice people bringing me drinks all day. Somewhere hot. And not being worried the phone would ring to bring me home early like it did when she was 9 months old.

It’s at this point I get to ask the questions and nominate my 3 blogs…
My questions:
1) What would be your dream job and why?
2) What has surprised you most about being a parent?
3) The house is burning down. Which 3 things, besides your family, do you rescue on the way out?

The blogs:
http://www.eehbahmum.com/
I love this blog, it’s funny, and honest, about life with children. Mainly, it’s funny.

http://www.stephstwogirls.blogspot.co.uk/
I’m a bit worried Steph may have done one already, but this is a great blog about Steph and her two girls, one of whom has autism.

http://areyoukiddingney.wordpress.com/
This was the first blog I ever linked up to. When you start out telling the world you have a kid with additional needs, you don’t always want to read other people’s stories just yet. This blog showed me that actually you did. It’s the life of the D’s, which focuses on RD, the eldest child, with undiagnosed disabilities, a gorgeous character and glasses I want to steal.

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Some very grown up conversations…

When I was about 6 or 7 years old I had a pathological fear of dying. I don’t know if it was the idea of my not being there anymore, simply ceasing to exist or that the world would have the gall to go on living, to simply keep turning without me, that upset and frightened me more.

As I’ve got older, this fear has, in a cliched kind of way, dissipated somewhat. People I love have died and the world has kept on turning, but these people are not forgotten, they are still discussed and talked about fondly (‘Do you remember how they….?’, ‘I only do this because Granny used to…’, ‘Goodness, you really do sound like her when you say that…’) But it binds us all together, more than I could have comprehended when I was younger, and there is a great deal of comfort in that for us all I think.

When Big was born the OH and I finally made Wills. We hadn’t done until then because, well you don’t do you? but with the responsibility of having children came the need to get our house in order. So the lovely Wills man came and talked us through what felt like a ridiculous raft of questions – How would our meagre estate be split should we die? Did we want it all to go to Big or did we actually want anyone else to get anything, and what about if all 3 of us died together? We answered these as well as we could but we were 30-something, unable to comprehend any of this Ever Actually Happening.

When Small was born, we simply re-did them to split everything between them.

But now… Small has complicated things. We cannot leave him money, because he will not know what to do with it and any assets he has will affect any benefits he’s entitled to. So we need to set him up a Trust. He will need lifelong care and he will need other people to make sure he is looked after. And by looked after I mean as well as he would have been were he still at home. I have just about come to terms with the fact that at some point – way down the line – Small will need to go into residential care. He will get too big and heavy and we will get too frail to meet his needs. But when I went to discuss re-drafting our Wills with setting up a trust in mind a new question arose. What if you were to die tomorrow?

I dissolved.

For the simple answer is… We cannot.

When it was just Big, we said my brother could look after her. And he could have and still would. But they live 120 miles from here and they cannot have Small. They love him I know, but he is too much for us to give to anyone. He has so many many needs (and so much equipment). Our siblings have families of their own and lives, and jobs, and our parents are too old. Small would have to go into care because that way he would be placed with a family who know what they are taking on from the start and who would have housing which would be accessible for him. Logically he would stay here as all his care is here.

Oh God, my boy into care? My little boy? No…

But then what of Big? Send her half way across the country away from her brother? Ask a friend here to take her in so they can be near each other and give them some continuity? These are all such big but necessary conversations. And we are beginning to have them. For how much worse would it be for the worst to happen and for us not to have made a plan? How much would we have let our children down then? But it will take many months for us to not only find an answer, but to come to terms with an answer.

In the meantime OH and I must act like the US President/ Vice President, and never ever travel together…

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Mencap have a great guide to Wills here:
http://www.mencap.org.uk/what-we-do/wills-and-trusts

Cerebra offer a £350 voucher towards the cost of seeing a solictor to set up a Will/ Trust for parents of children with neurological disorders here:
http://www.cerebra.org.uk/english/gethelp/willsandtrusts/Pages/default.aspx

… and what should I call you?

