Monthly Archives: May 2013

Good News Friday #8

I won’t lie: writing Good News Friday has been hard this week. I spent ages earlier trying to work out what I could possibly write. This is ridiculous. There are lots of good things in my life right now, in fact I’ve blogged about some of them already this week. But my mood is pretty low and the wood and trees are utterly indistinguishable. I’m struggling with the pressures of juggling the needs and demands of the kids, Boo’s appointments and my work. I have been working ridiculously late after the kids have gone to bed to catch up (not a popular domestic arrangement) and Boo has been sleeping terribly (3-4 hours a night) for a week. The cumulative effect of over a year of grotty sleep is really showing. But worst than all of this is waiting for the anniversary Mr Boo’s due date.

His actual birthday on April 2 was nice but tough in pretty much equal measure; his home-iversary on May 19 was lovely. But the wait until June 16 is unbearable and I can’t quite explain why yet but I know has something to do with the fact that every passing minute (and there are a lot in 11 weeks) brings home how much he missed out on. Just how premature he was; how vulnerable he was and still is. It’s left tensions running high in Boo Land and it hasn’t been a very happy place to be this week, to be honest. But there is still good news. And I will take time to enjoy it, PTSD be damned!

First of all, it’s half term. My child care arrangements for Sissyboo for the time I needed to work were flexible (coughs: non-existent) so we headed to my parents’ for as few days. I so wish I loved nearer my parents and sister. Those extra pairs of hands and sympathetic nods are priceless and the Boos love them so much. I didn’t have to cook for several days or do our laundry. Even though Boo slept appallingly, it was restful.

Second, today I had some dedicated time with Sissyboo to do whatever she wanted to do. We very rarely get this now and I miss it (I miss her) terribly. She called the shots and opted to spend our couple of hours going to the park and then gardening. Well, I say gardening. In reality this meant Mummy weeding the front garden and Sissyboo making a ‘special snail garden for all the unloved snails so they can live as a big, happy family’ and involved lots of chatting to the snails and confusing the neighbours and odd alcoholic walking to the corner shop two doors down.

But here is the big news. Why didn’t I realise it earlier? Why hadn’t the town council hung out bunting or set off fireworks? I know this will look like I’m shouting, but heck, I am shouting:


None. Zip. Nada. Not even an emergency one. Now before you get too excited this is not because Mr Boo has made a miraculous recovery of the kind folks I talk to seem to think might happen any day. He’s stuck with brain damage, I’m afraid. Frankly, it’s mostly because the world, his wife, and most of the NHS are on half term holidays, but still. This is the first time in the 54 weeks since Mr Boo got home that we haven’t had a minimum of 2 appointments in a 5-day working week. Our record is 8. It feels odd, but good. And we will be making up for it next week with 4, but still. Here’s hoping there will be more weeks like this to come. Lots of them.

OK over to you. I hope your good news comes more easily to you than it has to me this week. As always, I’d love to hear your good news in the comments book below, on the blog’s Facebook page, or on Twitter (@premmeditations). And I promise to be a bit cheerier next week. Promise!

Have a great weekend!

Truths my Daughter Taught Me


Being the parent of a premature baby or one born with complex health needs can be a scarily infantilising process. One of the many things I looked forward to when pregnant with Mr Boo was not feeling as bewildered as I did with his sister. OK all children are different but their needs are pretty similar when it comes down to it.

Not so, I found. There were these whole other worlds of prematurity and special needs parenting I barely knew about. The folks there spoke completely different, specialist languages and were too busy to tell you where to buy a phrase book. You had to listen hard, intuit as much as possible and trust that they knew what they were doing. It felt like one long (oh, so long) first day at school, where you missed the security of life until that point and feared what stretched out in front of you. There were lots of rules to learn quickly and that lots of people around you already knew but wouldn’t tell you because they’d forgotten there was a time they didn’t know them. There was no playtime at NICU school and no gold stars for good behaviour. And just like school, the minute you’d finally got your head around something new, your teacher came along and told you about the next thing, and the one after that. And you never thought the holidays would ever come.

I hated being in this position. In my work life I’m the one who has to stand at the front of the room and impart information like I know what I’m talking about. I’m supposed to know the answers and people trust I have them even when I don’t. Not being this person was totally disorienting.

More recently I’ve been feeling child-like in a totally  different and much more pleasant way. I’ve similarly realised I’ve had lots to learn. But don’t you find your attitude to learning depends on who’s the teacher? And I have the best: my daughter.

