Monthly Archives: October 2013

The Impossible Hug

Last night I watched a wonderful short video that Bliss has produced with the advertising agency Langland to mark World Prematurity Day on Sunday 17 November. It’s called The Impossible Hug and you can watch it here.

Please watch it. Because in 42 seconds you will get a glimpse into the world of heartache experienced by the parents and families of the some 15 million babies born prematurely every year who can’t hug their children for days, weeks or even months.

Before I had Sissyboo, almost 6 years ago, I was worried about holding babies. They all looked so fragile. What if I dropped them? What if they smelled my fear and wriggled away? What if they screamed? What if I did? Well I could always give them back to their folks, I reasoned. But not when they were mine…

Before having my daughter I was apprehensive about holding her, of looking like a novice in front of midwives. And then I went into labour, she stopped breathing and all I wanted was for her to be out, to be safe, to be with me where she belonged. Our first cuddle was nothing like I’d imagined. I only had feeling in part of my body from the spinal epidural I’d had for the c-section and she looked like she’d been in a vicious rugby scrum. But the apprehension had gone. It was wonderful.

When Boo was born, I soon realised that my initial apprehensions about hugging his sister were a luxury: the kind of nervousness you feel knowing it’s only going to be temporary and you will take the plunge and it will all be OK. There was no room for luxury or emotional self-indulgence with Boo.

Seconds after he was initially put on my chest post delivery, bloody, translucent and spindly, he was intubated and taken away from me. I wouldn’t see him again for more than half a day. What I didn’t know then was that I wouldn’t be able to hug him for days. And the ache of loneliness and uselessness I felt as I longed to cuddle my boy, to tell him we loved him, that all we wanted was for him to come home and for us all to be together as a family was excruciating.

The NICU encourages physical contact from parents early on. From the day after his arrival I did his cares and had to learn how to clean a baby’s eyes around hats and ventilators, how to change nappies around lines, how to touch downy skin so fragile it wasn’t ready to be touched and all through two little holes in the side of a box. It felt like bomb disposal work.

But on day 2 I left the NICU having been told our first hug could be on the agenda soon. I left elated and sped the 55 miles to the NICU the next day only to find that Boo was dangerously ill. He was having a septic episode. He might not make it. This blog is about that journey from prematurity and meningitis to cerebral palsy and epilepsy, so I won’t rehearse it here.

Suffice it to say that his recovery was a miracle. He fought and fought and with excellent medical support and a heap of luck he won. There were prices to pay but the reward – my beautiful, cheeky, amazing boy – was beyond value.

And one day, day 10, I got a taste of how good our new life would be. Because what seemed impossible the day before became possible. This happened:

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Kangaroo cuddles were still some way off (you can read about them here) but this was one magic moment I will never forget. No apprehension. No fear. Just love.

Please get involved in Bliss’s Impossible Hug campaign for World Prematurity Day by sharing a photo of you, your friends and family and little ones giving a hug with them on Facebook, twitter and Pinterest, or email your photos to mediateam@bliss.org.uk and they’ll post them on their special World Prematurity Day Flickr page.

The Juggle of Modern Motherhood: A Day in the Life

I would have heard the news today but, oh boy … I was kind of busy. It went something like this…

5.55 Why am I awake? The alarm is set for 6.29 (yes, I’m odd like that). I usually wake 5 minutes before one of the kids does in a spooky they’re tied to me by invisible elastic way I’d never have believed was possible before having children. But I can hear Boo snoring. So it’s not that. Come on, I think, go back to sleep. It’s a lie-in day today. Boo has an appointment at 9.00 so no really early start to get to work. No commute. That’s it, close your eyes. Ahh… Bliss.

6.00 The fun begins.

Sissyboo [in scary, raspy, whispering, indignant voice]: ‘Where’s the IPad?’
Me [grumpily]: ‘Sissyboo, it’s 6 o’clock, I can’t even remember my name let alone where the IPad is’.
Sissyboo: ‘Your name is Mummy and I need to watch Tracey Beaker’

Brief internal monologue begins about how I’m going to be a better parent today, not let my daughter watch the IPad in the half an hour before I get up. I lose the argument with myself. First compromise of the day.

Me: ‘Check by Daddy’s side of the bed’.
Sissyboo: ‘Got it.’

6.02 Close eyes.

6.03 Woken by thumping of 6 year-old daughter/wanna-be elephant plodding down the stairs.

6.04 Close eyes

6.05 Boo wakes. He sounds happy. Bless. Close eyes.

6.07 He’s not happy. Get up, trip over books Sissyboo put on the landing before locating the IPad. Don’t look at the ceiling so as not to see those cobwebs I’ve been meaning to dust down/vacuum up for a few days. OK, I mean a few weeks. Alright, a few months. I told you, I’ve been busy…

Get Boo and take him to our room for snuggles before getting up. Close eyes. Baby Hulk, I mean Boo, whacks me in eye. Open eyes. Close them again. Boo whacks the other one.

Repeat on loop until 6.19. Ouch. Oh well, the alarm’s going off in ten minutes. May as well get up.

6.19 -7.15 Breakfast for kids and us. Find a chair Boo is happy/posturally sound enough to sit in while we get things ready to eat and empty dishwasher. Ask Sissyboo at least 30 times what she wants before getting a ‘totally, definite’ response to waffles in a lull in Tracey Beaker. And then she changes her mind… I get indigestion while eating my muesli, while picking up the Fisher Price eggs Boo keeps dropping on the floor and making their cereal and crumpets, drawing up medicines and making a bottle, while practising counting in 5s with Sissyboo. 85, 90, 95… I must buy some Dycem to stop him chucking him toys around due to his lack of arm control, I muse. I have been meaning to do that for weeks. It’s on the to-do list. But the to-do list is so long it’s about to trail out the back door.

7.15-8.15 Feel smug that I packed everyone’s bags last night, did all school admin etc. Then I remember I’m an idiot and I need to take an extra change bag for hospital visit before nursery (for which we have a different bag) in case Boo vomits/fills nappy/drools like a hungry Scooby Doo, or needs toys because our appointment is running an hour late as usual. Go upstairs to sort that out. Curse my disorganisation. Trip over the books again. Don’t look at cobwebs. Check to see if Sissyboo’s toothbrush is wet and that she really has brushed her teeth like she said she did (regular Miss Marple me). It isn’t wet. I ask her to do it again. ‘I am practising my numbers’, she says. ‘You can do that with clean teeth, too’. Pre-teen grunting ensues.

