We need to talk about this more…

Miscarriage.
What a word.
For me, at least, it says: ‘My body failed me. In my most basic task of reproduction’.

All miscarriage stories will be different, but they all have some common themes: hope, fear and a loss of dreams.

Getting pregnant with Big was, well, uncommonly easy. Second try, there she was, a little blue line. As I panicked about the wedding in France we’d just been to (with its accompanying red wine and soft cheese) she grew fat and healthy and was birthed through the ‘sunroof’ when she utterly refused to be turned. My little breach baby looked at me, mewled, and was place on my chest.

But after that… my body turned on me. I could not get pregnant again. We wondered if it was the passing of time, added stress in our lives… and then… oh, oh, look, yes that one has held.

Six weeks in I miscarried. The care – a phonecall – was brief, the pain like a really intense period… nothing anyone could do, no advise given, you clearly can get pregnant so off you go again.

Roll forward six months and I am pregnant again. We are tentative, we don’t tell anyone, though the telltale signs of my not drinking coffee are there for anyone to see. Eleven weeks, nearly there… but I start to spot. We go to A&E.
It is the weekend. No scans are available.
What..?
Go home, rest, we’ve booked you in for Monday.

But good God that Sunday night. I bleed. Proper ‘I think we’re losing the baby’ bleeding. My brother is called in to come and sleep at our house so Big can sleep through. We blue light to the hospital with me trying to stay calm. All the while having, I later realise, a full on rushed delivery. My body is expelling our child.

Retrospectively, the care is appalling.

I am in the triage centre for ages as one doctor after another comes and tells me I am miscarrying.

I am finally transferred to a single room, and a nurse gives me an injection, no explanation given before she does it, to hurry the process along. My husband has to leave to be there when Big wakes up, explain where Mummy is. I am left, on my own, to see this through. There is no support from the nurses.

We still have the scan booked in in the morning, and so I sit, in pain, surrounded by other women here for their first, second scans. They are excited. I am nervous, frightened, sleep and food-deprived. And still there is more to come… and it is only when the D&C is done, that I am transferred to a proper ward, away from the pregnant women, away from the ward where they put everyone who doesn’t fit anywhere else… that I meet someone who takes time to care. She is the first kind member of staff I have met in this whole, unbelievable, 24 hours. Everyone else has done their job efficiently, but with no empathy.

I am sent home. Technically, there is nothing wrong with me anymore.

There was no follow up care. I spent 3 days barely able to get out of bed. I was exhausted, drained – both mentally and physically. I couldn’t talk to anyone when they asked how I was. I cried a lot. No professional came to knock on the door to see how I – how we – were doing.

Left to manage our own emotions, our feelings of emptiness, still look after Big, this was a really difficult time for us. We could have done with more help. I wonder if people think that because you haven’t broken your leg, or a ‘real’ child hasn’t died (possibly not, but they were real dreams, real hopes), that actually it’s not a big deal.

It is a big deal.

Miscarriage isn’t talked about. It’s still a little taboo. Perhaps we’re back to failure again. Or maybe it’s because it’s all a bit, well, messy.

When we missed our 12 week scan – hello? – we were called and admonished for not cancelling. I hadn’t really felt I should have to do that myself. Had, foolishly, expected a little joined up NHS thinking.

There needs to be a sea change here. There is a staggeringly high proportion of women who miscarry every year. They all need kindness. Compassion. To be talked to.

Follow on care.

To be treated separately to the women who are celebrating their soon to be babies. So we can privately mourn the not to be babies. Mourn the life not had. To be enabled to move on.

Hello Small. *waves*

Mumsnet is running a campaign to improve miscarriage care in England & Wales. You can read about it here:

http://www.mumsnet.com/campaigns/miscarriage-care-campaign

cafe

Caring about carers

I am a carer. Not just a parent, a carer. I know this. I know that all I do for Small – get him up (because he can’t get up himself), change his nappy (because he is still in them and won’t be coming out any time soon), get him dressed (because he can’t do this himself), take him down for breakfast (because he cannot walk), strap him in his highchair (because he doesn’t have enough sense of danger not to know that leaning out of it at a ninety degree angle might hurt him), feed him breakfast (because he can’t dig into his weetabix with his spoon)… you get the idea… is way above and beyond what I should be doing for a boy who is 4 next month. (4? I know..) And yet I do it, because it is what he needs to get through the every day and most times, I don’t think about it, it’s just what we do. But I recognise the extra strain it places on our life. The physical strain it puts on my body and the strain it puts on our day in terms of time it takes to get places, and the places and events that we can and cannot access. Picnic in the park? Thank you very much. Lunch in a cafe down a steep cobbled street? Thanks, but we’ll pass.