While I was pregnant I worried a lot about the impact of a sibling on Sissyboo. She’s had Mummy and Daddy all to herself for many years (she’d be nearly 5 when he was born) and while we thought she was good at sharing and thinking about others, we also knew that behaviour on play dates isn’t a reliable indicator of how a child will be with a little brother or sister. It was going to be hard on her, we knew that. We had no idea how hard. No idea that her Mum was going to go to work one day and not come back because she was in hospital with her little brother who wasn’t supposed to be born for another 11 weeks. No idea that he would spend weeks in a box looking purple and alien-like without eyelashes or fingernails. That it would takes weeks to get him home. That when we did get him home we couldn’t go out much for fear he’d get sick from the world of germs. That he would, in fact, get sick and start doing funny hiccups or fits as she came to know them. That he would keep going back to hospital. That she would learn to do physio with him. That he wouldn’t grow up as she had done. That his birth would affect him and her for the rest of heir lives.

I don’t want to pretend that Sissyboo’s response to this has all been sweetness and light. She struggles, just as we all do. In the past year we have seen her have tantrums the like of which she has never exhibited before. She periodically stops sleeping for days at a time and wets herself despite having been dry since the age of two and a half. We worry about her constantly and want to support her as much as we can. She deserves better. I’ll return to her needs and this difficult question of sibling support in another post.

For now, though, I want to tell you about the amazing things. About how incredible my daughter is with her little brother. About how much she’s taught me and what an astonishingly kind and compassionate girl she has grown into.

Here are just a few of the things she’s I’ve learned:

1) Acceptance is child’s play: I’ve blogged a bit about this already but it bears repeating, if only to remind me of one of the most important lessons she’s taught me. Whereas I, for a long time, resisted the world we’d entered after having Mr Boo, Sissyboo quietly internalised it. When she plays mums and dads babies are born ‘way too early [shake of the head], silly things’ and stay in the hospital for weeks before coming home. All babies in this imaginative world have physio and take medicine. And if they don’t, they’re ‘a bit odd’. Older children routinely get ill and get better and do ‘amazing’ things like practise their sitting or swallow food without choking. Her sense of normality has been utterly recalibrated as if she knows normality is the most misleading word in the English language.

2) Acceptance is not the same as giving in: My main problem with accepting cerebral palsy, developmental problems and epilepsy (now largely overcome because of my daughter) was my mistaking accepting for acquiescence. And I am not prepared, on Boo’s behalf, to give in to these conditions. But what Sissyboo helped me to realise was that acceptance is not the same as giving in. We can accept but still be ambitious for Mr Boo. I think I told you before she calls ‘disabilities’ ‘abilities’ because the latter makes more sense to her given all that disabled people can do. Sure, Sissyboo knows other children her brother’s age (and much older than him) can do things he can’t, but she never questions that he will learn these things in time. Between her and me he has the most enthusiastic cheerleading team as he practises his physio and works on his Portage targets. ‘He will walk one, Mummy, I know it.’ When she says it, I almost believe her. If it was down to her and his willpower alone, it’d be a done deal.

3) Laughter is the best medicine: Mr Boo has a brilliant, throaty laugh that could melt the coldest heart. And he laughs a lot. But he never laughs for anyone like he laughs for his sister. He can be miserable as anything and she can make him beam. He can get frustrated at his inability to grab a toy or move forward on his tummy and she can turn his tears to chuckles in seconds and give him the guts to have another go. The NHS should hire her out. She’s the best therapist he has.

4) Love can bring about change. People say the silliest and most offensive things to families of children with special needs, and we’ve had an unfortunate run of these in the past few days. But if Sissyboo has her way, things will be different. Her compassion and a wisdom way beyond her years are apparent within seconds of talking to her about her brother. When I took Boo into her school, at her teacher’s request to talk about babies, I was nervous. Her teacher said the children were unlikely to want to know about his prematurity; they would just ask Sissyboo and I questions about looking after little people. The first few questions went from the banal (‘what’s his favourite pizza topping?’) to the downright awkward (‘what’s the difference between a girl and a boy baby?’) Then they got sticky: ‘my little brother’s older than yours and he’s crawling. Why isn’t yours?’ The teacher and I looked at each other wondering which of us should step in to protect Sissyboo by answering for her. But before we had a chance she stepped right up and said with unusual confidence: ‘My brother was born VERY early and has been in LOTS of hospitals. And he’s AMAAAZING. He can’t crawl yet but babies do things at different times and it’s hard for him. He will do it one day. And we need to be kind and help him. He’s the best brother in the world.’ My heart started to thump and tears welled up in my eyes. Did I mention she’s 5?

Life”s not all a bowl of cherries in Booland and Sissyboo needs and will in the future need support of a kind I never anticipated because of her brother’s disabilities. This makes me very sad. But however much I worry about that, I never worry about the relationship between my kids, about how much she loves him and how far she will go to be his advocate.