Go back downstairs. Kids dressed. First major exercise of the day completed. Who needs Zumba when you are trying to clothe an 18-month old with quadriplegic cerebral palsy. The Ipad has run out of puff. Shock horror! Sissyboo is putting her shoes on the wrong feet as a protest, claims not to know where her Tangleteezer is and asks for ‘Polly-dolly bunches’ for school. Boo has vomited his Epilim (anti-seizure meds) all over his clothes. It’s cherry red. No mother worked on the colouring of this medicine. Go back upstairs to get another set of clothes for him. Trip over books. Again. Don’t look up at ceiling. ‘We are going to be late’. I will utter this at least 45 more times in the next 3 minutes.

08:00 Head off for the school breakfast club. On 6th attempt we actually make it out of the door with all necessaries in tow. Pass the lovely lady at the corner shop who stops us to ask if Boo is walking yet. I cry inside. I should just tell her he may never walk, but it seems selfish to say something to make life easier for me which will make her bad for being unwittingly insensitive. Hope she won’t ask next week. I know she will. She always does.

08:20 Head for hospital. Entertain Boo (and staring folks in the waiting room) by pulling faces for the 30 minutes we have to wait as things are overrunning. Appointment OK. Lots of plus points; but lots of causes for concern, too. Struggle to work through the emotions. Given homework for Boo (more and different exercises) and for me (equipment to source and purchase and things to talk to nursery about). Heart sinks.

10:00 Head to nursery with head still in appointment. I have to finish to get Sisyboo at 15:45 today, so it’s a short working day. Hope drop-off is painless. Boo grins like crazy as we go in the building. Try not to catch eye of manager in office as walk past as I’m in a hurry. Fail. Have a nice chat about Boo’s progress and a not-so-nice chat about his non-progress. Put best positive spin on things. Finally say disingenuously, ‘Mustn’t keep you’ and head upstairs. Boo still grinning. Go into room. We see his beaming and lovely key worker. Boo beams back. He is such a flirt.

Hand him over. His bottom lip goes and the wailing begins. Try not to let it bother me. After all, it has happened most days he has been there for the past 6 months. Die a little bit more inside. Put on brave face. Make for hasty departure. But Boo’s care plan and IEP need updating and signing, apparently, can I do it now? Well, it’s not like I’m busy, so sure. And I know it’s important. So of course, I do it. More conversations with keyworkers about his progress/non-progress. Brave face starts to crack. Must. Not. Cry. Can hear Boo screaming. Need to go. Have to work. I hate this.

10:45 Get home. Want coffee. Need coffee. Need a hug more. Decide no time for either as so pushed to get work done. Head down. Crack on. (Don’t look at the pile of laundry that needs putting away, ignore the pile of post that needs addressing, the light bulbs that have needed replacing for weeks, the floor that badly needs mopping. Working from home ain’t all it’s cracked up to be, even though it’s been a lifesaver since having Boo.)

11:15 Set to work.

11:16 Phone rings. It’s Social Services updating me on equipment order. Good news. Happy to hear it. But need to get off the phone. Too much to do. Asked if I’ve chased up another person who Social Services OT wants to speak to. Irony is that this elusive individual we’re talking about is the person whose job is to liaise between all people involved in Boo’s care. We laugh at how silly it is that she is the hardest person to track down. Promise I’ll call her and email her again and pass on the OT’s details. Heart sinks further.

11:45 Head down. Crack on with work. But my mind is distracted and still in the appointment. Start thinking about the major household adaptations that I just discussed with the OT on the phone. Don’t want to think about them. Can’t stop thinking about them. Need to get back to work.

I know. Check Twitter. Ah, tweeps are lovely. Ooh someone says they left a comment on the blog. Go check that. Can’t let that go unanswered. Write reply.

12:10 Get back to work. Stomach rumbles. I need lunch. I don’t have time for lunch. Oh better write that email to that woman Social Services talked to me about. And I want to write a blog post. Maybe I’ll feel better if I write a blog post. No, 30 minutes more work. Those deadlines are not getting further away.

12:15 Phone rings. One of Boo’s Consultant’s secretaries is phoning to arrange an appointment to talk through in person what I’ve already talked through on the phone with another consultant. So, you know, I think that constitutes talking to a person. I ask if it’s really necessary we have the appointment. I’m told it is and given an appointment slot. It’s on Friday at 10:30. Two days notice, because I have nothing else going on in my life. (Bear in mind they sat on these results for 6 weeks!) And on a day when I can only work a morning because Boo’s Portage is at 13:00 and for which I have to pay for a full day at nursery. I ask for another time slot because I work. I’m told that there isn’t one. Clear implication is I shouldn’t work. Thanks, sister. ‘OK, we’ll take that appointment’. Heart completely sunk now. Another night will have to be worked through.

13:00 Grab a piece of toast and eat at desk while working.

15:45 Get Sissyboo. Look down at my feet in the playground as I’m feeling a bit fragile and don’t want people being kind to me. I’ll cry. Notice I am wearing blue socks (The Grumposaur’s size 13 socks on my size 6 feet as I couldn’t find any belonging to me without holes in) and black Alice shoes. Don’t look at feet. Look at coat. Curses. It has Epilim vomit on it. I don’t belong in this playground of immaculately and expensively dressed, mainly non-working Moms. Sissyboo comes out and gives me a great big hug, which makes it all OK. And then we get Boo. These are the happiest moments of my day.

16:15 Sissyboo wants to make a cinema out of a shoe box. I say fine. She won’t do it alone. Grrr. Boo needs physio and 30 minutes in a standing frame. They both need dinner. I make dinner, help craft a cinema out of a shoe box including a popcorn stand, all while singing nursery rhymes to Boo in his standing frame and picking bits of pasta he’s thrown off his tray off the floor. I get told my popcorn doesn’t look very realistic and am asked to do it again. Everyone’s a critic.

17:00 Dinner time. The house has turned into a bombsite. Quickly check work email while going to the fridge to get two Frubes for their pudding. I have had 70 emails since lunchtime. 10 are about Boo. 60 are about work. 20 need nearly immediate attention. One asks for a 2000 word report for a committee meeting by 08:00 the next morning that on of my allegedly too busy (childless, glamorous, gallavanting) colleagues can’t do in time and I am ‘such a can-do colleague’ they know I won’t ‘let them down’. It was sent at 16:49. After they’re in bed, I think…

17:20 Right, one lot of physio at nursery during Boo’s one-to-one doesn’t cut it in Boo Land. He needs more. So we need to fit in half an hour of physio while doing Sissyboo’s violin practice and her sounds of the week. Good job ‘Twinkle Twinkle’ is multi-purpose. Music to learn the violin and do physio/speech and language and fine motor therapy to.