This is why I am so grateful to the other carers in our life who help to take that strain.

To the nursery workers who sit with him to make sure he interacts with activities as much as he can, who get him outside to enjoy the fresh air and the sunshine and who slowly, slowly makes sure he eats. Small loves loves his food, it just can take a mind-numbing while to get it in.

I am grateful to our initial respite worker who recognised that I was on my knees, could not see a way through my life and just took Small overnight, let me sleep, uninterrupted, and find a way to get all our lives back on track. Every other week she took him into her home, made him a part of her family. It was clear how much they enjoyed having him and clear how much he enjoyed being there. Society sees our children with disabilities as a bit of an irritating burden sometimes I think, but Small gives so much back in his laughs, and his cuddles and his enjoyment of just being In The Room (as someone so bluntly, but accurately, put it: ‘he’s a lot more ‘here’ isn’t he?’ Yes, yes he is…).

I am grateful to our current respite worker, who has taken him on, got to know him, worked with us to get to know who he is… so I can sleep easy knowing that he is safe, and cared for. And when he is away my head has time to empty out. I can hear quiet. So there is room to fill it up once more when he returns.

I understand that all these wonderful people do this as a job, they are paid. But I cannot believe anyone would put themselves into a caring role if they did not care. I see them go the extra mile and I know that they do. They care.

There is a man walks down out street… he’s about 40, I think. Every day he is ‘walked’ – no better word – twice a day by people who I assume must be his carers. He walks with an awkward gait, makes guttural noises as he walks and wears the helmet of someone who fits, or faints, for no reason. Every day, come rain or shine, off they go, round the park. This could be my son in 40 years time.

When I am dead and gone I hope, I so hope, that there are still people around who want to be Small’s carers, who will take him out, walk him, bring him out into the open to be part of the world. His sister will not be able – and should not have to – deal with it all by herself. This is what our ‘big’ society is for. This is what makes us human – the connections we make with, and the support we give to – other people. Otherwise, why are we here?

Some just need it more than most.

Next week is #CarersWeek. Shout it out, support it. These people, these incredibly people who do it through necessity or through vocation, they’re worth it.

You can find more information on Carers Week here: http://www.carersweek.org/

Parallel Lives

When I became pregnant with Big, I realised how I saw the world, and reacted with it, would never be the same again. I hadn’t somehow allowed for that. I would cry at everything, even if it had no relation to parenthood; news stories, films, adverts… suddenly these things that I had previously interacted with on something of a purely transactional basis – somehow were now affecting my core. A seismic shift if you like. Parenting pulls us out of that wonderful self-centred bubble and propels us towards connections…

And so it is with being the parent of a disabled child. Only in ways I hadn’t anticipated either.

In hindsight, going to watch ‘The Curious Incident of the Dog in the night-time’ probably wasn’t the best choice of a night out for OH and I. Our local theatre has linked up with all things NT Live, so off we went, excited at a night out. No children. Wonderful babysitter.

If you’ve not read the book it’s essentially the story of a boy who is on the spectrum – though this is never talked about explicitly – investigating the murder of his next door neighbour’s dog.

We had both read this book in those carefree hedonistic days of pre-children that I mentioned earlier. And we’d both enjoyed it, found it a fascinating read. I remember finding Christopher, the protagonist, interesting, enjoyed being allowed in to his headspace to see how he thought and reacted with the world. I smiled, indulgently, at the way in which he coped with the day to day.

But seeing this on stage, hearing the words lifted from the page… Watching him curl up in a ball to hum in order to block out the policeman talking to him… counting up prime numbers in order to stay calm… the way in which he Would Not let anyone touch him. This pulled on every single maternal strand I had. I empathised with his parents not knowing quite what to do, their frustrations with life turning out the way it had, their overwhelming love and need to protect their child… and I saw my own fear at Small getting bigger and how our life could change too.

Some of this world is my world now. And it turns out that I can’t watch it played out in front of me.