The other day as we walked home from school she told me that one of her classmates had fallen off the climbing frame and her friend’s big sister was in floods of tears as she watched her little sis having icepacks and plasters put on. Sissyboo was puzzled by the big sister’s reaction and I was puzzled by my daughter’s uncharacteristic lack of empathy:

‘She’ll have been upset because she thought her sister was hurt,’ I said. ‘You would be the same if something happened to Mr Boo, wouldn’t you?’

‘No,’ she emphatically replied. I was surprised and it must have showed in my expression

‘I wouldn’t cry because I’ll always be there to catch Mr Boo. He’ll never fall off anything. I won’t let it happen.’

You will fall, Boo. And, despite what she thinks, she might not always get there in time to break your fall. But she’s got your back Boo. Be in no doubt of that.

You are one lucky fella. And I’m one heck of a lucky mum.

R.E.S.P.I.T.E. Find out What it Means to Me

Things have been changing pretty fast in Boo Land lately. After a year of never leaving Mr Boo for more than 2 hours at at time, and then only about three times since his birth, a year of doing every school run for Sissyboo, of spending every waking moment thinking about them and worrying about what I’d forgotten to worry about, suddenly I had an opportunity to think about myself.

I went away. For a weekend. With my sister. To our cousin’s wedding. In NYC. Yeah baby!

I was all set to book my ticket at Christmas when Mr Boo developed Infantile Spasms. I felt like our world, already devastated by the earthquake of prematurity and aftershock of cerebral palsy, was now about to disappear beneath the tsunami of epilepsy.

This was no natural disaster, though. There was nothing natural about this. It was wrong. It will always feel this way to me, I think. The only thing that could have been more wrong was for me to abandon the Boos just for fun. How could I have contemplated it?

But Mr Boo got better. The seizures got under control. He started (eventually) to get over the worst side effects of the miraculous yet dreadful steroids. And boy did I need a break.

I had been up with Mr Boo for every single one of the 100s of times he’d woken in the night since birth. I’d done physio with him at least twice a day for 9 months. I’d attended around 150 medical appointments (who’s counting?). I’d had (still have had) one haircut since he was born and regularly missed (miss) showers and meals. I needed some time out, however selfish that sounded and still sounds to me. So I took a deep breath (I regularly forget to do that too) and booked our airfares.

My sister said she wasn’t convinced I’d get there until I got on US soil and was past the parachuting out of the plane window. But I did get there and had an amazing weekend with my sister and family. It wasn’t easy (note to self: never watch The Impossible again – familial separation not good for mum with NICU-induced PTSD), but everyone back home was fine.

The Grumposaur did a great job, as I knew he would, looking after the Boos, and I came back refreshed. Just as well as I had to go back to work after over a year away the day after I got back.

Since then I’ve been thinking about respite of various kinds and how vital it is for families like ours. It doesn’t have to be a weekend away. It could be a walk on your own, a hair cut, time with your partner, or even just 5 minutes to drink a hot drink in peace, while it’s still hot. I am rubbish at making these things happen, but I now understand how important they are.

So here it is: what R.E.S.P.I.T.E. means to me.

R is for recharging your batteries. Every self-help book and magazine tells you how important this is. I’ve always been sceptical, though. But it’s true. No matter how busy you are when you’re away (and we were busy) it’s amazing how energising being busy in a way that’s different from your daily grind can be. Even with jet lag, I came back feeling like I could run a marathon.

E is for easy breathing. It took 24 hours, but once I knew everyone was OK and I couldn’t turn back I noticed my shoulders slipping down a bit, the headache I’ve had almost permanently for a year went and I remembered to breathe without reminding myself to do it. I felt like someone had cleaned out my lungs with a bottle brush.

S is for sleep. No glossing required.

P is for peace. Gosh I like silence. I used to spend big chunks of my working life in complete quiet, thinking, writing, getting irritated when people had the audacity to so much as sniff. Now life is noisy. Full of chatter, laughter and tears. A few moments of absolute quiet is amazingly restorative.

I is for I am still an I and not just a we, an us, a partner, a mum and a carer. I am still me. I am worth remembering from time to time.

T is for taking stock. Sometimes it’s so hard to remember how good life is until you stand back from it. I try to do this on a regular basis. It’s why I started Good News Friday on the blog. But I got a much better handle on all of this from 3500 miles away. I am a lucky lady. Sometimes I don’t think about things that way. I lack perspective.

E is for the excitement of coming back. Of holding them tight. That’s really what going away is all about, isn’t it? Returning home. To the things that matter most.

I’d love to know what does respite mean to you…

Good News Friday #7

I love Fridays. The weekend is a just a hair’s breadth away and I don’t have to work, so I get to spend the day with Mr Boo and to take Sissyboo to dance classes after school (although I could do without the burgeoning One Direction obsession). And we have Portage therapy in the mornings, which is fun. But increasingly as important as many of these things, is the fact that on Friday I get to take stock and write about the good things in our week and, hopefully read any good news you lovely folks care to share via the comments section.