18:00 Bath time, aka break my back again time. Boo enters the witching hour and becomes a banshee. Sissyboo, ditto. She won’t do anything I ask her to (toilet, teeth, undress…). It doesn’t help that I am so tired that I can’t even remember what it is that I need her to do. Contort my body into the strangest position to bath Boo without him drowning. Stop him eating bubbles. Wrestle to get him and his sister dressed. Milk, draw up medicine. Groundhog Day.

18:30 Give Boo milk while he tries his level best to pull out my remaining hair (I wouldn’t mind if he got the grey ones), while listening to Sissyboo read. Try to settle Boo. Read Sissyboo another story in bed. This should take 30 minutes. It doesn’t…

19:30 Stagger downstairs feeling knackered. Quick triage on the explosion of toys/therapy aids everywhere. Put laundry away. Wipe kitchen surfaces. Load dishwasher. Somehow get together a meal that can be prepped and on the table in 20 minutes. (Thank God I’m vegetarian and such things are possible.) While dinner is doing its thing, start on those emails. Oh lordy, there are 30 more now. And a ridiculously precious and anxious phone message from a colleague about a ‘terrible problem’ that seems just about as insignificant as the most insignificant thing I can think of. Sort it out in one email that took 3 minutes to write.

20:00 Eat. Like the Hound of the Baskervilles. Should I have a glass of wine? I have a lot of work to do. Yes, I will have a glass of wine. This is going to be a late one.

The Grumposaur wants to watch Breaking Bad. So do I. Or the second series of The Killing. Or an episode of 30 Rock. Surely I have time for an episode of 30 Rock. Without the 1000 ad breaks it has in the States it lasts 20 minutes. But I don’t have even 20 minutes.

20:30 Start work.

22:30 Stop work. Look at Twitter. Want to chat to people. Want to blog. Can’t.

22:45 Start work again.

23:45 Stop work. Pack bags for next day. Check what appointments we have, if school letters have been answered.

23:58 Go upstairs. Trip over the books again. Turn off the light so I can’t see the cobwebs. I will tackle the cobwebs tomorrow. And the work I didn’t finish today, and the next lot of laundry and the therapy homework and go for a run (I need running back in my life), oh  and organise the 2 years overdue eye test I need … Oh stop thinking about it all, for the sake of all things sanity bearing.

23:59 Is the Grumposaur asleep? Yes. Good. Hide under the duvet in case. Write this post.

It rarely is any other way.

This is my entry to the Mum Network Trusted Blogger Club Autumn Blog Carnival

And, honestly, this really did all happen in one day.

 

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When Will There Be Good News? Good News Friday #28 and#29

No, this isn’t a how much I love Kate Atkinson’s novels post. Although I do. Nor is it a how much I love Jason Isaacs post. Although I do.

No, this is a ‘I-so-sorry-I-haven’t-managed-good-news-Friday-for-a-few-weeks-(again)’ post. It’s not that I haven’t had good news to report, although I have been having a bit of trouble seeing it, admittedly. It’s just that I keep running out of time to blog about it. Blogging is always something that happens in the margins of my life. And over the past few weeks (diagnosis, regressions, too much work yada, yada, yada) life has been squeezing those margins harder than ever and the blog is losing out.

So, I’ve been thinking very hard about whether to keep Good News Friday going. After all, this is a deadline I set myself, not one someone else (someone who might be paying me) has set me. So why pressure myself? I have enough real deadlines to meet.

Hmmm. Well I’ve thought long and hard about it, and although I know that the four lovely people who read this blog probably won’t care, I think I do.

You see, Good News Friday is important to me. It’s not the content, really, that matters. It’s more of symbolic value, if that doesn’t sound pretentious. Good News Friday has been a sanity saver in recent months, allowing me to see things differently in weeks when, believe me, that’s no mean feat.

But more than that, Good News Friday is kind of what I think Premmeditations and my life in general is about. Yes, life is hard sometimes. But my life, our lives, are not a bad news story. The life of the Boos is a good one. And part of the reason I know how good we have it, is because I have had glimpses of how bad it could be and how bad it is for many other people much or even all of the time.

So I may be out of kilter. This may be a Good News Friday on a Sunday evening (when I know no one reads blogs), but we don’t do things the conventional way here in Boo Land. And GNF is here to stay.

All about Me (a Meme)


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Sometimes I think this blog is all about Mr Boo or forces beyond our control. Sometimes I think it’s all about misplaced guilt. Sometimes I feel it’s all about me. It’s all of those things. But often I feel it’s more me than any other public representation of me…The me who chats about inane nonsense in the playground, or who makes small talk in the hospital waiting room, or the me in meetings at work.

But for a blog which is at least partly about me, I keep some of my cards very close to my chest. Sometimes I am tempted to show my hand, but I usually have to be cajoled. I’ve done a Liebster post – actually I have done two – which I’ve really enjoyed, and since I was asked to do so by the lovely Mummy Zen and the terrific Woman Unadorned … well, I couldn’t say no.

And then the fabulous Orli at Just Breathe put me in her meme list for ‘All about Me’, originally created by Gina over at Cold Tea and Smelly Nappies (a blog I hadn’t read before but regularly do now). Now, I find it hard to refuse Orli anything because she is marvellous, kind and very witty, even though she is still waiting for me to find some time to meet up for coffee. One day I will have a day without appointments and work. I just don’t know when that will be…

In the meantime, here are my answers to the meme questions, with a list of a few folks I’d love to know more about, if they feel inclined.

So here goes:

1) First off tell us your name and what you do (nice easy one there)…

Not so easy for me. You see, I blog anonymously. Only a couple of people know about the blog and none of my family does. I go by Mrboosmum in the blogosphere and, although it doesn’t exactly trip off the tongue, I’ve come to quite like it. If you don’t, feel free to make up your own name for me. I’m like the pooch in Annie; I’ll answer to most things.