What broke me, made me suggest we didn’t come back for the second half was this…

Christopher is describing another child at school. This child, he says, isn’t even as clever as the dog who has died. This child he says, has to be fed with a spoon. He would never be able to fetch a stick even.

The audience laughed. Not horribly, but they laughed.
In a previous life I probably would have too.
But this child he was describing? He could have been my son. My son in whose achievement of being able to eat off a spoon I am immeasurably proud.
And so there was this divide between me… and the rest of the audience.
Who did not know this world.

This is not a critiscism of the play, or the audience. This gives us an insight into Christopher, how he thinks, where he ranks himself in the world – against other people – as we all do. But it made me sad. I didn’t find it socially unacceptable, just personally unpalatable. There is a difference, I think.

At the interval we departed. We were That Couple. We went to the pub, drank wine, and deconstructed the awfulness of not knowing if we should ask the other ‘Can we leave?’ but so pleased that we had. In a mark of how far we as a couple have come… we did not cry… it did not ruin the evening… no-one berated the other for a shocking choice made… we just recognised that: when we go out, all things disability are off the menu.

head facing away
What about Godzilla next time, Dad…?

Can I get some childcare over here…?

I am a working parent of a disabled child.
*Waves* Hi, me again. Still here. Still stitching it together.

I have blogged before about how much I enjoy my work. Need the (whispers it) money. And with Big, well, I still saw a career ahead of me, saw my children and my work dancing together in beautiful symbiosis. A wonderful mix of compassionate employer and sensibly priced easily-available childcare.

Then Small arrived.

Small, who emotionally floored me for a year; Small with his multitude of hospital appointments; Small, with the germs that knocked him for six. No three day cold for him, no, two weeks and you might dodge A&E if you’re lucky.
Small definitely complicated things.
Would anyone still like to give me a job…?

Staggeringly, they did. I’ve had two fantastic employers for whom part time work has suited both them and me and when things have made life tricky (see: hospital appointments, 2 week colds) they have been sympathetic. And childcare? What of childcare? I realise, speaking to other parents of disabled children, that we have been lucky. Small attends nursery for 30 hours per week – including school holidays – and the additional funding he qualifies for is put towards his 1:1. Who we love. Who he loves. Who puts him first – every single time.

However… Small starts school this year, and all this carefully constructed work/ life balance will have to be re-built. Re-thought. A new jigsaw. And it troubles me.

When I ask what provision there is for after school care or holiday cover for children like my son, information is scant. Childcare itself, frankly, is scant. The SN school he goes to runs a holiday club… during one week of the summer holidays. None of the childminders here take SN kids, ‘Oh, wait, one did… but no, she’s retired. There is another one in [names town 20 minutes away]?’ No breakfast/ after-school club is available.

Our only option, as I see it, will be someone nanny-like, someone to take him home from school, to make him and his sister tea, at which point I can re-enter and takeover the chaos that is bedtime. These are very specific hours, with a very specific skillset – I’m hopeful, but, you know…this is a big ask. And not a cheap one. At a time when my childcare bills should be falling, they will go in the opposite direction. Yay. No, wait, that’s not right… So, I am starting my search early because I want to get this right, I do not want to be one of the staggering 84% of mothers of disabled kids who cannot find a way to work. I’ve put in a lot of hours here and this cash is much needed. I didn’t put in those hours, learn this much, come this far to stop working due to lack of suitable childcare. Due to lack of care of their parents. We are forgotten sometimes. Us – our needs.

We – we parents of disabled children – blogged about the trickiness of working before. You can read about this here:

http://premmeditations.wordpress.com/2014/03/09/the-invisible-woman-working-with-a-disabled-child/

What is quite exciting is that there is now a parliamentary inquiry looking into the costs of childcare for disabled children. If you’re the parent of a disabled child, you can find it here and it’s your chance to make yourself heard:
https://www.surveymonkey.com/s/M63X2B8

You’ll have heard this stat before, but it’s worth repeating: childcare for disabled children is 3 times more expensive that that for neuro-typical children. You can see why, because the ratios will need to be smaller – one to one, sometimes one to two – and more training will be needed. It’s at this point I throw my toys from the pram and shout ‘This is NOT FAIR’. We are not asking for special treatment. We are asking – as we ask every day for our kids – to have a level playing field. The bottom line is: make this childcare affordable and you will be rewarded in taxes. And more emotionally contented members of society. (Who may vote for you next time). Surely this benefits everyone.