So here’s mine…

Physio: I wrote about the unexpectedly terrific physio session Mr Boo had on Monday earlier in the week, so I won’t repeat myself except to say that it’s kept me smiling through a week that has seen me work until 11 pm twice to catch up with myself. Boo, don’t ever stop amazing me, OK?

Mr Boo went to hospital but wasn’t admitted: There’s no use pretending Saturday was a good day. It really wasn’t. Mr Boo decided to get a non-blanching rash on his leg during a weekend I was solo parenting while his Dad was away with work. Managing my anxiety and his poor sister’s was not fun, nor was watching him scream through blood tests. (‘Stop hurting my brother’, Sissyboo quite reasonably ordered the doctor.)  We had to wait hours for the results and ‘I spy’ got pretty tedious after 10 minutes. But the good news is he doesn’t meningitis again. Even Mr Boo couldn’t be that unlucky (surely?). Nor does he have leukaemia or any of the other horrible things they warned us of. They concluded it was probably a virus. I still think a reaction to the MMR vaccine he had last week is likelier. But really. Who cares? He’s fine and the rash has gone.

Finally, I had a fabulous day last Friday meeting two new friends. I would tell you that they are two amazing ladies, but since we had a conversation about how funny we find it when people say we’re amazing for just fumbling through the world of chaos we’ve been plunged into, I won’t. But I will say, because it is so true, that their little boys are fabulous. Two boys, both with very different birth stories, both with cerebral palsy, a little bit older than Mr Boo. I have chatted online in forums, the blog and on Twitter to parents of kids with CP. But meeting these lovely, determined and funny women (some of our dreams and hopes may have flown out the window, but our sense of humour has not) was a wonderful experience. For once, I didn’t have to worry what others might say or think when they saw Mr Boo or I talked about his challenges. We could just talk. Like normal people. Even if our lives might not seem normal to anyone else. This is our reality. It can be harsh and deeply depressing, but it also joyful and sometimes hilarious, even in its harsher and more depressing moments. I’m so glad to have met them.

OK. Over to you. I hope you might share some of your good news in the comments below. But as always, my main hope is that has been some good news in what in every other sense, has been a very bad news week.

Help is not a Four-letter Word

Of the three paediatricians Mr Boo sees I have a clear favourite. One is very professional and smart but a bit inscrutable; one thinks bedside manner is something you buy from an IKEA catalogue (enough said, really); but the third (a community paediatrician who Mr Boo will see for many years to come) is fabulous.

No one likes to be told there child is not where they should be developmentally even if this is glaringly obvious. But she manages to impart this news in a positive and reassuring way. For her, Mr Boo is clearly not just a case or a list of clinical puzzles and diagnoses; he is also, and above all else, a child with his own unique personality. And instead of dwelling on what he can’t do she emphasises not only what he can, but how remarkable it is, given his medical history, that he has accomplished any of these things. She sees his achievements and the positive possibilities that lie ahead. And when she said ‘We’re just going to throw everything we can at him to make sure he gets all the help he needs to maximise his potential’ I could have kissed her.
It goes without saying that I would do anything to help Mr Boo and his sister, whose needs as the sibling of a child with disabilities are slowly emerging. There’s no depth to my inner resources to advocate for my kids, I’ve found. So why is it I treat help like such a dirty word when the recipient is me?

I’ve always been this way. On the list of Boo priorities I have almost always ranked mine somewhere between the negligible and the non-existent. I prioritise everyone else’s needs and wants, not just those of my family and friends, but those of work colleagues, neighbours and even relative strangers. I don’t even use L’Oreal. You see in my mind I really am not worth it.

I say this not out of self-pity or to make you feel sorry for me. I say it in the same spirit of mild self-loathing that makes asking, let alone accepting, help difficult for me. I like to think I am compassionate to others. I was always the designated driver to nightclubs as a teenager, the one who wouldn’t drink, even though I am fond of a tipple, because I knew one of my pals would end up in the toilet needing someone to pull her hair back to avoid the inevitable vomit and to see her safely home. But if someone tried to do the same for me, I would be horrified. This is the woman who made her c-section scar bleed because of doing too much housework the day she came out of hospital after having Sissyboo knowing that her in-laws were coming the next day to help her look after her newborn. I never slept when the baby slept (fool!) and continued to do work on maternity leave when people asked me to do so even though I was unpaid and so tired I couldn’t keep my eyes open.

Although I would help anyone out in any way I could, I find the idea of someone helping me pretty scary, a sign that I am failing, yet another indication that I am not worth helping. I would never think this of someone else who needed or sought assistance. Just me.