As for what I do, well, I work in Higher Education. I’m also an amateur physio, OT, SALT and conductive education and hydro- therapist, general household administrator and knackered. When I attempted to draw my life for a Story of Mum Exhibition, it looked like this (the dolls have better legs, by the way):

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2) I live at home with…

The Grumposaur, my partner for 19 (gulp) years and the fabulous Sissyboo (very nearly 6, as she keeps reminding me), and Mr Boo, our 18 month-old bundle of trouble.

3) My favourite thing to do is…

I take it that downtime with the kids  (doing crafts, going places, doing nothing with them) is a given. My other favourite thing is reading. I rarely do this for fun any more. Can I hear an ‘awwww’? Oh and sleep. I am particularly fond of sleep.

4) My favourite thing to eat is…

Well I’m vegetarian, but love most styles of food. Italian is probably my favourite and you can’t beat a good melanzane parmigiana. A hug in a bowl

5) When I get cross I…

I let it lie for a bit and bottle it up. Then the next time I get cross I get crosser and either cry, raise my voice or walk out the room for a few minutes. Then I feel awful for about 3 days.

6) Sometimes I worry because…

Oh brother. Where do I begin? Boo’s disabilities produce a whole heap of worries and I worry about their impact on his sister. I guess my main worry is that I am spread so thinly that I don’t do quite enough (therapies for Boo, normal stuff with his sister) to do right by either of my kids. And I worry what would happen if I get run over by the proverbial bus.

7) My favourite book is…

Jane Austen’s Persuasion.

8) My favourite toy is (easy now)…

Predictably, but truthfully, it’s my iPhone. I blog on it (like this post, in fact) I use Twitter and Facebook on it, I read medical research and read about therapies and equipment for Boo and play games with Sissyboo on it. It makes me feel connected to others and allows me to procrastinate. It also drives The Grumposaur barmy.

9) I dislike…

Injustice and egotism.

10) When I grow up I want to be…

A more capable version of myself.

The folks I’d like to nominate to pass on the meme are:

Sara at mumturnedmom

Kyla at sheetsoflightning

theaandnatesmam

Only if you’re time and feel like it, of course…

Ready, Steady …

I didn’t write a Small Steps Amazing Achievements post last week. I couldn’t. Nothing amazing. No achievements. Some days I consider getting out of bed and managing to crawl back into it some time before the next as an achievement, but that wouldn’t make for an interesting blog post, would it?

But it was worse than that. I felt/have been feeling that things were going backwards with Boo. Achievements were vanishing before my eyes. In particular his sitting (he can’t sit independently at 18 months old but he had looked like he might in the next few months) looked further away than ever. He was/is floppier in his trunk. This will make me sound awful, but I was hoping he’d get a temperature so I could pinpoint an illness as the cause of this regression and look forward to it passing.

But he didn’t. He has, however, had a growth spurt recently. Quite a massive one judging by the trousers that look comically short on him now. That could be it. Please let that be it. But whatever the cause, the effect is the same. No progress or even plateau, here. No achievements at all. We’re playing the two steps forward, three steps back game again. And I don’t like it.

So with tail between my blog’s legs, I tweeted Jane last week to let her know that there was no post for the linky that week. She reminded me that Sissyboo can and does achieve things, too. She does, of course, but I couldn’t find anything to report there either. And then I was chatting to one of the lovely bloggers over at Tough Little Cookies and she put things into perspective. She asked me if there were other gains that might account for Boo’s losses. And then she reminded me that he is still so young. 18 months actual, 15 months corrected. In her words: ‘the story isn’t over yet’.

Between her and Jane I had a bit of a wake-up call and have been reminded how much my own state of mind can affect perceptions of what’s going on around me. I tend to think that I feel low and embattled when things are going wrong with Boo. That does happen. A lot. But if I can’t even see the marvellous things Sissyboo is getting on with, then maybe things are wrong with me. With how I’m seeing things. It’s probably a bit of both, truth be told. Boo is in a rut and so am I.

I’m not out of it yet, but for the past couple of days, I feel like I can peer over the top at least. The catalyst was Boo’s first SALT (that’s speech and language, for the uninitiated) appointment. Boo has lots of sounds and vocalises a lot. He doesn’t say yes or no, but communicates both through laughs and gestures. He says ‘Daddy’/’Dad-da’/’Dad’ a lot and although he seems to be a little more indiscriminate in his use of the word than we’d like, if you say ‘Where’s Daddy?’, he looks straight at The Grumposaur.

But who knows what Boo’s CP will do to his speech. I have been warned about the possibility of him having to use communication aids and of him potentially having learning difficulties. As with so many aspects of Boo’s development, we just don’t know.

So I went to the appointment with a mixture of pride that there he making sounds and vocalising –  that he says ‘Dad-da’ ‘Oh dear’ and occasionally ‘hiya’ – and fear of the therapist’s verdict.

The first game she played to test Boo didn’t go well. She sat opposite him said ‘Ready, Steady’ and then paused waited for him to say ‘go’ before she would pass a ball to him. Well he has a ‘g’ sound but he doesn’t say go. That said, he knows what ‘ready, steady’ means (we use it at home and they do in conductive education, too) and rather than say ‘go’, he just giggles and squeals in anticipation while waiting for whatever is about to go to get gone. He then had to pass the ball back to the therapist, but only when she said ‘go’. He got what the game was about instantly, but he has quad CP. Balls skills are not high on our list of current achievements.

Then she gave him a succession of two cards to choose from. So she would show him ‘ball’ and ‘doll’ and ask him to pick ‘doll’ in the hopes he would grab the correct card and post it in the letter box. Now I don’t like repeating myself, but he has quad CP. Picking up thin bits of paper and holding them is one thing. Trying to then move his arms with sufficient dexterity to twist them round to a post box and put them through a small slot is like asking the Grumposaur to thread an embroidery needle.

It wasn’t her fault. She had never met Boo before and after he’d given her enough ‘I didn’t think I was coming to a physio session today’ stares, she made the physical aspect of the game easier so his cognitive abilities might be clearer to her. He just had to reach out for the paper and then we held the box under it for him to drop it into.

And now… drum roll … here’s the small step we’ve been waiting for and it really was an amazing achievement, even though it didn’t surprise me.

He got every one right. Every. Single. One. In a game that went on for a good 5-10 minutes.