We want to work, we want to be able to afford to work, we would like to contribute. We have years of experience stored up to be used.
We have something to give. Let us. Enable us.
Because the value you will gain from us – emotionally, financially – has got to, just got to, outweigh the costs – emotional, financial – of neglecting us.

We are worth it. Let us know that we are.

We are linked up with the wonderful premmeditations who is hosting a blog link for all parents (working or otherwise) of disabled children to air their view on childcare provision:

http://premmeditations.wordpress.com/2014/05/06/lets-be-heard-the-parliamentary-inquiry-into-childcare-for-disabled-children/

Childcare

Planning… always planning…

Small starts school in September.

It amazes me that he’s grown that much that here we are… on the brink of what I sometimes think is just ridiculous. He’ll be one of the babies of his year as he’s July born and, well, when Big started school she was ready – more than ready – to go. She’d outgrown nursery and all that it offered and wanted and needed to learn more, in a different setting.

If I could, I’d keep Small at nursery forever, with his wonderful, thoughtful carers.

I suspect this would be doing him a disservice.

Whilst Small cannot talk, he cannot walk, he cannot eat without assistance, the Small-ness of Small is coming through and there is much that he will benefit from at school. We had asked for a dual placement so that he can get all the benefits of an SN school with the socialisation of the mainstream school that is, quite literally, across the car park. It is also the school that Big attends and so for one year I get to fulfil my not very big dream – and yet one that every parents just assumes will happen – of my children being at the same school. Just as it should be, If only for some of the time.

His SN school has suggested a clever plan. That they create his very own, very individual timetable, that they place the very important things into the week – his two sessions of hydro, his one session of swimming, his physio, horse riding (horse riding!) and then ask the mainstream school to perhaps tailor their week so that the fun things we’d like Small to be included in – music, art, singing, hanging out with the other kids – could perhaps fall into the other parts of his week. I love them for thinking like that, and I think it would work. Small is never going to be academic, no university education for him, but he will enjoy and benefit from these activities and I’m so glad that these people, who barely know him, are thinking so intuitively about his needs.

… there is a part of me that has broken today. When Big started school we scoured ofsted reports, wanted to know about after school activities… we were excited for her. This Big Step. But today for Small we talked a lot about toileting, feeding, manual handling, hoists… So, quite reasonably – for his own safety and that of the staff – for a little moment he became a project, a logistic that needed solving which led my husband and I to wonder if it was time to move from SN buggy to wheelchair. This step that I am not ready for. I am not ready to sing ‘Disabled!’ as I take him to school. For all that he definitely is. For he is still my little boy. Who just needs pushing for longer than you’d expect.

And I still have to square that circle. That nothing we do with him can be spontaneous. It must be planned. Rigorously. So much more so than if he were ‘neuro typical’. And I have to remember to give myself a break after these meetings, these planning sessions, just to re-group, to re-orientate my brain almost because these are tiring and these are emotional conversations…

So school planning -‘Transition’- starts early. So by September, when he starts, the manual handling training will be done, the hoists will be in place, the evacuation plan will be written… all the stuff that is about my little boy, but is not my little boy, will be done… so we can concentrate on him enjoying school, benefiting from all those wonderful activities. And so I get to take that happy first day of school picture.

Just like every other parent.

On the wonderful-ness of imperfections

Nobody asks to have a disabled child. I can think of none of my contemporaries who would have sat down in their NCT class and said:
‘I’d like a child with disabilities please. I’d like to spend the first year in a state of total confusion, not knowing if they will see their first birthday. Moreover I’d like to spend all the times I’d usually have spent at baby group – discussing poo or lack of sleep – in a hospital near me, getting on first name terms with the A&E nurses. Lastly, as they grow up, I’d like to never really know if they will be able to walk or talk – I like a challenge’.

This is not what we ask for. This is not what we envision.

Society is afraid of imperfections. Our glances slide over the things, the people, we don’t wish to see, are somehow embarrassed of or embarrassed for. We fear the unknown. Would prefer to box it away in special schools and special homes. Out of sight so we are not reminded of our own frailties. But it is not so scary. There will always be imperfections, because they are what shines the light on all of us, and surely better to embrace them?