Ok, you got it: I’m nuts. But I am high functioning in my nuttiness, at least. Correction: I was high functioning.

Having Mr Boo early put us all under a great strain. But it wasn’t until Christmas that I really realised just how fragile my grip on things was. When Mr Boo developed infantile spasms, a new devastating condition on top of the cerebral palsy we’d been told to expect, I was floored. Add on (because of the aggressive treatment) no sleep besides odd naps of a few minutes over a period of several months (on top of months of sleep deprivation prior to that), heavy weight loss because of his increased appetite and repeat hospitalisations, I really couldn’t cope.

I was living in a hall of mirrors: everything looked distorted to me. I couldn’t see straight and the ground felt spongy under my feet. My face hurt when I smiled. I was worried to laugh in case something bad would happen. Yes, everyone was fed and watered, but I was a wreck. I needed help. But I didn’t want it. I should have been able to manage better, I thought.

And then one morning things changed. I was walking around like a tetchy zombie, Sissyboo was crying and I couldn’t get her to put her school shoes on. I started shouting and Mr Boo started screaming because of the noise. I felt like the worst Mum in the world. I was failing my kids now just as I had failed them  by bringing Mr Boo into the world early with all the life-long complications he and we faced as a consequence of that day.

And then I realised I wasn’t a bad Mum. I was a struggling parent. And struggling wasn’t all that surprising giving what had happened to us in the past few months.

But here was the big revelation. I could be a better Mum. How could I help my kids if I wouldn’t help myself? I needed to be strong, but I needed support. It wasn’t wrong to accept assistance; it was the responsible thing to do.

So I found help. Well it wasn’t that easy, of course. It was absurdly difficult emotionally for me to see a GP, to be told I had severe reactive depression and anxiety and possible PTSD, that antidepressants and CBT were a good idea. The GP also thought there might be organisations that might help and asked when I was next seeing our health visitor. I told her we didn’t have one. I wasn’t sure I wanted one. I thought there must be so many more families deserving of help than we were. We were OK. But we weren’t.

When the health visitor came out to us as an urgent case 6 weeks later she provided all sorts of information about support services and groups. I resisted, knowing how The Grumposaur (still in denial there was anything wrong with Boo) would feel about it. But I kept glancing at the leaflets anyway and each time they seemed less threatening and more promising.

In the meantime the health visitor referred us to the fabulous Homestart who sent an amazing volunteer to us for a few hours a week to give me some respite and time to get on top of the many practicalities of daily living that were being routinely neglected. Now she comes to give me a little and much-needed one-to-one time with Sissyboo each week. I cannot tell you what it means to us. Support. Sanity. Solidarity.

And then I started to help myself. I started chatting to the amazingly generous and knowledgeable people on the Bliss message board and in the special needs section of the Netmums Coffeehouse. I asked for advice and shared experiences when I felt I had something useful to contribute.

And then I entered the worlds of blogging and Twitter, through which I have connected with people who put a smile on my face every single day and who offer a complete stranger, even one hiding behind a ridiculous pseudonym, friendship, encouragement and kindness.

I am not cured and I will never be a saint. I love my kids so much and am endlessly annoyed by my failings to live up to the ideals I hold out for myself. But I am more like the person I want to be now than I have ever been and that is because of the help I have received, because I have admitted that I needed it.

I sometimes don’t get to each lunch. I often miss out on a shower and have managed only one haircut in the last 13 months, but at least I know now that I need to look after myself a bit better. Because if I don’t look after myself, I really can’t look after the Boos as well as I want to. They’re worth it. And I think I might be, too.

Welcome to Premmieland: Where Little Things are a Big Deal

Let me let you in on a secret. I’m someone who makes mountains out of molehills. Small beans are almost always a big deal to me. It’s just how I am, but it’s something I’ve often been criticised for, mostly by kind folks who are trying to get me to stop worrying about the small stuff and see the bigger picture so I can go a bit easier on myself. It’s something I tried to cure myself of while pregnant  with Mr Boo. I wanted to be better able to put things into perspective before he arrived and inevitably made life more chaotic, as any new child does. (Little did I know…) But now I think I’m a completely hopeless case. I’ve just come to the conclusion that I see the world in a particular kind of way and my radar is too sensitive a lot of the time.

I’ve mentioned before how having a premature baby does very odd things to your sense of time. I was reminded today that it alters your sense of perspective in other ways too. You see, in Premmieland tiny things are a big deal. Quite literally. Our little ones make a big impact on our lives. In the early days (and for some, for many months afterwards) grams or ounces take on a huge significance and minuscule reductions in the amount of oxygen helping our babies to breathe takes a hefty weight from our shoulders.