I recently came across the most amazing blog by a doctor who has ended up on the other side of the bed – she is now the patient. As a result of first hand experience she has started a very worthwhile campaign called #hellomynameis, which is to encourage all professionals, when they meet patients, to remember to introduce themselves properly. To take a moment to be human before they launch into symptoms and diagnoses. You can read all about it, and her story, here:

http://drkategranger.wordpress.com/

This got me thinking about the respondents, the patients, who are sat in their compromised position wishing they were anywhere else. Nothing personal, but no one likes a hospital. They are not in their usual clothes, but in a hospital gown, not in their comfort zone of home, but an alien environment of hospital, smelling of sterility, run by women and men in colour coded coats. How often have you been asked what you would like to be called?

Here’s what happens when I bring in Small. ‘So, what brings you here today, Mum?’… ‘Now, Mum, were we waiting on some results today?’…. ‘So, Mum, how’s Small getting on?’
Hang on, is your mother here in the room too?? Oh. Wait. You mean me.

Technically, I can’t argue with this. He’s my boy and I am his (and Big’s) mother. I am indeed his mum. On so many levels though, this shorthand term used to mean ‘You, the grown up’, is not the one I wish you to use when I bring my child to you in the hope of answers.

By reducing me to ‘mum’, you take away my identity; you push me to the bottom of the pile. It says, ‘I just can’t be bothered to remember your name as well’. I suspect this isn’t deliberate, more a way of getting around that awkward ‘Do I call you Mrs… or your first name….?’ or that you just have a terrible memory for names. I have to tell you though, it’s so annoying, borderline rude. On every one of Small’s hospital visits I meet nurses, consultants, registrars … and I remember their names. When they introduce themselves I tell them my name in return. They still call me ‘Mum’.

I understand that it’s easy, that the number of people you meet every day is huge. But you remember Small’s name, why not mine as well? If it was me coming in by myself to tell you about my aching back, you wouldn’t call me mum, would you? No, you’d take two seconds to look at my notes beforehand and call me by my appropriate name. You’d maybe use my first name if we’d met on many occasions, or you’d use my surname if we were not so long acquainted. Because it was the polite thing to do.

When I accompany Small, who cannot talk to you himself, we are not simply transacting, this is not my buying a pint of milk from you whilst you talk to your colleague on the opposite cash till, this is me offering up my boy to you – for you to poke, prod, stick needles in – and the least you can do is remember who I am too.
#andwhatshouldicallyou.

A wonderful moment

I’ve been wondering for the last couple of weeks if Small is understanding a little more. When I would say to him, ‘More clapping…?’ he would process this and then clap his hands. But I couldn’t be sure if this was because I’d clapped my hands or because I’d used the word ‘more’ and he had just clapped his hands usefully for more in the hope that there was food involved. For Small the word ‘more’ covers all things to do with food. It’s hilarious. It runs the gamut from ‘I’m hungry, is it time to eat yet’, to ‘Could you give it to me faster please because I am starving’, right the way through to ‘I can hear something rustling is it by any chance food for me?’. Yesterday at tea time I was handing Big a plum for pudding and Small saw and just said ‘More, more, more!’. It’s probably time to try a new word, but I love this one.

Anyway.

On Saturday when I picked Small up from respite his wonderful care provider said, ‘Watch this’. And she proceeded to sing ‘If You’re Happy and You Know it’ to Small.
It went like this:
‘If you’re happy and you know it, clap your hands…?’
Small waits, processes…fifteen seconds… clapped his hands.
‘If you’re happy and you know it, clap your hands…?’
Small waits, processes, ten seconds…. clapped his hands.
‘If you’re happy and you know it and you really want to show it, if you’re happy and you know it clap your hands…?’
We all clapped.

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I have made him do this every day now since then and he never ceases to amaze me. Because this…. this is understanding… it is cognition on a very definite level. And on one level this is small, it’s just hand clapping but on another…. well, you get it.

Ethans Escapades