Now, I know this doesn’t mean too much. The speech therapist said she would like to know if he could do more complex recognition (such as the difference between a card showing a boy swimming and one showing a boy jumping) but he is only 18 months old (15 corrected) and I know lots of toddlers who couldn’t do that. She wants to start a communication board for him and my homework is to think what I would like him best to communicate so I can set one up. (Since I understand him pretty well, this is hard, but I think a clear ‘yes’ and ‘no’ would be good.) She said it would be paving the way for communications devices down the line if we needed them.

But I am optimistic that Boo will communicate verbally. He is already. The only room for doubt at the moment is that his understanding is clearly much better than his expression. But it was like that with my daughter, too, and she is a very articulate little girl.

That he has this level of cognitive understanding is a big achievement for Boo. This appointment happened just a few days after seeing the words ‘severe brain damage’ in black and white on the neurologist’s report. Anyone who has read this report or seen one of Boo’s CT scans before meeting him does not have high hopes for him. Even through her wonderful manner and terrific kindness, I could see that the therapist’s expectations were not high. She was cautious about his long-term development. That’s her job. But I could see she was pleasantly surprised by Boo’s engagement with the world around him and particularly with his understanding and the range of sounds, if not words, he makes.

As for me? Well, I was proud as anything. As I always am. One day we’ll get that ‘go’ and there’ll be no stopping him! ‘Ready, steady…’

 

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RSV and the Silly Season

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It’s the silly season: Halloween, bonfire night and Christmas are all upon us. And with that comes about 1000 requests a day (more or less) from Sissyboo’s school for gifts, cakes, volunteering, costumes and … oh I can’t finish the sentence because I feel queasy now.

It’s also cold and flu season. More to the point for former premmies and medically compromised kids like Boo, it’s RSV season. Until March next year. That’s right people. Until March.

RSV… I’ve said before that after having Boo I entered by own private hell of acronyms. In the NICU (acronym #1) I had to learn about the dangers of NEC and CLD, the problems that can attend NG feeding and the TPN that can help to alleviate them. Then we experienced the horrors of IVHs and the CP and IS they led to.

When we finally got Boo home, though, the one acronym I’d been told particularly to fear was RSV (CP and IS were just beyond the horizon in those halcyon days). I cannot tell you why I hadn’t heard of RSV before. I’d  probably had it, after all, as had my partner, daughter and most people I know. That includes you. You’ve most likely had it. But have you heard of it?

No? Well you should have. I should have. Because these three little letters can cause a whole lot of trouble for premmies and anyone with suppressed immunity or underlying health problems such as asthma. In most people like you or me when we get RSV we just feel a bit rough for a week, take a painkiller of choice, drink tea and carry on as normal.

For kids like Boo it can cause a raft of other illnesses and frequently leads to hospitalisation, breathing difficulties (sometimes very severe) and, in some cases, necessitates ventilation. It can produce a heap of complications such as pneumonia or long term lung problems such as the bronchial hyper-reactivity Boo now has.

In the US, many preemies, especially those born extremely early (or micropreemies) are put on RSV lockdown or isolation. Trips out of the house are only allowed to certain locations and have to be planned with great care. There are many preemie parent bloggers who have great advice on dealing with an ordeal I only have had a glimpse of during the months Boo was on steroids. I nearly went mad. There is no equivalent recommendation in the UK to the lockdown encouraged in the US beyond being cautious during RSV season. How very British…

But that’s why we all need to know about RSV. Because we need to help those whose bodies can’t fight it by behaving responsibly when we might have it and not even know it.

RSV stands for Respiratory Syncytial Virus. If you are otherwise healthy and you get it you will likely think you have a bad cold or mild flu. You will have a runny or stuffy nose, a headache, a sore throat and a cough, maybe with a fever. You likely won’t need GP treatment and if you do go to the GP they probably won’t test for RSV (the test is done via a nasal swab) as it should clear up of its own accord and being a virus it doesn’t respond to antibiotics.

But, and this is an important but, RSV is highly contagious through cough splutters and sneezes. It lingers on hands, clothes and door handles or pretty much anything you touch with unwashed digits. And that means you could unwittingly pass on something that makes you feel a bit out of sorts to someone for whom it could be utterly devastating.

When we left the NICU last year, I left with the fabulously useful pack provided by the wonderful charity Bliss, which helps babies born sick or too soon. One of the leaflets in the pack was about common winter illnesses. It contained helpful advice on RSV diagnosis and prevention and you can download it here.

I found out subsequently that in the US you can get an RSV immunisation and I asked Boo’s most unhelpful consultant if there was any equivalent here. He told me no and it was likely an ineffective vaccine anyway, although to be on the safe side, Boo should have a flu shot. By the way, the flu shot does not prevent RSV at all. Have I used the word unhelpful in this paragraph yet? Let’s try useless this time. He was/is useless.

In any case, I quickly realised that prevention was clearly going to be the best form of cure as far as this little viral blighter was concerned and it was not necessarily going to be easy given that Boo’s big sister was at a large nursery.

Yet the answer to the question of how could we help prevent Boo catching RSV was so simple that even my then 4-year-old could understand it. I won’t put it in capital letters in case it looks as though I am shouting (although I would stand in the high street with a tannoy if that would help): Wash. Your. Hands.

We made every visitor who came to the house wash their hands. We had antibacterial hand gel (not as effective as hand washing but more acceptable to some, it seems) by the front door and used it liberally ourselves in between hand washings after touching our faces and before touching Boo. We stayed away from him when we had colds and I washed door handles etc. when I remembered to do so (I wasn’t obsessive about this, no matter how this post makes me sound, but I was diligent).

Some people (usually medical folks coming to the house I must say) bristled a bit when I suggested they might wash their hands (especially the health visitor, who came in with a stinking cold, sneezed into said hands and went to touch Boo’s arm) but most were fine about it.

And then Boo got infantile spasms. He went onto a brutal but effective course of high-dose steroids to stop the devastating seizures and needed daily monitoring for blood pressure and blood sugar rises resulting from the medication. The NHS guidelines were that these checks should be done at home by a community or epilepsy nurse as Boo’s immune system was so suppressed by the steroids that taking him into a germ factory, I mean hospital, was not a good idea.

But our hospital has no epilepsy nurses and the consultant who usually manages these protocols was on holiday and the person in charge demanded we make daily trips there … With a baby having multiple seizures a day…. And each day for 5 days (I am not kidding) we ended up in the Children’s Assessment Unit sat next to a child with bronchiolitis (a common side-effect of RSV) or RSV itself.