It works the other way too, of course. Little things can shatter our biggest hopes and dreams. An almost imperceptible flickering of Mr Boo’s foot, for instance, signalled the onset of ankle clonus that first made me believe that he probably would have cerebral palsy given what else we knew about his medical history. And then the little hiccups that started at Christmas landed us with a diagnosis of a ‘catastrophic’ epilepsy, infantile spasms.

Now life is thankfully (mostly, fingers crossed) on a more even keel. But the little things still matter hugely and usually in a good way.

Like today. Mr Boo had his routine fortnightly physio. I wasn’t holding my breath about it, to be frank. He hadn’t slept well last night and was really grouchy when we got to the hospital. I thought, great: this is going to be yet another appointment where I say, ‘He does this better at home, honest, he’s just out of sorts’. But I didn’t have to. It was quite a shock.

The physio got out a new toy, you know one of those ones where you push, twist or punch buttons to get animals to pop up and then you push the animals back down again and the fun starts from scratch. Let me tell you, this is a really challenging object for Mr Boo. The dynamic tone in his arms (intermittent stiffness made worse by exertion) coupled with his difficulties in opening his hands makes working a toy like this about as tricky as it would be for me to juggle four balls. While jumping on a pogo stick. On a tightrope. Without a safety net. While desperate for the loo.

So when Mr Boo pushed a button, grabbed the animal that popped up and then pushed it back down again, all while in a sitting position (when he has much less trunk and arm control) our jaws dropped. The physio looked at me quizzically. We didn’t speak but I knew what she was thinking: ‘Didn’t expect that, but let’s not get too excited just yet. It might be a fluke’. I was thinking the same. But it wasn’t a fluke. He did it again and again. OK his arm movements were far from gainly and his hands were a little more fisted than we’d like, but this bit of play, an activity his older sister could do without effort so many months earlier than him, is HUGE.

I felt like I did when Sissyboo took her first steps at roughly the age Mr Boo is now. That day may or may not come for him. But I know there will be other days like this. And I’ll take them gladly.

That was no molehill we hopped over this morning. We scaled a mountain. And I’m dizzy from high altitude and pride. So much pride. Go Boo!


As the parent of any premature baby will tell you, anniversaries can be tough. We had a lovely party on Mr Boo’s birthday last month, but I found the run-up to the big day incredibly emotional as I thought about all that he’d come through and how far we all have to go. The Grumposaur found the day even harder and spent most of it away from the party displacing anxiety onto all manner of petty concerns. He fooled no one. Not even himself. 

Then there were the one-year-ons of a whole host of other days I wish we hadn’t had to live through: the anniversary of the day Mr Boo got sick; the day we found out about the brain bleeds; the day people started floating about words like cerebral palsy, developmental delay and so forth. You don’t have to be Brain of Britain to work out why I started writing this blog the week he turned one.

But today is a truly happy anniversary and nothing (not even spending 6 hours in hospital yesterday for a non-blanching rash on Mr Boo’s legs – great timing Boo!) will stop me enjoying from this one. 
A year ago today Mr Boo left the neonatal unit. He came home 6 weeks after he was born. He was 35 weeks gestation and weighed a little over the magic 5 lbs.
Of course every premature baby’s path through the NICU is different; different challenges are met and overcome, different questions are posed. But whatever these challenges are there are two questions every NICU parent asks: Will my baby be OK? When will they come home?
I asked the first question quite a lot. But I only asked the second question once. After I’d received the standard answer – we don’t know, but hopefully your due date plus or minus two weeks – I didn’t ask again. I guess I didn’t want to hear the answer or jinx things. Or maybe I just realised what an unfair question it was. They didn’t know. I just had to bide my time. 
But goodness neonatal units do the weirdest thing to your sense of time. Think complicated episode of Dr Who model of time and multiply it by 25. You can spend hours (and I mean hours) in the NICU just staring at your baby and it will feel like minutes. One day after 3 hours of looking at Mr Boo and only infrequently lifting my head to pass pleasantries with the nurses I was politely advised to leave and get a coffee and go to the loo. I honestly thought I’d been sat there for 10 minutes. On other occasions, a day will feel like a week, or the 2 hours waiting for blood results will feel like a day. Six weeks is not a long time to be in the NICU. We were very lucky. I swear it felt like 4-6 months, though.
But the last 5 days passed in what felt like 5 minutes. One day it was all doom and gloom, he’s still desatting badly with the reflux, you may be near the door now but you are a long way from home… The next day he stopped desatting and a new consultant came on who asked me if we were set up for him coming home. I thought he was joking. Even as they made sure I remembered how to bath a baby, draw up and give meds through a syringe and do CPR I couldn’t quite believe we were headed home. But we were.
On May 19 2012 I packed a change bag for Mr Boo for the first time ever. I never thought this could be an exciting activity. We put Sissyboo’s old car seat in the car and drove all together to the hospital. 
The unit was quiet that day and Mr Boo was alone in his room, accompanied only by a crackling radio playing a bad local station (they could at least have out on Pomp and Circumstance or something more suitable to the occasion). All I wanted, though, was silence. A world without beeping monitors and artificial light. A world where I didn’t feel I needed permission to look after my son, where my relationship with him wouldn’t be on show. I just wanted to us to be a family. Together.
Of course, it is worrying to bring home a new baby, especially one born in such difficult circumstances and with ongoing problems. But I’ve said this before and I’ll say this again: if you are in the NICU now know that whatever life throws at you subsequently it will be so much easier to deal with than when you are separated. 
Simple pleasures are so life-enhancing. At home you can cuddle your baby in bed (or your baby and his big sister in our case – thank goodness for king-size beds). You can get in the bath with them. You can just be. We were all broken by our experience of the NICU but are just about as together as a family could ever be now.
Thank you, Mr Boo. Thank you for being strong, for being a tough little cookie. Thank you for being the best son and little brother we could ever have hoped for. And mostly, thank you for coming home and for the happiest day of my life.