We say this with a knowing nod, we know it is a cliche, but I am a better person and my life is richer for having Small. He has taught me so much about myself and life that I would never have unearthed otherwise…

… I’ve stopped sweating so much of the small stuff. I’d be a liar to say that a messy house doesn’t bother me, or that I didn’t wish I had the energy to pick up the dropped food from the floor every single meal time. But I’ve learnt not to always do it, and that time spent with Small, just playing, cuddling, giggling, that’s what makes us both happy.

… We try to make the most of time. This isn’t as big as it sounds. We don’t do Great Big Symbolic gestures, huge presents, but we try and find a positive. Not every day, because some days are just so awful – so awful – that all I want is for them to end, but most days. What good thing happened recently? This did. Small kissed his Daddy. He asked him and he kissed him. Today was a more gallows humour moment over, should we get a stairlift, what a great way of conveying the laundry up the stairs it would be.

… I’ve stopped tolerating bureaucracy, being accepting of the easy option of It Will Do. I’ve started complaining. This most times revolves around Small, but who else will be his voice, his advocate? So I question more – why isn’t this in place? has this been thought about? who can help me do this thing? It’s wearing, but getting a result, moving a process forwards. Huzzah.

… I am more patient. Developmentally Small gets there in his own time and there’s only so much I can push him along. Getting grumpy that today he doesn’t want to practise the saving reflex over the peanut ball, that today he just wants to roll around giggling whilst I try and manhandle my slippery fish of a boy over it… that helps noone. So we stop, try something different. Or we go for a walk. Smell the fresh air. Give in a little to my little boy who’s just a boy. This also applies to simply getting out of the door. Small has so many ‘accompaniments’ that anything less than 10 minutes can’t be done. So there.

… I relish movement. Watching Small fighting against his body to turn around, reach a toy has made me appreciate my own body. The ease with which I can get dressed, walk up stairs, do up my buttons… it is a small miracle that I take notice of and am grateful for every day. And watching Big… I am not sad for Small, just happy and grateful for her ease of movement. Every day.

… I have met, and spoken to, the most wonderful group of parents that I would never have met but for Small. You all know who you are.

… I am always tired. But I think this may be just parenting.

If Small had been… not-Small, if he had been a’normal’ neuro-typical little chap my life would have been different. Less challenging maybe, less sad for sure and my back and knees in better shape. He has taught me a lot, this wise boy of mine and for that, and for the wide-eyed cheekiness that he has, for the blink-and-you’ll-miss-it wonder of his development, the motivation he now has to get that thing, THAT THING MUMMY!!!! I love him, and would have him no other way.

Working… with a disabled child

One woman stands up as the rest, 16 or so, remain seated, encouraging her to speak.
‘I’m a parent of a disabled child and… and… I’ve got a job too’.
As if a huge weight has been lifted from her shoulders, she sits down, grinning.

This, obviously, never happened, although if ‘Parents of Disabled Children who also have a job… Anonymous’ were to exist, I’d be right there, at the front, signing up.

There is an assumption amongst most people that having a disabled child must make you, the mother – for it is almost always the mother – a full-time carer. There’s that blurred line again – from mother, to carer. Mother has the lifeline mapped out – from totally dependent newborn all the way through, slowly, slowly to fully fledged independent adult. Carer tells you, immediately, that this is not going to happen.

There is guilt attached to being a working parent, and this somehow increases with a pre-school disabled child. Someone else is looking after your child for you in order for you to work. The guilt here is something that I had to work through. There is the overriding ‘will they look after him as well as I do?’ ‘If I’m not there for him every single day am I letting him down more?’ (because, at the bottom of my heart I will always feel like I let him down, just by his having been born as he is) ‘Will they understand him, love him, cherish him as much as I do?’ ‘How could they…?’ And because his needs are great, and his understanding is not, I worry, we all worry and yet… Small’s childcare provision is great. It is clear that his 1:1 loves him and with that I walk away each day safe and happy in the knowledge that he too will be happy.

‘Small goes to nursery….?’
‘Yes, yes he does. And whilst he’s there, I work.’

For many reasons, I have to work. For one, we need the money, plain and simple. For two, I love my job. I’ve had to re-arrange it since having Small. I no longer work 4 days a week, I do 2 and now that we’ve moved I work mainly from home. I can’t do the big projects anymore, I do the smaller ones, the ones that take more time and so need less days per week, but my hand is still in. I have not relinquished it.

But life with Small has not made this easy. You guessed it, there are hospital appointments, there are many therapists that both come to my house, that we also visit, who give us a program of work to be done. There are social workers to be talked to, school plans to be made… and every one of these needs an hour’s allocation at best. All during the working day. On top of this, there are people and equipment to be chased, new therapies to be researched. Nothing with disability is quick, everything takes time, and there is an innate assumption that this is ok. You’ve nothing better to do anyway.
‘I’m sorry, we can’t make that appointment, I’m working.’
‘…Oh.’

To top it off, the government, in its wisdom does not help the working parent. Does not help the working parent of a disabled child. I realise I’m late to this party but, as I blithely tried to up Small’s hours at nursery (by all of half a day a fortnight) I discovered that the additional funding he receives only funds his 1:1 15 hours per week. He does 30. The nursery had quietly been funding the other 15 out of its own pocket and had never told me. If they had not done this, I never would have got back to work. It’s that simple.

But they could not fund any more.
I could not, and cannot, believe the injustice of this.

I am not an expert on this subject by any stretch of the imagination but I’m pretty sure there are many many parents of disabled children who cannot get back to work because of this legislation. National say it’s a local issue, local say it’s national… but surely, surely this is a national issue? What is better for people’s state of mind, for their pockets and, ultimately for the tax coffers, than parents being helped back to work if they want to be? The alternative must surely be more expensive? a huge drain on those headline-grabbing benefits and a drop in self-esteem for those involved – with all that that brings. This cannot be cost-effective either fiscally or emotionally.

I will be forever grateful for Small’s nursery’s act of kindness.

The Special Educational Needs Code of Practise is currently being re-drafted. On page 46 you will see:
Local authorities must also secure sufficient childcare for working parents and must work with providers to plan and manage local provision to meet the needs of families and children in their area

I’m aware that this will be costly to implement and I wonder if it will make it to the final bill. I’d like to think that the long-term benefits will outweigh the short-term expense.
Am I being a little over-optimistic?

Two helping hands

I can’t be the only one who worries about posting about ‘achievements’.

These children of ours, the not neuro-typical ones, pull back from the norm in so many ways and Small has done this to me a couple of times now.
He’s doing this!
Oh, no, he’s stopped doing that now.
Bugger.

But I think also that all achievements are important, even if they turn out to go away again because, if only for a time, they are there. They are present.

So, watch as I get Small ready for his bath.

He is sitting on his changing mat, next to the bath, trying desperately to pat the bin because it is shiny. I am trying desperately not to let this happen because… well, because it’s a bin, and make a mental note to myself – again – to put it somewhere else. This does not happen.
‘OK, we need to take your top off now, are you ready? Jumper first’.
And I go to take his jumper off and… he puts his arms up for me to do this. He puts his arms up, he pulls them out at the right time and rights himself as it ricochets off his head. He does not fall back with the effort.
He does this again with his top and vest.
‘Well done, clever boy’.
Small looks at me, fleetingly, then taps his stomach gorilla style with both fists and claps.
I have no idea if this means well done me, but I like that it might, ‘Yes, well done you, you cheeky monkey’.

He is getting equally adept at putting clothes on. If I put his top over his head he will push his arms through.

I only really noticed how much he was helping when he got distracted one time – a label, a toy had caught his eye – and I was having to feed his arms through, rag-doll like instead.

Trousers are still beyond us though as he can’t stand independently. We do do it sometimes, just to try, and Small leans heavily on my shoulders as I wriggle his trousers down and he giggles at the oddness of it all. I think it’s important we attempt it, get him used to the idea, show him what’s next.

Again, again, it is the tiny forward-in-development accomplishments that make the most enormous difference to our lives. Every tiny achievement brings us that little bit closer to ‘ooh, that just got a bit easier, didn’t it?’

Ethans Escapades

Leaving the Smalls…

Ssh, listen, can you hear that? It’s the sound of plane tickets being booked.

Many many years ago my father, of Antipodean extraction, decided he’d had enough of the English weather and skipped off back to the country of his birth leaving my brother and I… a little bereft. I’m not sure Dad ever got it, why we felt we were being abandoned. But you’re grown up, his raised eyebrows seemed to say, you don’t really need me anymore. And the logical, 20-something side of my brain understood this, recognised this but still, you want your parents to be close, to be accessible in times of need – whether good or bad – and we lost this.

He has come back – he came for my brother’s wedding, again shortly after Big was born and again when she was 3. He has never met Small. We have visited too, but with young children for both of us, not to mention the huge expense of shipping a family of 4 by plane, and completely ignoring the fact that I am too absolutely-no-way scared to fly with Small, we haven’t seen him for 4 years. This is a long time. He’s now passed the 80 mark and, you know, ‘not getting any younger’. It’s time.

I am both exhilarated and scared out of my mind to the point of denial. This is not because I am frightened to fly. It is ‘freedom, adventure!’ versus ‘I am scared to leave my children’.

No. I am scared to leave Small.

He and I, we work in our little love bubble of two. It’s a funny world he and I inhabit, but it works and the other people in our lives, well, they fit into it, know their roles, but Small and I we are the lead actors. Our household broke into me and Small, OH and Big when Small when was born which I think is the usual order of things. When Small turned out to be… well, not what we’d anticipated, those teams never broke up.

I have never left him – either of them – for this long.

So, now, with enforced separation… I have to plan a childcare routine that will allow many, many things to happen. Big and Small still have to be got to school and nursery respectively. OH still needs to be able to work 5 days a week and these I think will be fine. But it’s the little things that I as me – mother, main carer, person-who-is-just-better-organised – do as a matter of course that now have to happen without me. Forms will need filling in, lunches will need making, clothes will need ironing… and so I am drafting in the big guns. Two lots of respite, two lots of parents will be on hand to help OH as he currently stands there trilling ‘La, la la’, with his fingers in his ears whenever I mention it.

Whilst I load up the Kindle and buy a new swimming costume. Well, it would be rude not to enjoy it a little, wouldn’t it?

466

Small is not a question to be answered

Nobody likes an information vacuum. And Small, with his un-diagnosis, is exactly that – a vacuum people feel the need to fill.

Over a period of ten days last month here are some scenese from our life:

Scene 1
We are on the school run – Big scooting on ahead with the boy from down the road, me pushing Small in his pram walking with the boy’s mum. I know her well enough to say hello to, pass the time of day with. We are not close. She is asking about Small and the results of tests we had done a while ago which had, once again, left us no further forward with answers. She asks these questions more than most people do, more than I encourage her to do, but, as we all do, I try to answer them.
But then:
‘Have they gone through his birth notes?’
‘Sorry?’
‘Have they looked back to see if this was something that had happened at birth?’
‘No, they’ve… no, it’s… we’re looking at genetic syndromes’.
‘It’s just, to me, this looks like something that happened at birth. Although, what do I know?’
And then she leaves me to tie her dog up outside the school gates and walk her son to class.

Scene 2
I am at the local playground with a new friend, her two children and Small. Small is in his pram, happily watching the other children and this woman is asking sensible, thought-out questions about Small after I’ve introduced the subject. She has even helped me get him into a swing. He loves a swing, but he’s a two-person job these days due to his dangly legs. We meet someone she has met at playgroup once, maybe twice. This woman clocks Alex in his pram, not out playing with the other children and comes over to him, takes his hand, makes baby noises to him. She does not say hello to me or ask Small’s name.
‘What’s the matter with him, is it Cerebral Palsy?’
I am dumbstruck. I take a short breath as if drowning, snatching for air. I do not want to offend her, or my new friend, but… ‘I’m sorry, have we met…?’

Scene 3
An e-mail arrives from a relative. It is 10.30 at night. At the end of it he asks, ‘Have you thought of William’s Syndrome?’
It is all I can do not to Google it. Which in the end I do the next day. It does not sound like Small. This relative has promised never, ever to do this again.

Each time someone does this, it ever-so-slightly rocks my foundations. Nudges the world I have built for me and Small and his symptoms with no name. I have to go right back to the start, convince myself that we have looked everywhere for answers, asked the right questions, made the right people delve into his very make-up for clues. We have done all we can.

These remarks are never taken lightly as on some small level we’d all like a diagnosis, a path, for our children… and I would just ask that people take a moment and ask themselves who they are trying to help when these verbal hand grenades are thrown, so very casually, out into the air.