So guess what? Boo got RSV and bronchiolitis. And he was hospitalised for a terrible wheeze and we were put in isolation. Unless a nurse could be found to help me and they were so busy they rarely could, I couldn’t go to the loo or get a drink as I wasn’t allowed to take him out of our cell, I mean room. He avoided re-ventilation but only narrowly. It was horrible. And so unnecessary. The spasms were enough to contend with. Believe me.

And we still live with the after-effects of RSV. Boo has bronchial hyper-reactivity, which means that the infection scarred his lungs badly and even the most minor sniffle can make him sound like he has had a 60 a day cigarette habit for 50 years. It disturbs his sleep and his feeding. He should grow out of it in time. And we were lucky it wasn’t worse.

But it still makes me angry that he got it from a hospital whose cross-infection procedures are, in the words of one of the specialists who treated Boo on the ward, ‘laughable’. Boo left that NICU with a host of problems related to his early arrival and meningitis, but respiratory problems were not among them. Not until we were forced back to the bloomin hospital.

It also makes me angry that people can be so complacent about hand washing. It’s so easy. Why is it so irritating to people?

The other day, I dropped Boo off at nursery and used the hand santizer on the entrance door (as I always do and everyone is asked to do) when a Dad behind me and clearly in a rush (aren’t we all?) said ‘Oh you’re a rule follower are you? Can I get by please?’ Because you know, that 15 seconds I spent washing my hands in the hopes any bugs I might have might not get passed on to his little bundle of preciousness was clearly a sign of sheep-like acquiescence and I was wasting his time, goddammit.

I didn’t say anything, but I did ask nursery to send out a reminder to parents to wash their hands on entering the door. I know it’s a losing battle, and I don’t wish to sound preachy. But here’s the deal: I didn’t know about RSV before having Mr Boo. Now I do. And I have seen my son and others really badly affected by it. So I feel I need to tell others what I now know so that they can help make a difference.

Hand washing is childishly simple. It’s not time consuming and it’s just about one of the most proactive and socially responsible things you can do.

This may be the silly season, but please don’t be daft. If you have a cold (it might be RSV, you will likely never know) please wash your hands regularly. Boo and I will be very grateful.

For more information on RSV, please consult the Bliss website.

This life

People who read this blog are beyond kind. Their comments, tweets and emails buoy me up and make me think that I’m maybe making a bit less of a hash up of life than I often feel I’m making.

But you shouldn’t be too nice, you know. I’m not always the strong, determined person I sometimes sound on this blog. I’m not naturally inclined to anger or self-pity, but I am definitely embattled. I get fed up. I lose my temper with others and then much more with myself. I am not fond of myself sometimes.

And I think it’s OK to say that. Because I’ve found that bottling up the frustrations and sense of being defeated is what leads to me get fed up or lose my rag. Today, I should be writing a piece for the wonderful Small Steps Amazing Achievements linky, which I love. But I am not in the right frame of mind. Boo has plateaued on progress for the time being (this happens – a lot) and I feel a bit beaten by life.

It’s not just prematurity, epilepsy, cerebral  palsy and the appointments (all the blooming appointments) that have cast me down. It’s also having kids and trying to work. I am exhausted. I wake early. Get everyone ready and out the door. I start work, if we don’t have an early appointment, after Boo goes to nursery and Sissyboo to school. On my day off, I go with Boo to conductive ed. I work around the almost daily appointments as best I can. But I don’t get enough done before I get Sissyboo  from school or after school club and then it’s violin practice, homework, play time and physio/standing frame time for Boo. This is swiftly followed by bathtime, bedtime (milk for Boo, stories for Sissyboo) and then I psych myself to do triage on the bomb site that is the house. I make dinner and wolf it down.  I go back to work. At about 10:30, I collapse in a heap.

It’s too much at the moment. And I don’t honestly know if I can carry on like this. I don’t know if I have a choice, though.

I miss my younger life, the life I never knew was so good until it was gone. It’s the little things. All the little things. Here are just some of the things I miss:

1) daily showers

2) exercise (totally out the window now I am back at work)

3) reading (I have managed 1.5 books in 18 months and one was read in the expressing room in Boo’s first NICU)

4) drinking hot drinks when they’re hot (don’t even manage this at work, which is ridiculous!)

5) cooking meals that might actually take longer than 20 minutes from prep to table

6) watching TV (only have my weekly Strictly fix at present)

7) watching movies

8) finishing a conversation

9) meeting with friends or even chatting on the phone (almost impossible to schedule)

10) having a vaguely presentable house

11) sleep

And here are the things I would change about my mad, chaotic and exhausting life:

1) not a damn thing.

photo (2)

Time to talk…

This weekend was bookended by two conversations that just a  couple of years ago I never imagined I would ever have to have. I was nervous as anything for both of them and I am so glad they are behind me, even though their repercussions are going to preoccupy us for a long time to come.

On Friday I took Boo to see his consultant to get his test results. Yes, these are the tests we had in June, the ones where the results were sent to the hospital in July and I found out by accident 6 weeks later. Results that I had read out to me on the phone by another consultant after breaking down uncontrollably on the phone to Boo’s consultant’s secretary, begging her to get someone to phone me to pass on the information they were sitting on, pointing out that it was immoral to withhold information about my child (information that could tell me if he’s got a life-threatening illness).

Four months after the tests, three since the results were sent to his consultant, I sat down and was talked through the full results.

I was dreading it. I wasn’t dreading being told my child has cerebral palsy. I know that. I’ve known that for much longer than I have publicly admitted. But I was dreading the scrupulous detail the report would contain and which will make no difference to Boo’s treatment. I couldn’t bear the dwelling on things that couldn’t be changed. I’ve done too  much of that. And I was feeling awkward about having to sit in a room with a consultant after making a formal complaint about the results debacle.

In the end it was fine. I was offered a box of tissues, but didn’t need them. I wasn’t being brave. It’s just I’ve cried those tears. There are plenty left. Just not for a diagnosis. I accepted that a long time ago. The consultant agreed that the small genetic imbalance they found is a red herring and that there is no point in The Grumposaur or me getting tested at this point, although Sissyboo might want to in the future if she wants kids. And the urine test that wasn’t done quickly enough (and which I hadn’t yet taken the 3-hour round drive to get done again) wasn’t worth doing, he said. ‘If Boo had what they are testing for there he’d already be dead’, I was told somewhat bluntly. Always a silver lining, right?

The MRI told us nothing we didn’t already know. Boo was born early but healthy. He was unlucky (I wish people would stop saying that to us). He got meningitis post-delivery and had a massive brain bleed. It isn’t my fault. It wasn’t any one’s fault. The words ‘severe brain damage’ aren’t my favourite three little words, but aren’t nearly as harrowing as the brain scan images I saw when he was a couple of months old. The images speak much more profoundly than any words on a page. And when I turned back to Boo after reading those words and he smiled at me and said ‘Hiya’, I was reminded of something else that I already knew. ‘Severe brain damage’ means a lot of things, but it tells you very little about our beautiful Boo and his winning personality.

The rest of the conversation went well. Lots of talk about his educational needs and so forth and I left feeling oddly relieved, positive and set for the road ahead. Not so The Grumposaur but that’s not a story for the blog.

It also gave us the resolve to have another conversation. With Sissyboo. Now was the time to tell her, we thought. Tell her that her brother not being able to sit or walk like her friends’ younger siblings is not just (or even at all, as it turns out) about the fact he arrived 11 weeks early. It has a name: cerebral palsy.

I realise some people reading this might not think we did the right thing in telling her at this tender age. She’s not quite 6. It’s a lot to put to a young child. I know.

I share those reservations but as people have said to me at least 100 times since Boo was born, there’s no manual for situations like this. There are books – wonderful books – introducing children to various disabilities or illnesses that might affect their family members. But I haven’t seen one for cerebral palsy. Maybe I’ll write one, one day.

But if people say ‘Why tell her?’ my response is ‘Why not?’ You see so many aspects of Sissyboo’s are already saturated by CP. When her I turn on the telly or sets up a craft to occupy her so I can squeeze in some exercises for Boo. When I have to take her to the school breakfast club so I can take Boo to an appointment. The books with cerebral palsy I borrowed from the library and which I have hidden, because I know she if she finds them, she will sound out the words in her best year one phonics and want to know what they mean. When he goes to hug her (he does this a lot) and he accidentally bashes her in the face because his arms don’t go where he wants them to. When her friend’s 9 month sister comes round and despite being half her brother’s age can cruise on furniture and crawl.

She is not daft. She knows her brother is not like everyone else’s. And she needs answers too.

Of course the cerebral palsy label doesn’t give them. Not to the important questions. To her. To us.

‘Will he go to my school?’ ‘Will he need a wheelchair?’

But it does provide a way of answering the one question we don’t ask but everyone else who doesn’t already know Boo does: ‘Why is he different?’  Now she can answer: ‘Cerebral palsy’. It’s a conversation stopper. And she needs the label to be able to achieve that.

Between ourselves, however, ‘cerebral palsy’ is a conversation starter, a means of opening up the host of questions I know she has about her brother. It’s a licence to ask those questions. She needs that, too.

So when we sat down to lunch yesterday, we told her. The Grumposaur started by asking her if she remembered that Boo had to go to London to have some tests done a few months ago. He explained that we’d had the results and that all the really nasty things that they might have found were found not to be there. Boo was healthy. But Boo had problems.

‘You remember when he was really ill in the hospital just after he was born? Well that illness has left Boo with some problems called cerebral palsy.’

‘What’s that?’ she said.

‘Well, you know that Boo struggles to control his muscles and move in particular ways, that’s cerebral palsy’, I said. ‘It makes things we do easily, like sitting or feeding ourselves or moving about very hard. But it doesn’t mean he won’t be able to learn these things. He might not learn them all. We just don’t know. But we can help him to do as many of those as possible, by just doing all the things we are doing – loving him, playing with him, reading to him, doing his physio.’

I can’t give you the rest of the conversation in detail. It’s too hard to recount. I can’t remember it all. But she was unfazed. She asked the questions we have asked people: ‘Will he walk?’ ‘Will it stop him doing things?’ And she asked those same questions partly because we have been partly infantilised by all of this, turned into helpless children, asking the doctors like a vulnerable infant asks their parents to assure them everything will be alright.

But as she asked these same child-like questions, I was struck by how very grown-up Sissyboo was. You see before we had time to respond, she already had answers. ‘Will he walk? Oh, [she is smiling now] he might need a wheelchair mightn’t he? Daddy, did you see the videos of wheelchair basketball on Youtube?’ ‘Will it stop him doing thing? Actually, Mummy, it won’t because we will just make things happen for him. And he’s very determined, my brother.’ (Well, he has a great sister to teach him these things, I thought…)

We talked about lots of other things. And she hugged her brother and messed about with him by pulling faces and making him giggle uncontrollably as we spoke.  Then we asked her if she had any questions. She said she didn’t, but she did have a story to tell.

The story was a fabrication. Sissyboo doesn’t lie very much by 5-year-old standards, but she does make up imaginary scenarios involving fictional people from time to time. It’s clearly a way of her asking questions she doesn’t know how to ask, or solving problems she can’t work out in other ways. I suppose it’s the 5-year-old equivalent of the teenager who tells her mum she has a friend with this problem, rather than admit the problem is her own.

She told us about a fictional couple where the Dad has CP (in the course of the conversation we’d told her that the husband of someone she knows – a dad, who can drive, has kids and is therefore the epitome of normal in her mind has CP) and the Mum then divorces him because she is worried that any kids they have might catch CP. Now, there’s a whole bunch of stuff here I’m not minded to analyse for you, but she was clearly worried that CP might be passed on genetically, or more pressingly, that it was contagious. It wasn’t that she thought it was catching, because, it turns out, she knew it wasn’t; but she was worried that others might think it was, and she wanted strategies for dealing with their ignorance.

She was also clearly worried that people would ostracise Boo as he grows up. They will, I thought, but we have to teach him not to let it bother him. That’s a conversation for another day. Because this is the first of many, of course.

I know it will take time for the words, and their slippery meanings to percolate her consciousness as they have mine. And I know that some days she will be fine about it and others she will feel confused, sad and as if the world is a hostile place that has to endured rather than lived in. I know, because she is my daughter.

But I am so proud of Sissyboo. I am so proud that while we talked through stuff no child should have to hear about a sibling, she looked at her brother and in the face of the words, she saw beyond them them to a little boy she loves more than anything else in the world. A little boy with a happy life ahead of him if she has anything to do with it.

I am proud because her question about the fictional family shows that her first thought was for Boo and his feelings not for her own (important though they are – and I don’t forget about them). In her mind, this is happening to her brother. There was no ego here. No prejudice. Just a beautiful young person’s love for her sibling.

I have two wonderful and beautiful kids. So please, consultants and medical professionals, don’t call me unlucky. That’s one label that just doesn’t stick.

Good News Fridays #26 and 27

It wasn’t that I didn’t have any good news last week. I did. But last week was World Cerebral Palsy Day (which took up a lot of my non-parenting/non-working like crazy time) and I couldn’t let my 6 month blogging anniversary pass without comment. Anyway, we all love a freebie, so here’s two Good News Fridays for the price of one.

So what’s been happening with the little Boos?

Well, since there’s been a lot about Mr Boo lately (isn’t there always?) let’s start with the lovely Sissyboo. I have been meaning to write a post about her for a while now. You see, she hasn’t been having an easy time with it recently. While I have been expressing relief and happiness that things are starting to fall into place for Boo in terms of equipment (Piedro Boots, standing frame, specialist seating on order) our home is starting to look more and more like an extension of a hospital or therapy centre. Even though we haven’t yet sat down with her and said explicitly since getting his test results, ‘Your brother has cerebral palsy’, she is no fool. She knows things have changed. That pragmatism has extinguished any glimmer of blind optimism dimly visible 18 months after Boo’s birth.

And boy, it’s hard.

And it’s harder still when you have just moved from reception (a whole lot of play with learning bolted so cleverly you don’t notice it) to a much more structured year 1. And it’s even harder still when your teacher, who is on a phased return after sick leave, is only there for parts of the week and can’t get to know you. And your best friend, who you’ve known since you were six months, is being moved by her parents to a private school which has resulted in lots of ‘My school is great, yours is rubbish and you won’t have any friends when I’m gone’ conversations. I am fond of Sissyboo’s friend, but she has a streak of competitiveness and, dare I say it, meanness, that I find hard to accept and in the long term, I think her moving is probably not a bad thing for Sissyboo.

But of course, it feels like it, because it’s yet another change in something she thought she could be sure of. The poor girl must feel like the tectonic plates of her young life never stop shifting. I feel so sorry for her. We have had disturbed nights in which she woken up sobbing worrying that her brother won’t ever play football or crying that she has lots of friend and why is her best friend being mean to her. It’s been so hard. She has lost confidence in her reading, her maths (never a particular strong point) and all sorts of out-of-school activities (swimming, riding her bike).

I phoned her teacher about it. She sounded so embattled and confrontational (there have been a few teething problems with the class and she has had a lot of very demanding parents being quite rude, I think about things in the first few weeks of term). I think she thought I was one of those parents. (I hope I’m not!) But after a few minutes of general chat, I was convinced she didn’t know Sissyboo at all from the things she was saying about her (her reading ‘wasn’t secure’, her maths – not her strong point, admittedly – was ‘poor’) and that she was ‘timid’ probably couldn’t cope with her transition to year one and that was why she was unsettled. This was very far away from her school report in the summer.

I didn’t contradict her, but I did say that I thought there was clearly a difference between how she was at home and school that concerned me. I then said I should update her about things at home (Boo’s diagnosis etc.) and it was clear that there hadn’t been a proper handover after reception because she had no idea. Her tone changed immediately. She said that knowing this made sense of some things Sissyboo had said at school, why something that the teacher obviously thought was innocent and that was said by another child had upset her Sissyboo so much earlier in the week.

I explained that Sissyboo’s world was being knocked off its axis again and when this happens (all too frequently), she has a confidence dive. The teacher took it on board. She has spent time talking to Sissyboo and getting to know her since. She made sure that upcoming assessments of reading and maths were done slightly differently to make her feel less on show (she can be quite confident and extrovert, but on a bad day, when she’s worrying about her brother, she can be reduced to tears by an innocent look).

The result: our happy little girl is coming back. She has gone up 2 reading levels in 3 weeks (thank goodness, she was so bored of reading books at home that were too easy for her, but which she was fluffing at school) and instead of saying she is rubbish and can’t do things, she is happy to give things a go again. To try with her numbers. To go out on her bike at the weekend.

But let me be clear: this isn’t an academic issue for me. Education is very important to me, but I am no hot-houser and all I really want for Sissyboo in educational terms, at this young age, is for her love of learning not to be impacted too much by things at home. I wanted her confidence to be nurtured. I want her to feel happy in a space which is all about her, unlike home, which necessarily has to be a lot about Boo. I know there are going to be lots more bumps in the road, but this feels like a big hump we’ve got over for now. And that’s a very good thing.

As for Boo, well lots of his good news has been posted on the blog already, especially his big news: him happily transferring to the toddler room at his nursery, which has felt like a very big deal this week. In other news, we have finally seen an OT from Social Services. Here in Surrey, we have one OT (health) who does ongoing developmental stuff for educational settings and another, from Social Services, who does equipment for the home (and there’s a fair amount of arguing about who does what between them even though the lines seem relatively clearly drawn).

Our Social Services OT was lovely. She audibly gasped when I showed her how I had to bath Boo. ‘You’re going to end up in hospital yourself with back problems,’ she said. ‘I know,’ I replied, thinking that’s what we’ve been saying for the 8 months we been on the waiting list waiting for help! Anyway, a bath seat is now on order so Boo will be able to sit appropriately supported without me contorting myself, and she’s also order two handrails to go up our stairs to aid us as we carry mini-Hulk up to bed or for his bath. I have to say her concern about the steepness of the steps coming up to the front of our house (too steep a gradient for a health and safety compliant ramp, apparently, if Boo needs a wheelchair), and thoughts about tearing up the drive for a lift were a bit daunting, but it’s good to have someone proactively thinking ahead rather than trying to patch problems of long standing.

And finally in good news, The Grumposaur and I got a night away! I know! This was the first time we’d been away on our own (albeit for less than 24 hours) since before Sissyboo was born nearly 6 years ago. It was a treat paid for by one of his employers for a bunch of work he did for free. We had a lovely time at a fab hotel and spa. I worried about the kids (too much) who were very happy with my parents and sister, but we had a lovely time. I have to say we need more practice at relaxing, and despite our intention to party the night away, we ended up going to bed to get some very much needed shut-eye at 21:30 (I know, how romantic is that?), but it was lovely.

So, those are our good news highlights this week. Hope you’ve had lots of good things in your week. I’d love to read about them in the comments box below.

Happy weekend!