Good News Friday #6

I had fully expected to tell you in the (really-how-can-that-be?) 6th Good News Friday that my good news was that Mr Boo had been discharged from one of the gazillion clinics he attends and that I had got my work mojo back and was a model of professional efficiency. But none of that happened. Instead, I spent most of the week 1) getting mad about Collin Brewer (enough said by me about him this week on the blog and on Twitter, so I’ll spare you), 2) moved by the amazing blogs and tweets about International Kangaroo Care Awareness Day on Wednesday, 3) taking Mr Boo’s glasses out of his mouth, and 4) working until the middle of the night most nights to make up for time spent getting mad, moved and reuniting Mr Boo’s glasses with his ears when I should have been concentrating harder on the stuff that pays the bills. But there has been good news and this is the main one, for me: Mr Boo got his MMR immunisation. Now I know it might seem odd to be pleased that your child be turned into a pin cushion. But I cannot express the depth of relief and even pleasure I feel about this. For one thing, I’m just thrilled he could have it. By rights, Mr Boo should have had the injection at the beginning of April at 12 months corrected age. And being a ex-premature baby and a vulnerable one because of his ongoing health problems, this was even more important than it would have been had he been born well and at term. It was even more important still, though, because Mr Boo was put on high-dose steroids for his infantile spasms from late December until early February. (To give you an idea, he was on roughly twice the dose an adult with severe arthritis or chronic asthma might be given). This was good for the spasms but greatly compromised his already fragile immune system, as we can tell by the constant stream of nasty bugs he’s had since January (he was remarkably cough, cold, bug free before then). His epilepsy consultant told us when he was put on the steroids that if he came into contant with chicken pox, mumps or measles for three months (yes, three months) after he’d finished the steroid course, we had to get him admitted to hospital immediately. These childhood illnesses could kill him. No chicken pox parties for us then! But, and here’s another killer, the steroids that made him so vulnerable to these infections also meant he couldn’t receive any live vaccines. So, no MMR until 6 weeks after the date he should have received it. With the recent measles outbreak in the UK, I have been so worried that Mr Boo would come into contact with the infection before getting the jabs. I was worried that the ill-informed choices of others could lead to my baby’s death. I know that sounds harsh, but I am unapologetic. Babies should be vaccinated. It is not just for your own children that immunisations are important. We didn’t have a choice. My baby could have died. Getting Mr Boo vaccinated signalled the end (we hope, please, pretty please) of the steroid era and hopefully that he’s on the way to better health. My shoulders have rested half an inch lower since he had the injections. Good news, indeed. As always, if you have any good news, whether you are the parent, a parent of an ex-premature baby or of a child with additional needs, I’d love to hear your good news in the comments section here or on Twitter. Mostly, though, I just hope you have all had some good news this week!

Acceptance is Child’s Play; or a Coda for Cllr Brewer

I have been so angry this week, so saddened by the comments of Cllr Collin Brewer, who after previously standing down from his post for discriminatory comments about the disabled has stood again and been re-elected in Wadebridge East, Cornwall. And things have gone from bad to worse. His target now: disabled children like my son, whom he hopes might either be aborted on the grounds that public toilets might have to close to fund their care or be euthanised after birth like a deformed lamb smashed to death by a farmer for whom they are not economically viable.

Not much to be cheerful about there, then. Except there is. The huge outpouring of peaceful protests on social media and the streets, as well as the various petitions drafted and signed have lifted my spirits and reminded me how much stronger and pervasive love and compassion are than hate. If you need to see this for yourself just hop over to the amazing peaceful blog protest launched by the wonderful Hayley of Downs Side Up. I wrote my own post for this and am proud and humbled that a link for it sits alongside links to some of the most powerful and eloquent blog posts I have ever read.

