Monthly Archives: June 2013

Good News Friday #12


What a week! Boo’s diagnostic tests came and went and left quite an emotional trail with them at the beginning. But they are done, and at this point, I’m not even worried about the long (probably two month wait for results). The rest of the week has been very unusual and all the better for it. Yes: the good news for this week is that so much of it has been about Sissyboo.

Sissyboo has more to put up with than any 5-year-old should. She adores her brother, but knows things are not well with him. She has to accept the enormous amount of care and attention he needs as a child totally dependent on others 24 hours a day. She doesn’t have her Mummy in the same way any more. Boo’s physio takes priority over most things. It would be silly to pretend we could live our lives in such a way that she wouldn’t be affected by Boo’s disabilities. She will be. My mission is to try to make sure the effects are minimised and as positive as possible. I don’t always get it right. I often get it wrong. But the simplest things make such a difference. A half an hour here ten minutes there and her week is totally altered. As is mine. I miss my little girl.

But this week it has been more about Sissyboo than it has been in a long time. On Wednesday, she took part in her first school sports day. Before the fun began I had flashbacks to her preschool Olympics last summer in which she refused to take part and then walked through a running race, holding her keyworker’s hand while staring with singular determination at the playground tarmac. What a difference a year makes. She ran her heart out in the running race and laughed her way through the team obstacle race. I am so pleased about how she has grown in confidence and how comfortable she is at her school. Later that day our Homestart Volunteer came round to look after Boo and Sissyboo chose an activity to do with me for a couple of hours. She picked modelling (one of the many things she is currently obsessed with).


We spent 2 hours making a house out of an ice lolly box, complete with beds, wallpaper, stairs, TV and chairs. And we had a ball. Apparently, she’s decided she’s going to be an interior designer when she grows up.

Sports day was followed by the first of two inset days. The working mum in me is screaming (you are kidding me, I am so behind already and can’t lose any more sleep through late working) but other me was just thrilled to have time to spend with the Boos. We went to see a friend and her new baby in Oxford. It was fabulous to see them. She’s a good friend I don’t see enough. This is how good a friend, she took us to the open-air swimming pool opposite her house and looked after Boo so I could go swimming with Sissyboo in the lido. It was just about one of the happiest hours I’ve had in ages; messing about in the water, playing in the splash park with her, trying to perfect the art of swimming holding hands.

We spent so long in there that we left too late, got stuck in awful traffic; ended up peeing in bushes, eating at a fairly grotty services and getting home at 9 o’clock. When I got back The Grumposaur looked at me sympathetically and said, I bet you’ve had a rough day. No, it wasn’t. It was the best.

Over to you now. Here’s hoping you have lots of good news to share.



Pumping up the Courage to Write about National Breastfeeding Awareness Week

One of the many great pleasures of starting this blog has been writing posts in support of awareness raising days and weeks for causes I feel passionately about. I’ve already written about World Meningitis Day, International Kangaroo Care Awareness Day, Volunteers Week and Carers Week. Posts on these topics, all so close to my heart, have pored out of me rapidly and without forward planning. So why is that I have spent all week yo-yoing back and forth about whether or not to write a post for National Breastfeeding Week?

It’s not as if I don’t have strong feelings about breastfeeding, or more particularly about the medical, social and cultural support women need in order to learn and to continue breastfeeding. It’s not that I don’t understand the benefits of breastfeeding to babies and mothers and I feel strongly about the need to give mothers-to-be sound, unbiased information on these benefits. It’s not that I haven’t experienced for myself the wonderful bond breastfeeding can create between a mother and child.

No: I have to admit that part of my reluctance stems from sheer cowardice. Feelings run high when it comes to breastfeeding, and while I’m not too worried about angering people (although that’s far from my intention) by my blogging, I would hate myself if I made anyone feel bad about their choices or those foisted upon them.

And that’s what worries me about this whole business, really. It’s that I worry how something so natural – as we keep being told breastfeeding is and obviously should be – has turned into a cultural debate in which mothers are often the losers. A debate which can have psychological consequences that may run as deep as breastfeeding’s benefits. And you know what? Like most of the cultural debates that surround women and their bodies, this is an old chestnut. Centuries old. And that worries me too. Because what a longer, historical view of the breastfeeding debate shows is that whenever the word nature is evoked in relation to women, culture is lurking in the shadows, teaching women how to behave in natural ways and berating them if they won’t or can’t do.

Before I raise my head even further above the parapet or pump  (to choose a more appropriate metaphor), here are my breastfeeding experiences.

It never occurred to me that I wouldn’t breastfeed my kids. The reading I’d done suggested it was a no-brainer. The health benefits to any children I might have and to me were obvious and I wanted my kids to bond with me and their brains and bodies to develop well.

I thought, though, that I wouldn’t beat myself up if I couldn’t breastfeed. I was breastfed, my sister was bottle fed. She is bright, has a very close relationship with my Mum and has always been in excellent health. I aspire to be a smart cookie, adore my Mum, but have had pretty rotten health for most of my life. Anecdotes can’t stack up in the face of medical research to the contrary, but I admit it was handy to know I could cling to this example  if the worst came to the worst and I couldn’t breastfeed my kids. My sister did just fine.

In the event, though, the worst came to the worst and the anecdotes were no help at all. Sissyboo nearly died during labour and I had a brutal and botched c-section that saved her life. I am still in pain because of it. As I lay in my hospital bed in the days after she was born, I felt numbness in my abdomen and excruciating pain simultaneously. I tried to feed Sissyboo but she wasn’t getting enough milk. She screamed constantly and was badly jaundiced. I was getting more and more exhausted.

They kept doing the heel prick test to monitor the jaundice and she got  acute impetigo on her ankle where the doctors were holding her. She was put on high-dose antibiotics. So was I. She got oral thrush; I got nipple thrush. We kept giving it back and forth to each other. Breastfeeding was just about the most painful thing I had ever experienced. I called an NCT breastfeeding counsellor when I got home and she was amazing. I said I felt I was doing it wrong and failing my daughter. She said that wasn’t true: we were both ill. We needed medical intervention. Creams hadn’t worked, so I was put on Fluconazole by a sympathetic doctor. It was nearly Christmas and this had been going on for nearly 6 weeks. I loved my daughter, but hated my life.

When the Fluconazole ran out I’d been advised I could get one more dose to try to clear the thrush. I went back to the doctors but saw a locum who saw my daughter’s white and red, horribly sore mouth and my inflamed nipples and told me (this is no lie) that I needed to get over it. ‘Breastfeeding  hurts’. She refused the costly (around £20) prescription. I knew she was wrong but was too devastated by the past 6 weeks to argue. I went home in tears via the chemist and bought a box of formula. The guilt was extraordinary. I thought I was poisoning my baby; that she would hate me. She’s 5 1/2 now; we couldn’t be closer. She’s very healthy (touch wood) and bright as a button. Putting her on formula, though I felt utterly defeated and the guilt was excruciating at the time, was the best thing I could have done for us in those early days.

Now, fast forward to Boo, born 11 weeks early, on a ventilator for a time, in an incubator for 4 weeks, having suffered a massive brain bleed. Guess what? Yep: I breastfed him effortlessly and successfully for 11 months. You see this birth and its aftermath were traumatic, but I knew the potential benefits for Boo, as for all prem babies, were even greater than for his term sister. I expressed every three hours until he was fully breastfed at 35 weeks gestation. You can read more about my experiences of kangaroo care and learning to breastfeed Boo here. But what made the difference between my experience with him and his sister was the wonderful support of a neonatal nurse (without her I don’t think it would have happened) and sheer luck (not a word I use often in the context of Boo’s prematurity). I was psychologically traumatised by the birth, but after a couple of weeks I was physically OK in a way I wasn’t after his sister’s arrival. And for inexplicable reasons, Boo had read this manual even though he’s pretty much ignored all others. He knew what to do. From 32 weeks gestation. Even though he was too weak to take more than a few sucks at a time.

What my experiences have taught me is how important the right support is when you start breastfeeding. But they also taught me how crippling the guilt can be when you can’t. I know you’re not supposed to say it, but sometimes you can’t. Sometimes it is better to give up. Sometimes the dire consequences of not giving up outweigh the benefits you hope to enjoy.

So the support for mothers should cut both ways, in my view. Yes: encourage women to breastfeed; do more, as this awareness week is doing, to make breastfeeding more culturally acceptable in public (and it gets me really annoyed we have to even fight this particular battle in 2013). But also, let’s support mothers who aren’t able to breastfeed, despite their best efforts.

As I said before, the guilt associated with breastfeeding (as with many aspects of motherhood) is not new. One of my favourite novels is Maria Edgeworth’s Belinda, published back in 1801. Edgeworth was an Irish novelist much beloved by Jane Austen. Part of the story of Belinda concerns an enigmatic socialite called Lady Delacour, who likes a bit of cross-dressing (as you do in 1801) and makes a disastrous marriage to a man wholly unworthy of her. During a pistol duel over a male lover (I told you think was a good book, there are ghosts, too) her pistol misfires and bruises her breast. She spends much of the rest of the novel locked away in her dressing room administering lotions and potions because she has convinced herself she is dying of breast cancer.

Initially we think she believes this because of the bruise she’s sustained, but it transpires that maternal guilt (familiar all those centuries ago) is to blame. Lady Delacour had a child. It died. At the time it was routine for women of her status to put their children out to nurse (that is, to have a wet nurse) but she breastfed the child herself. What becomes clear is she thinks her fashionable lifestyle (because everyone tells her this) has poisoned  her milk and her baby. If she’d given him to a wet nurse, she says, he might have lived.

So when her next child, a girl is born, she is  put to nurse and raised by another family. Lady Delacour doesn’t have cancer and by the end of the novel is reconciled with her daughter but her guilt haunts the reader long after you close the book. The cultural assumptions of the day led her to believe she was an unnatural woman. And it nearly kills her. It’s a work of fiction, but the demons conjured are very real. Still.

It is almost unimaginable now that breastfeeding mothers could feel the guilt Lady Delacour does, although sadly we do know stories of breastfeeding mothers whose drink and alcohol dependency does affect or even kill their children. No: her guilt is more commonly experienced by those who see themselves failing because they formula feed their children.

I guess what I’m saying is that I fully support the work of National Breastfeeding Week. I am eternally grateful to the NCT breastfeeding counsellor who tried to help me with Sissyboo and I thank S, the neonatal nurse who gently encouraged me to feed Boo when the odds were really stacked against us. But as well as advocating for the appropriate levels of support for breastfeeding mothers, please let’s also support those who struggle or can’t.

And here’s one particular piece of practical support we can and should give to formula feeding mums. I was horrified when Boo was hospitalised with infantile spasms earlier this year to find that parents of hospitalised babies who have to room in with their kids don’t get food provided unless they are breastfeeding. In Birmingham Children’s Hospital, where we were first of all, they didn’t offer me a lunch or dinner menu because they assumed that Boo, as a premmie, was formula fed. Thank God for my Mum, who sent in picnics via my sister. When I moved to my local hospital they agreed to feed me as I was breastfeeding, but a woman two isolation rooms down, and giving her very sick boy SMA, was not.

When you are exhausted, permanently attached to a screaming child you can’t leave unless someone comes in to relieve you (and you are lucky enough that Norovirus protocols aren’t restricting visitors) you are fortunate if you can pee or shower. You are running on emotional empty. You should be fed. Whether you buy Aptamil or not.

So this week please so support National Breastfeeding Week and breastfeeding mothers, but spare a thought for our bottle feeding sisters. Sometimes we’re the same people, you know.


First Small (supported and awkward, but who cares?) Steps

These feet were made for walking, and that's just what they'll do

These feet were made for walking, and that’s just what they’ll do

Last night I had a variation on a recurring dream. Boo was smiling at me (he always smiles in my dreams as he invariably does in life). And then he nonchalantly clapped his hands. I cried tears of joy. I woke up with damp eyes. I have dreams like this (in which Boo runs up to me in the local park arms outstretched or, weirdest of all, Boo crawling as a 29-week 3lbs 11oz prem baby in his incubator) at least once a week. And I love these dreams (OK, not the incubator one: that freaked me out). You see these dreams give me a glimpse of a life I want for Boo. That if I see it, even if only in my sleep, I dare to believe might actually come to be. But I admit, it’s hard not to get a little down when I wake and those sleepy tears of joy turn into the quiet sobbing of regret. When I remember that he can’t do those things and, if I allow myself to be honest, that he may never be able to do some of them. Ever.

For those of you who might not know the indomitable and gorgeous Boo (you should, he’s amazing) here are some things to know. Boo probably has quadriplegic cerebral palsy after sustaining a significant bilateral brain bleed at 3 days old (he was born 11 weeks early) when he contracted meningitis. We are awaiting the test results to confirm that tentative diagnosis. He also developed a form of epilepsy (infantile spasms) at Christmas which can cause physical and cognitive regression. Although the seizures are under control they can return and the damage may already be done. At nearly 15 months (or 12 months corrected) he can’t sit independently for more than a few seconds and his trunk control is not great. He has dynamic arm tone (so the tone varies from the normal to high or spastic) which means he can’t manipulate or reach for objects with ease (although he does do both in his own energetic Boo-like fashion). He can’t crawl and likely never will. He can’t roll either.

He gets quite frustrated, as you can imagine. But he is also one heck of a determined chap. His developmental progress is glacial but every step in the right direction is huge, I tell you. Nothing comes naturally to him. So when he opens his hands, uses a pop up toy, gains arm function in sitting or rotates a bit on his side I feel pride to a degree most people (thankfully) can’t possibly imagine.

That’s why I am 120 percent behind this fabulous new fortnightly linky ‘Small Steps Amazing Achievements’ hosted by Ethan’s Escapades, and a lovely lady who knows just how I feel when these inchstones are reached. I hope to be a regular participant. (No pressure, Boo, but get with the programme, already.)

I’ve already blogged about some of Boo’s more recent achievements and wanted to write something new for today, Since Boo cooperated (thank you, young man) at his last physio appointment, I can.

It is with huge excitement that I can tell you that we’ve added a new exercise to our physio repertoire: supported stepping.

You see Boo doesn’t do things in the right order. We can’t wait for him to sit (as you would with a neurotypical child) before moving on to more advanced skills. Of course it would help enormously if he could sit, but the wait for him to perfect that skill could take some months yet. And although physically they won’t put Boo past the 8 month mark because of this, cognitively he is a one-year-old and knows what he should be doing even is his body doesn’t always do what he wants it to do. He bears weight enthusiastically. He wants to stand. He wants to walk.

So when his fabulous physio said ‘Shall we try some walking, Boo?’ He smiled and my heart stopped. Of course his trunk control isn’t good enough for him to walk with us holding his hands as we did with his big sister when she was 11 months. Instead, the physio had to put her hands under his arms and encourage him to elongate one side and transfer his weight to the other.

But you know what? He did it. He bloody well did it! He lifted his leg, not a little but a lot, and he grinned like you have never seen anyone grin about anything. The tone in his legs kicked in and his legs came inwards but as the physio said, we can work on that. He kept going for about a metre for what were some of the happiest moments of my life.

You see these steps were not just an amazing physical achievement. To me they were a symbol of his determination, of how far he’d come. And although they don’t signal anything much in a predicative sense (who knows if he will ever walk unaided) they offered me something that (optimistic though I try to be) I badly needed that particular day. Hope. Hope that his future is brighter than I could dare imagine on our toughest days.

Small steps. Big deal. And this time, I wasn’t dreaming. I know. Because I pinched myself. Just to be sure.

Ethans Escapades

A Truly Magic Moment

Today Boo had his big diagnostic tests (MRI, lumbar puncture, full bloods and urine) under general anaesthetic. When the anaesthetist asked if I would like to kiss Boo once he was asleep and before I had to leave him, I felt sick and my legs turned to mush. It occurred to me that there was a chance (remote, I know) that he might not wake up. It felt awful.

But a few magic moments later (60 minutes later to be precise) he did wake up. He was grumpy as anything. But a bottle, some cuddles and two Welsh cakes later and he was smiling and playing again.

Post MRI

Thanks for coming back to us, Boo. We missed you big time!


Testing, Testing, One, Two, Me

It’s another big day in Boo Land tomorrow. I know… I need a better blog post opener than that. I’ve been overusing it lately. But to be frank, that’s because we’ve had a tonne of big days in Boo Land lately what with all the anniversaries of what happened or should’ve been. I’m done with it all now. I want the big days to end. I want a bit of peace. I think, I hope, tomorrow might be putting us on the road to that elusive destination.

You see, tomorrow Boo has his big diagnostic tests: MRI (to get the completest picture of his brain damage to date), a lumbar puncture and full bloods and urine tests to rule out genetic or metabolic disorders. We are, hopefully, on the path to diagnosis. A path, I hope, that leads to cerebral palsy, for that, unlike genetic or metabolic disorders, doesn’t scare me any more. (Now that’s a sentiment that 18 months ago I never thought I’d express. I hope my son has cerebral palsy because that means he won’t have anything worse.)

I am not looking forward to the tests at all. Boo needs a general anaesthetic and I don’t like the thought of them knocking him out, of taking him away from me, however briefly. But he needs the tests to be sure we know best how to help him and so that he has the right label to access the relevant services. In actuality, though, a diagnosis (which could follow months after the tests) probably won’t make much difference to our day-to-day lives. With incurable conditions you work mainly with the symptoms rather than root causes. Tomorrow won’t change Boo’s symptoms at all. More’s the pity.

I feel so sad, therefore, that Boo is being put through this. But he has been through worse, I remind myself, and he won’t remember this.

But we will.

We will always remember it. And that’s why I think I am finding this so hard, if I’m honest. I feel horribly selfish writing this, but if I can’t say what I think here on my blog, my virtual therapy couch, where can I? To be totally frank, I feel like what’s being tested tomorrow is not just Boo’s neurological or genetic makeup at all. What’s also being tested is me: my strength of character (or lack of it), my resolve to make the best of all this.

I don’t mean that I feel like I am being tested in a spiritual sense by a god, or Mother Nature, Dame Fortune or any of those entities to which humans (including me, at times) are apt to attribute life’s challenges. No: I feel tested by the game of life itself,  a game where I am player, audience member and umpire all in one. And all too often lately, I’ve given myself a slow hand clap, awarded the points to the other team and declared myself the loser.

I’m not the same person I was before having Boo. I am still me at heart, but a slightly more dysfunctional, less on-top-of- it-all, but somehow stronger, reprioritised me. It’s taking a while to get to know the new me and we’re not always as pally as I’d like. If this is a test, I feel like I’m only just hovering around a pass mark.

It wasn’t always like this. I was always quite good at tests. I was a bit of a swot as a kid. Who am I kidding? I’m still a swot. I hated school, but loved learning. It’s why I pursued the career path I have. Tests of learning have always made me nervous, though. I can almost taste the rising nausea I felt  before school exams as I write this. And I couldn’t bear all those conversations friends would want to have with me before and after GCSEs, A-levels or Uni finals (‘How many hours did you spend revising trigonometry?’, ‘What did you put for 18c?’). How pointless was all this mindless chatter unless the point was to make everyone around them feel as worried as they were?

The odd thing, though, is that for all my pre- and post-test nerves, I have never panicked in an exam, or in a driving test, or when giving a lecture to over 300 students or to a room full of my peers. I wasn’t even nervous when I set foot, unprepared because of Boo’s seizures, for the half marathon I ran in March. I feel quite calm in such situations once they start. I even enjoy these experiences. Because it’s just me and the thing to be done. And I prep for things (oh boy do I prep for things) and I know I’ve done all I could in the situation. I just do my best. It’s usually fine. I don’t feel the need to compete with others, just with myself. And I have just the right combination of competitiveness and self-loathing to mean I’m quite motivated to do that. I am quite good at beating myself (or beating myself up, if you like.)

But these life skills are worth sweet F.A. in the situation we’re now in. And that’s one of the things that’s so very testing about what’s happened and what is happening to Boo and to his sister (who has had to adjust so much). I prep all I can to deal with Boo’s disabilities (a researcher by trade, I have spent days reading every article I could get my hands on about cerebral palsy, infantile spasms and paediatric neurology, and pored over SEN forums). It helps me. But it doesn’t really help Boo as much as I’d like to think. I can’t prep my way out of this. Ours is a life of triage.

To the extent that tomorrow is a test, it feels as rigged as the grabber machines I’ve just wasted a fiver on in Brighton. After all what kind of test is it when the best result is cerebral palsy? But, of course, the real test is not the one that will give us the diagnosis we all need. It’s how we deal with all of this. In the long term. Mostly, I think I deal with this pretty well. I accept the situation, but I advocate for Boo and I never just acquiesce.

But I’m only human and this takes a lot of work. The house is often a tip, the laundry is a constant work in progress, I remember to pay bills only at the last minute and I struggle to remember birthdays that I would have bought presents and cards for weeks before only a couple of years ago. Sissyboo can’t play grade 6 piano, her haircuts are always overdue (not as overdue as mine, mind), I can’t go in to volunteer at the school on the weekly rota or bake homemade cakes for the PTA at the drop of a hat. I am not as on top of my day job as I would like,  but I am working my holey socks off trying to be the best colleague, mentor and old-fashioned good citizen I can be when my resources are somewhat depleted.

I have a hard time accepting my imperfections even when I can accept cerebral palsy. I don’t like the fact that I am not the person I want to be, that I never really was, in fact (who could be?), but have always strived to be. But I am getting there. The greatest test for me is learning that this whole experience is one I can’t prep for. I can just do my best, get some things wrong and some things right as I work towards the end game which is making the best possible life for my kids. And to do that (and this is hardest of all for me) I have to not push myself too much. I have to be kind to myself and accept my weaknesses and my strengths.

But know this, whatever happens tomorrow, next month or in the next decade, I won’t fail you little Boos. I promise you. You are my biggest success story. And I couldn’t be prouder of you both.

Good News Friday #11

This blog is 11 weeks old today. This means it is as old as Boo was premature. Now there’s pause for thought….

It’s hard realising this. So much has happened in the last 11 weeks (I’ve gone back to work, started a blog, seen Boo’s neuro for the first time, got a date for his big diagnostic tests – on Monday, gulp – etc. etc) that it’s really brought home just how very early he was. I feel acutely how much he missed out on. The balloons we put up for his first on 2 April are still hung up, but they are shrivelled, small, and sad. Frequently over the past nearly three months, I have felt as deflated as they look.

But blogging has also made the past 11 weeks (and dealing with the last 14.5 months) so much easier to get through than they might have been. It really is the best form of therapy I’ve found and the people who read this blog or chat to me on Facebook or interact on Pinterest (yes, I have joined Pinterest) make it all so much more bearable.

In more good news from Boo Land, Father’s Day, which coincided with what should have been Boo’s first birthday passed off much better than anticipated and we were able to celebrate the good things that have happened over the last year or so. Best news of all for me is that I don’t have to go through the run of anniversaries (birthday, day he got meningitis, day he nearly died, day he came home, section date, due date) until the spring of next year. Please tell me it gets easier…

We’ve had some lovely physio and Portage sessions this week. Boo is still very far behind where he should be, but he progresses all the time. He did some supported steps for the first time ever on Monday and the smile still can’t be wiped from my face. Maybe he will be able to walk, a little, just maybe. (I’ll tell you more next week in a post I’m planning to link up to Small Steps, a new linky starting next Wednesday run by Ethan’s Escapades). He’s also had lots of fun using some sensory apps on the iPad.

In other good (actually unbelievable) news, I won two (yes: two) prizes in Sissyboo’s school summer fair raffle last weekend. One is a meal for two with wine at a pub about 400 yards away. So if I can find a babysitter, and Boo cooperates, that means The Grumposaur and I can go out for the second time in nearly 15 months! (I clearly need to read my own post on respite more often). Who says we’re unlucky?

And I got out for a run yesterday evening for 30 minutes. Boy, I’ve lost a whole bunch of fitness what with the injury I got after doing my half marathon for Bliss, the demands of work and one thing and another, but I want to keep it up if I can. I find that I need to be as strong as I can mentally and physically to get through the day-to-day and, for me, running helps. In any case, I badly want to do more fundraising for Bliss. I will do it!

Over to you. Most of you will be at Britmums Live today and tomorrow, but if you aren’t or are playing hooky, I’d love to hear your good news in the comments box below.

Disability and Daniel Radcliffe: Some Thoughts on The Cripple of Inishmaan

There’s a bit of a Daniel Radcliffe obsession in our house at the moment. Sissyboo discovered the Harry Potter films about a year ago and has watched the first three. Many, many times. I am about to cave in and let her watch number 4, but if she ever finds that out Dobby dies, I will have to emigrate for the sake of my sanity.

My own recent Radcliffe obsession began after reading some tweets last week from Hemihelp, a terrific charity that supports young people with hemiplegia, a form of cerebral palsy. I tend to associate Daniel Radcliffe’s career (unfairly, perhaps) with escapism: whether it’s the seductive charms of teenage wizardry, the terrifying psychological gothic horror of The Woman in Black, the surreal humour of A Young Doctor’s Notebook, or the all-sing-all-dancing razzmatazz of his stint in the musical How to Succeed in Business Without Really Trying. (I so wish I could have seen that. Don’t think I’ve said this on the blog before, but I LOVE musicals.)

But his latest role, I found out via Hemihelp’s Twitter feed, could not be more different; more real, in a sense. The play, a revival of Martin McDonagh’s The Cripple of Inishmaan (1996), is a black comedy set in the 1930s Aran Islands. What could be more real than the precarious balance of cruelty and humour that constitutes black comedy? Oh yes: a black comedy in which some of the cruelty and humour is partly revealed through the vehicle of disability.

We have had oodles more darkness and even more fun in our lives since Mr Boo’s premature birth at 29 weeks gestation last year and all the associated challenges (developmental delay, epilepsy and likely quadriplegic cerebral palsy) it has brought him. If it weren’t for Mr Boo, I’d have greeted the news of Radcliffe’s new role as the titular ‘Cripple’ with the rueful interest of someone who has always loved the theatre but doesn’t go any more since having kids. But having Boo has given the performance a different resonance for me. It’s made me think. A lot. About disability and visibility. About difference and combating others’ fear of it. About my fears about others’ recognising Boo’s difference as he gets older. Of my greatest fear: how Boo will react when he develops a sense of his own difference.

Now I should preface what follows with a disclaimer: I don’t know the play and I am very unlikely to see it. Most of what I know has been gleaned from reviews and interviews. This means that I actually know very little. But from what I do know, I have been extremely impressed with Radcliffe’s account of his preparation for the role.

You see, the precise nature of Billy Claven’s disability is not specified in the play. Radcliffe has used what clues there are (that Billy’s disability was discernible from birth and affected one arm and leg) to identify his character as having hemiplegic cerebral palsy. In an interview for What’s On Stage, Radcliffe is quoted as saying that he wanted to make the condition ‘specific … rather than attempting some generalised “cripple” thing. To me, that is kind of offensive … That’s not doing justice to people who are disabled or to the character that Martin wrote’. Like I say, I haven’t seen the play, but from what I’ve read in some very positive reviews, Radcliffe’s doing the part and the play more than justice. But what about ‘people who are disabled’?

The casting of able-bodied actors as disabled characters is always politically contentious, for obvious and very good reasons. And it often gets embroiled in wider discussions about race and performance. You only need to see the recent furore about Blair Underwood being cast as Ironside in NBC’s new TV series to get a flavour for the contours of this debate and the anger such hiring decisions can provoke.

For what it’s worth, my own view is that while the debates about race and disability overlap where it comes to questions of performance, they are also quite different in several ways. The long history of white actors ‘blacking up’ to play Othello simply because playing Shakespeare was presumed to be a white man’s game is, in various ways, different from an actor without additional needs playing a character with them. Certain disabilities (although far from all and the severity of the condition is, of course, crucial) prevent some actors from undertaking the particularly physical rigours of theatrical work for many nights a week and several afternoons. That said, I strongly feel (even more strongly now than I have ever felt before) that there are nowhere near enough opportunities extended to trained or aspiring disabled actors. TV, theatre and film are so depressingly normative in so many ways.

Depressingly because life is so much richer and, indeed, messier than soaps or most box-office smashes lead us to believe. Depressingly also because the media and the arts so indelibly inform our preconceptions of the world around us. If the mirror they hold up to the world only reflects part of it, the consequences for those left in the shadows are unpalatable.

So when a well-known actor, unusually admired by generations of fans, does his research to inform his apparently excellent performance of a disabled person, I feel optimistic rather than a sense of despair or offence. Despite my regret that disabled actors are not as prominent in our arts culture as I would like (that able bodied actors play disabled parts routinely, but the reverse is rarely countenanced), l feel nonetheless energised that Radcliffe’s talent and influence will help to make a particular disability, one not too different from my son’s, more visible.

And visibility is so important. Because what we see changes how we see. Theatre, TV and film (not to mention advertising) have a huge role to play in altering perceptions and while they should not be made uniquely to bear the responsibility for combating prejudice or ignorance against disabled people (families, schools and, dare I say it, the government, are vital here) they can do so much to recalibrate our sense of the richness and diversity of human experience, of which disability is a part.

Odd though it may sound, one of the things that has most excited me about Daniel Radcliffe taking this part is how little has been made of the character’s disability in the reviews. His performance has been praised not as the performance of a disabled man, but as a performance. Disability is one aspect of this, but it is only one, just as hemiplegia is only one aspect of Billy Craven’s character, or cerebral palsy is of my son’s.

And this is where the real work of the performance lies and where theatre can do so much for people with additional needs, I think. By making visible something hidden as the script of McDonagh’s play strangely hides or mystifies Billy’s disability by refusing to name it, the thing – this marker of difference or strangeness – can become a part of the wider cultural fabric, of the overall texture of life in all its beautiful diversity.

This is the kind of world I want Boo to inhabit; a world where he is visible for all the right reasons and his contribution to this beautiful diversity is acknowledged. Oh, and by the way, if he wants to pursue a career in acting, I’d like him to have the opportunity to live out his ambitions, too.


You know you’re a Premmie/SEN parent when…


…you have more medical appointments in a week than hot meals.

…the guy who runs the hospital car park occasionally lets you park for free because he is worried about your bank balance.

…you can direct lost visitors to parts of the hospital people on reception have never even heard of.

…you are pleased your favourite syringe made it into the steriliser and is ready for use.

…you have a favourite syringe.

…you don’t just know how many mls of each medicine your child has daily but can convert it to mgs without thinking.

…you can say things like periventricular leukomalacia without tripping over a syllable or breaking into a sweat.

…you are mistaken for a paediatric consultant (this has happened to me: three times in two different hospitals).

…you can speak almost entirely in acronyms (PVL, IS, GDD, IVH, PDA, NEC, CLD, SEN, IEP).

…you use the term inchstones rather than milestones.

…you stop using the word normal (even with air quotes) entirely and say typical.

…6 hours sleep feels like winning the lottery.

…you can parrot huge chunks of ‘Welcome to Holland’.

…you don’t see a child with disabilities and think what’s wrong with them but notice their amazing smile or beautiful face or how funny they are.

…you see what a child can do and not what they can’t.

…you are pleased when dressing or undressing your child becomes a wrestling match because it shows they have the muscular and mental strength to fend you off (see Exhibit A below and I hope he’s not intentionally flipping me the V, by the way).

…the smallest thing (the opening of a hand, the mouthing of a word, an act of mimicry) can make you happier than you ever imagined possible.

…you are utterly floored when your child tries to wave at you for the first time in their life and nonchalantly transfers an object from one hand to another as if they’d being doing it all their lives. Both of these things happened today, and yes, I am writing this post with tears of joy in my eyes.

…despite all the heartache and anxiety you feel lucky and grateful every damn day.

I would love for you to add your own ‘Whens’ to this list. Please use the comments box below. I love to hear from you!Image

On Fathers and Sons

Two significant days roll into one today. It’s Father’s Day, of course, and Mr Boo’s due date anniversary. He is one year corrected now (Boo, that is). There’s no more hiding behind ‘he’s not yet one’ any more. I’ve done that a lot. Mainly to make others feel better. But he’s come so far. We’ve all come so far.

This time last year Boo had been home from hospital for 5 weeks, having spent 6 weeks in two NICUs. He was 35 weeks gestation. You could almost feel the happiness and gratitude in the air as you stamped your feet on the welcome mat at chez Boo (once you’d used a hand sanitizer, of course). He’d survived. He was home. We were all together.

But the happiness was tinged with fear over Boo’s future. I knew he wasn’t going to be unscathed. I just knew. From day 1. As I wept, shook with fear and wrung my hands, Boo’s Dad, The Grumposaur, told me it would be OK, that he wouldn’t worry about problems until he knew for sure they existed. This wasn’t just for my benefit. I think he genuinely didn’t worry at that point.

But now, even without the official diagnosis that should come in the next few weeks, it’s clear there’s a lot to worry about. Our Boo is very different from the neurotypical child we imagined we’d have. He can’t roll or sit independently yet. He’s unlikely to crawl and who knows if he’ll ever walk. He isn’t going to be in the 2028 Olympic velodrome, Grumposaur, at least not in the mainstream games.

We’ve travelled a long way over the past 12 months, The Grumposaur and I. Further, I think, than we have had to in the nearly 19 years (yes, I said 19 years) we have been together. But we’ve both ended up somewhere different.

Several people have likened the process of coming to terms with a child’s disability to the grieving process. If it is, then I’ve skipped some stages (denial and anger) and finally moved through to acceptance, although guilt still haunts me. But The Grumposaur is not in the same place. I hate to see the anger that consumes him; I hate to see him so sad. He’s not in denial any more, but sometimes I wish for his sake that he was.

As a feminist and as a Mum, I don’t think your child’s gender should or does make any difference to your feelings to them. I know The Grumposaur doesn’t love Boo any more than his sister. But I also know it hurts him so very much because it is his son that has been affected in this way. That he won’t lead the active life his Dad had imagined for him, not  in quite the same way, at least.

I wish The Grumposaur and I were on the same page in the grieving stakes. But we’re not. And it’s hard. Really hard. And sometimes we play at rather than live happy families. But mostly I just want to take the pain away from him, to say the things he wants me say (I honestly don’t know what they are any more – after nearly 19 years I don’t know what to say to my best friend – it sucks!). I wish I could tell him about this blog. But I don’t think now is the right time. One day. Maybe.

What I want to say to him this Father’s Day is that we all love him very much. Sissyboo has always been a Mummy’s girl, but she doesn’t him any the less for that. When she gets over the fake anger, she loves it when I am home late from work so she can have a Daddy and Sissyboo party. She thinks his cycling is amazing and loves that the two of them are swimming buddies. Playing animal, vegetable, mineral with him before I read her her last story at night is a highlight of her day.

And Boo? Well he just adores his Dad. When Boo cranes his neck back to look up at him (his Dad’s well over 6 foot) he has a look of real awe. He finds his Dad completely hilarious and a very comfy cushion. I know they will be very close. I know their relationship will be not just rock solid but something really special. I can already see it. I love seeing it.

We have so much uncertainty in our lives. And goodness that hurts sometimes. But this I do know. The Boos and I love their Dad so much and we are so proud of him. And this Father’s Day we will celebrate this and Boo’s unbirthday simultaneously.

We’ve come such a long way and we have a hell of a lot further to go. But, we’ll get there. I know we will. It doesn’t always feel like it, but we are stronger now than we’ve ever been.

So Happy Father’s Day, Grumposaur! And here’s to him and Boo riding tandem round Herne Hill one day. I’m telling you, it’ll happen. Just you wait and see.

Good News Friday #10

I cannot believe I have been blogging for 10 weeks. I cannot believe anybody but me has read my blog. I cannot believe you are reading this.

And, I’ve said it before but I’ll say it again, I cannot believe how welcoming the blogging community is or what good therapy blogging is. I still struggle greatly with all that’s happened to Boo and with the uncertainty over his future. I hate how it has and will effect his sister. But I also feel proud of my kids, grateful for the support of others and now I am happy more often than I was before I started the blog.

The act of writing Good News Friday has been a big part of this change of mood and attitude. Forcing me (and sometimes it has been quite an effort, I can tell you) to recall and pause on the good things in my life on a week-by-week basis has really helped me get a much better handle on things. And hearing the good news you choose to share with us really lifts my spirits.

So in Good News Friday this week, the headline is: ‘Blogging got me through a tough day’. Mr Boo’s due date anniversary is this Sunday. Father’s Day. He will be one year corrected. There’s nowhere to hide now. I have fretted over and fetishised this day for months. I dreaded it and am still dreading it. When I woke up feeling sick and headachey last Sunday I thought it was the anticipation of 16 June.

Wrong. While eating breakfast it hit me. Boo was due on 16 June but I fully expected to meet him on the 9th when his Caesarian date was booked. He arrived 10 weeks before that date. 11 weeks early. Funny how the body remembers things the mind represses.

I found last Sunday so hard it hurt. So while I was drying my hair (I can do that at the weekend, sometimes) I took the opportunity to write a letter to myself exonerating myself of blame for what’s happened to Boo and us as a consequence. It was a post that I’d meant to write since I started the blog but couldn’t bring myself to contemplate. I wrote it faster than any post I’ve ever written.

I still don’t totally believe it, but writing ‘Dear Me’ was a great experience. So has been reading all the amazingly kind feedback I got and reading and re-reading the truly amazing posts others have linked up in this blog’s first linky attempt ‘Give up the Guilt’.

Blogging and bloggers made a bad news day into a truly good news week. Thank you!

In other news I had another mini escape this week, this time to Plymouth. It was work (hard work) and involved a lot of travelling. But the train ride was a little piece of heaven. Some quiet, some headspace and miles and miles of sea views. It took an enormous act of will not to run away for a few hours by staying on the train all the way to Penzance. But I didn’t. I got to my hotel (a hotel, a room of my own…) and worked and slept and worked some more (oh and tweeted and blogged, too, so didn’t get as much sleep as I should have done). I missed the Boos. But I was soon back with them, giving them cuddles and presents. And that was the best news of all. Getting back to where I belong.

Ok. Over to you. I love hearing your good news. And I’ve got one last tough anniversary weekend to get through. I know you won’t let me down. Blogging and bloggers have become two of the few things in life I know I can count on.