I am just as proud of and humbled this week by my beautiful, healthy 5-year-old, who as I wrote in my post calls ‘disabilities’ ‘abilities’. This week she made a book about babies at school and devoted a page of each of a baby’s key needs as she sees them. She listed and drew nappies, clothes, milk, love and this:


This is her giving her little brother his anti-seizure medication. Actually I give him his meds, but I would struggle to find a more compelling visual depiction of love and acceptance than this. You could learn a lot from Sissyboo, Cllr Brewer.

This week she is my reason to be cheerful. And proud and hopeful.

How Kangaroos became my Favourite Animals

I love animals. I grew up with a menagerie of dogs, budgies, hamsters and rabbits. I volunteered to help at animal sanctuaries as a teenager and have been a vegetarian for 25 years. A few days ago Sissyboo (desperate for a dog we don’t have the time or lifestyle to look after properly) asked her evil no-you-can’t-have-a-dog Mummy what my favourite animal was. She expected me to say dogs and guilt me into letting her have one. And for most of the last 36 years ‘dogs’  would have been my answer. But since last year, I’ve had a new one: kangaroos. It surpised her, but probably won’t surprise many of you.

Today is International Kangaroo Care Awareness Day. I had never heard of kangaroo care before having Mr Boo. In my experience it’s one of the few nice things you learn about as the parent of a premature baby. In our first NICU I was given a leaflet by Bliss which gave lots of great advice on the apparently miraculous effect of skin-to-skin cuddles (better monitor readings and saturation levels; the promotion of intense bonding between parent and baby). I struggled to believe it or understand how a baby on a ventilator could be safely removed from their plastic box, but was enthusiatic to try, to try to hold my baby.

When Mr Boo was a few days old, we were all set to give this a go and I was so excited as I drove to see him that morning. But when I got there I found he was ill with suspected meningitis. He was far too ill to be removed from the incubator. Then, almost as soon as he recovered, he was whisked to a NICU nearer home (he was born 65 miles from where we live). Sadly, our local hospital did not actively promote kangaroo care. I asked about it and just kept getting a response of ‘soon’. Mr Boo had started to desaturate badly after feeds (it turned out to be severe silent reflux), they thought it wasn’t a good idea. I agreed it probably wasn’t, but my heart was heavy.

And then one day, an experienced NICU nurse called Sally who’d been on leave for the previous week came on duty and talked to me about the gruelling expressing schedule I was on (every 3 hours all through the day). She asked me if I wanted to breastfeed Mr Boo. I laughed and then realised she was being serious. And then she asked me how kangaroo care was going. She was appalled when I said I had been told to wait. She said there was no reason to. Mr Boo was on Optiflow but he would be fine out of the incubator for short periods and his sats might just improve, she told me. She said if I wanted to try to breastfeed, although it might not work of course, I should start kangaroo care now.

All those weeks of missed cuddles. I had to make up for them.

I did!

At just 32 weeks gestation, 3 weeks after he was born, I had my first skin-to-skin cuddle with Mr Boo, thanks to Sally. It was magical. He didn’t desat. In fact, his sats improved immeasurably just as she’d predicted. Not only that, but to our great surprise he started to root around and attempted in his tired, 32-week way to breastfeed. ‘They’re not supposed to have the suck, breathe, suck reflex at this gestation,’ Sally said. ‘But these babies don’t read the manuals or they wouldn’t here in the first place.’

3 weeks later, we left the NICU with an exclusively breastfed baby. He still was 10 months later, I only gave up so I could go back to work (and drink more coffee!). I never expected to breastfeed Mr Boo (I managed just 6 weeks with his healthy, term sister) and feel far too much pressure is placed on women to breastfeed whether their babies are prem or not. But kangaroo cuddles created a bond between Mr Boo and I, regardless of the feeding, that is stronger than I could have imagined.

Sadly, I don’t have any pictures of me doing kangaroo care. The Grumposaur was away with work for 7 days the week I started and came back with a flu that left him unable to see Mr Boo for another 2 weeks. So no one was there to take pics of us, but the memories will never fade. And Mr Boo’s favourite way to sleep even now at 13 months is still his kangaroo cuddle.

If you’ve read this blog before, you’ll know I blog anonymously (no one who knows me knows I write it) and I don’t usually post pictures. But this is a very important day, so I’m making an exception. Here is Mr Boo a couple of weeks after coming home and 3 before his due date.


Kangaroo cuddles don’t have to stop in the NICU! I hope you have some with your babies today wherever you are.

Further information:

If you would like more information about the benefits of kangaroo care to parents and babies, please visit: Best Beginnings: or Bliss: