Monthly Archives: October 2013

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!

Moving on Up

Monday was a big day for the Boos. Sissyboo had an inset day (or an insect day as she insists on calling them – I wonder what she thinks the teachers get up to…) and so I took her to Chessington World of Adventures for the first time. We had a great time, bumping into half her classmates (great minds…), looking at the animals and going on virtually every ride there. She is just 1.2 metres now, which means that almost all the rides, including some terrifying ones, are there for her to try. And Sissyboo is a trier (like me). Unlike me, however, she is also a daredevil. So when she begged me to go on Dragon Falls, a log flume type thing with a massive drop at the end (how is it safe to drop from a great height in a plastic box on water?) I said  ‘OK’ in my best ‘Me? Scared? Never!’ tone of voice.

I spent the whole ride waiting for the drop at the end, heeding the Chessington guide’s advice to put my arms round Sissyboo and get her to hold the empty seat back in front. (The park was so quiet. If half of her school hadn’t been there, it would have felt like Westworld). Anyway, I held her about as tight as I could reassured her (unnecessarily) that it would be OK and not to be scared (she wasn’t) until we plunged at great speed to get soaked in the name of fun. And you know what? It was. Although it wasn’t so much fun that I would agree to her pleas we did it again straight away, I enjoyed it. My little girl is not so little after all.

Back at home Boo was making a plunge of his own. Monday was Boo’s first full day in the Toddler Room at his nursery. Until now, and despite being much, much older than all the other kids, Boo has been in the Baby Unit. It makes sense. No developmental consultant will put Boo past 8 months physical development because he can’t sit independently. Most of the other babies in the Baby Unit can stand before they leave there; many can walk. Boo can’t do either and may never do either, but he is speaking a little and even though he finds them difficult to manipulate, he wants to play with toddler toys: pop-up toys, puzzles, shape sorters. Cognitively we won’t know exactly where he is for some time, but at the moment he seems to be where he needs to be.  Which means, as his physio pointed out, that he needs to be with kids his own age. Toddlers. Even if Boo can’t toddle

The nursery has prepared themselves, Boo and us for this well. Staff from the Toddler Room, including his new key-/one-to-one worker visited him in the Baby Unit and observed him doing his daily physio several times. He did lots of visits to the new room. I went in for a meeting with the room supervisor. Boo’s physio went in to talk to the staff in the new room about Boo’s needs and demonsterate his exercises.

But it still felt like such a huge deal. His difference is so visible there. When we dropped him off for the first time, one of the girls welcomed him and made him giggle but looked at us quizzically as we just stood there for a minute. She was waiting for us to put him on the floor and let him walk over to a toy like the rest of the kids, then she remembered this wasn’t Kansas anymore and let us pass Boo to her so she could decide where to put him safely.

When he came home he seemed a bit more tired than normal, but very happy. But I couldn’t shake off my doubts and worries. It’s one thing to be lying on a playmat in a room of babies, quite another when they are running at break-neck speed to the water tray. What would the other kids think of him, I worried? Would they not want to go near him? All I could see was a life-time of difference rolling out in front of him. And it left me sobbing at my desk at work despite the nursery sending happy pictures of him home to us in his daily physio/activity book.

But then I went to pick him up yesterday and saw for myself how Boo is getting on. As I walked through the door, he was giggling furiously. Another little boy (who apparently adores him and brings him toys all day) was blowing him kisses. Another was saying his name respeatedly. They showed me some pictures of what he had been up to that day. He was standing at the water tray, holding himself up on his own by propping.

He was standing up, people! (Ok, he was using the tray like a standing frame, but we’ll take that.)

Then they showed us pictures of him dancing when they were singing earlier in the day. He looked so happy. So at home. The other kids looked so comfortable around him. And then I remembered, 18-month-old children don’t have enough sense of normal to know anything about what’s different. I hope knowing Boo will mean that some of them don’t associate different with bad or defective when they’re older.

So today, when I dropped Boo off, I found myself behaving like I did at Dragon Falls on Monday. My nerves were still there, but I put on a brave face and held on tight until the moment I knew I could let go.

Because my babies are growing up. I will never stop protecting them, but we all need to take a plunge sometimes and I need to let go sometimes, too.

A few things about me and blogging (Liebster Style)

Last week marked my 6-month bloggerversary. I still can’t quite believe that the wheels haven’t fallen off the blog in recent months. In all honesty, sometimes, the blog feels like the only together thing in Boo Land. That’s in part down to having somewhere to clear my head and think aloud, but it’s also, as I’ve said before, because of those of you who read this: blog readers and fellow bloggers, who are just about the nicest people I’ve (almost, but never quite) met. You keep me sane. You make me laugh. And sometimes, you make me cry. Whatever: you invariably buoy me up.


So imagine how lovely it was to be nominated for a Liebster award. This is actually my second Liebster award post, which is probably breaking some good-blogging rule, but I never said I was a good blogger. And since the person who nominated me was the completely wonderful womanunadorned, author of an amazing and poignant blog that I have only discovered since blogging myself and which I now read avidly, well… I couldn’t say no.

Now womanunadorned knows more than her fair share about life’s damned intricacies and relaxed the Liebster award rules (usually 10 nominations, and 10 questions) accordingly. So, I only have three questions to answer. Phew! That said, it has still taken me a few weeks to write those answers up, which just goes to prove, should you foolishly have doubted it, that womanadorned is wise and perceptive. Anyway, here are the questions and my answers.

1. What blog post are you most proud of? 

I’m not good at trumpet blowing, but I found this surprisingly easy. It’s my ‘Dear Me: A Letter to Myself’ post, where I tried to rid myself of the guilt I feel for Boo’s premature birth and associated disabilities. It wasn’t my idea, as I explain in the post. It was an exercise suggested during a short course of cognitive behavioural therapy. I’m proud not because I came up with a good idea, but because I committed to print things I needed to allow myself to say and I let myself off the hook (for once). Mostly, though, I’m proud because it provoked many others to write posts on the same subject, a number of which hooked up to the one linky Premmeditations has hosted. They are some of the most powerful blog posts I have ever read.

2. Have you ever removed a blog post after publishing it, and if so, can you tell us why?

No. Actually I haven’t. I think this is because it takes me so long to type up on my phone (the occupational hazard of the anonymous and secret blogger) the posts that have been swirling round in my head for weeks that they have long since been edited before they end up on the blog.

3. Who do you secretly hope reads your blog?

Well, I’ve said this before, but I may as well repeat it: I still find it wonderful and amazing that anyone reads it all. I don’t have a particular reader in mind when I write, although I hope some parents of premature babies or children with additional needs feel the blog speaks to them. Mostly, though, I hope that I make the time to read the posts I write. Sometimes, I need to hear what I have to say.

OK. So now I get to ask the questions. And I feel like breaking the rules, too. So here are another 3 questions for 3 wonderful bloggers that I hope you already know and love, but if not, you now know where to find them.

My questions are:

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

2. What do you wish you could know about your future?

3. What do you wish you could tell yourself of 10 years ago?

My nominated bloggers are:

1. Itssmallworld This wonderful blog is about Small, a little guy with a long lists of symptoms, no diagnosis and a whole lot of character. Oh and did I mention that he has a fabulous mum?

2. LearnerMother Michelle may recently have declared herself a Muppet, but don’t be fooled. She is quite honestly one of the loveliest bloggers I know and for a self-declared learner, she has taught me a lot about blogging and parenting

3. Complicated Gorgeousness  I have the feeling that if gorgeous Gabe and Boo ever met they would be fast friends. And if I ever met his Mum, well, let’s just say we’d have to have the biggest coffee pot or carafe of wine to hand, because we’d have a lot to talk about.

Really, you need all these blogs in your lives.

My Six Months of Blogging

A lot has happened in the last six months. Boo turned one (actual and then, 11 weeks later, corrected). We somehow got through the one-year anniversary of the day he nearly died. Then the massive steroid dose he’d been on to rid him of his infantile spasms finally (after months) left his system. I went back to work (eek!); he started nursery. He got glasses. He got huge. Sissyboo left reception and started year 1 and learned to ride a bike. Boo got Piedro Boots, a standing frame and a diagnosis of cerebral palsy.

And I started a blog where I wrote about all of this and a whole lot more.

Looking back on my first post, I can read the fear and pain behind the words. I wrote that post the night of Boo’s first birthday. It was a day I had planned for ages and it had many lovely moments. But it was also one of the hardest days of my life. We had come so far, but we had ended up somewhere we never expected to be. The Grumposaur spent most of the day (and most of the family party we’d dragged relatives to from various parts of the country) out on phantom work errands. He just couldn’t face it. And then we got an ant infestation in our kitchen and they ate half of the lion birthday cake I’d made Boo. I cried for an hour solid.

I felt lonelier than I have ever done in my life. I knew I had to return to work in a few weeks. I was battling severe depression and acute anxiety and the 8 week course of Cognitive Behavioural Therapy I’d been on had only just scratched the surface of things before it stopped.

So I started a blog. As I said at the time. I wanted to connect with people. I wanted to feel less lonely. And I wanted a voice: a space in which I could be me, because I didn’t feel that I could really talk to anyone about our new normal in the way I wanted to.

I also hoped I might be able to help others. I’d come to rely on so many other blogs (they’re listed in that original post with some other firm favourites listed on my blog roll) since Boo’s birth. They gave me answers and they gave me hope. Maybe I could provide that for others, I thought. The lovely emails I get from time to time, the comments that people leave, and the number of people who find my blog by googling infantile spasms – my heart gets heavier every time I see that in the blog statistics – makes me think maybe I have on a small scale.

This is a little and niche blog and I am not a very good blogger. I know a little about SEO but I forget about it the minute I start to type. I still haven’t worked out what Klout and Kred are, and I am a no web designer. I look longingly and admiringly at the beautiful sites of many of my favourite bloggers.

I made the decision to blog anonymously (and have explained some of the many reasons why here). I also decided to blog secretly. A couple of people now know I write this, but none of my family, including The Grumposaur, nor even my best pal knows I blog (although if she ever found this site it would take her a millisecond to realise it’s by me). I blog on my phone, in the bathroom while brushing my teeth, while drying my hair, riding in the back of the car, under the duvet at midnight after working late into the night to make up for time spent at Boo’s appointments, sometimes in 1-2 minute chunks. I try to have a blogging schedule. Life often gets in the way. In other words, I am still the novice blogger I was 6 months ago.

But it wouldn’t be an exaggeration to say that blogging has made a huge difference to my life. Bloggers have made a huge difference to my life. How? Gosh, where do I start? I have moved from despair and fear for Boo to acceptance and optimism. OK, I admit, acceptance and optimism are often accompanied with generous dollops of anxiety and frustration, but I am in a very different place since starting Premmeditations.

That’s partly because writing is pretty much the best therapy I know. It’s also because the blogging community (bloggers and blog readers, tweeps and other online lovelies) have been amazingly welcoming, supportive and understanding. They have buoyed me up when I’ve been down. They have turned tears of anger into those of laughter. They haven’t judged me.

The premature baby and SEN online communities are full of amazing people who are living through difficult and sometimes completely horrendous things. And yet they still offer a shoulder to cry on or wise or kind words. I feel unspeakably lucky to have ‘met’ so many of the people I now feel I know through starting this blog. But to my surprise, people read this blog who apparently don’t have any direct experience of prematurity or disability. That they read and seem to enjoy the blog – you know who you are! – makes me very happy. Because they seem to see something I sometimes lose sight of. I am parent first and a parent of a premature baby with special needs second.

When I started this blog, I thought there was a very real chance that I would write a handful of posts and stop. Because I would find it too difficult or I would think what I was writing was naff. I was sure no one but me would read it. That anyone else does still shocks me and that some seem to like it and sometimes say so in comments, tweets and emails makes my head spin.

Six months ago, I had no idea where life was taking us. Things are clearer now but there’s still so much we don’t know. One of the few things I do know is that I will keep blogging. Thank you for having me for the past six months.

Love Mrboosmum

World Cerebral Palsy Day 2013

Wednesday 2 October 2013 is a big day for us. Boo will be exactly 18 months old (actual, not corrected), it will be 6 months to the day since I wrote my very first blog post, and it’s World Cerebral Palsy Day.

World Cerebral Palsy Day is a great initiative. I’m a big fan of awareness days and weeks. I’ve written in support of several (World Meningitis Day, Volunteers Week, Carers Week, National Breastfeeding Week) since starting this blog and World Prematurity Day in November is looming large in my mind at present.

But at the same time, I worry that awareness days and weeks have their limits. I worry that for each of those to whom advocates manage to speak, there are many others who don’t hear or listen, or who do, but when the days or weeks have past, lose sight of the messages in the hectic activity of their own lives. I am as guilty of this as anyone else.

World Cerebral Palsy Day is different. It isn’t just an awareness day; it’s an activism day and in just about the most imaginative way possible. People with CP, their friends and families or an budding inventors with a mind to improve the lives of others are invited to come up with an idea that would change the lives of people with this neurological condition in material ways. Oh and they have to communicate this in a 1-minute video or text. Dragons Den contestants eat your hearts out.

I love the creative, proactive and positive attitude towards cerebral palsy this campaign encourages almost as much as I lament my own inability to be as inventive and creative as any of the entrants. And I wish I knew what I could do to make life for Boo and children like him easier. Of course, the answer is that I am still working things out.

Cerebral palsy is not a progressive condition, but its presentation can alter, in none more rapidly, perhaps, than in the developing child. We just don’t know what particular challenges Boo will face. I don’t know if he will stand independently or walk. I don’t know whether the high tone in his arms will prevent him from writing or feeding himself. I don’t know if his speech will develop typically, whether he will be cognitively challenged or delayed, or whether his epilepsy will return. I don’t know how hard life will be for him.

The not knowing, as I have written about many times on this blog before, is one of the hardest things to deal with in our life. It’s hard on all of us, even and perhaps especially, Sissyboo, who wants to know if her brother will be able to play football or go to her mainstream school. Of course, knowing would make no difference to how we feel about him, but it might help us to plan better, to do all we could to make a difference to him by anticipating the challenges ahead and mitigating them wherever possible.

But for all I don’t know about Boo’s future, I have come to know a good deal about cerebral palsy in the last 18 months. Despite cerebral palsy being one of the most common physical disabilities in children – as the Scope website will tell you, it affects around 1 in every 400 children in the UK –  I must admit that I knew pitifully little about it before Boo’s birth.

Some of the most difficult moments in our lives are those where we are met with the prejudice of others about Boo’s disability or their well-meaning attempts to make us feel better about it (‘Oh, I’m sure he’ll walk, he’s a boy and they’re always a bit lazy’, you know the sort of thing…).

I can’t invent – I’m just not creative in that way – but I like to write and have a place to do it here. So this is my modest contribution to World Cerebral Palsy Day 2013. Here are some of the things I’ve learned about cerebral palsy, with a side-order of some of the things I wish people didn’t say to us. Please note, though, that I am not a medical doctor and I am just explaining things as I have learned (I hope correctly) to understand them. For more information, please visit the fabulously informative and accessible Scope website.

1) Cerebral palsy is a neurological disorder most often caused by a brain injury sustained pre-, during or soon after birth. In Boo’s case, he sustained a bilateral brain bleed after contracting an infection (probably meningitis, but the sample taken for testing was contaminated and therefore ambiguous) on day three of life, having been born 11 weeks early. This left him with PVL (softening of the white matter around the ventricles that had become enlarged during the bleeds).

2) The brain injury makes it difficult for those living with CP to control their movement or posture as their brain is telling their muscles to do things that impede voluntary action. This isn’t a nervous disorder (although Boo, like many diagnosed with CP has some difficulties making sense of some of the sensory feedback his body receives in unfamiliar surroundings), neither is it a muscle problem. Boo is neither ‘strong’ nor ‘weak’, though lots of people have said these things to me. His muscles present varying degrees of tone. High tone or hypertonia means stiffness or rigidity when the muscle should be at rest (this affects Boo’s arms and legs). Low tone or hyptonia (which affects Boo’s trunk) manifests itself as floppiness or the marshmallow effect, as we call it.

3) CP can affect one limb, one side (hemiplegia), three limbs, or all four (quadriplegia). The mouth (and therefore speech) can also be affected. Boo has quadriplegic CP, a phrase that seems to really frighten people (and there seems to be a good deal of confusion about quadriplegia and paraplegia). All this means is that his CP affects his arms and legs.

4) There are several different types of cerebral palsy:

a) Spastic cerebral palsy is the most common presentation. Spasticity means high muscle tone (stiffness and decreased movement range). Oh and let me get this off my chest now. Please, please, please, don’t ever use the term ‘spastic’ pejoratively. It is no better than the r-word and often used interchangeably with it. And yes, I take great offence at anyone using my son’s physical disability to disparage others. I consider this a gesture of hate and profound ignorance.

b) Dyskinetic, dystonic (as Boo’s consultants call it) or athetoid cerebral palsy can involve involuntary movements or, as it Boo’s case, rhythmic twisting.

c) I must confess that I know least about ataxic CP, and it is not especially common, but it affects the whole body and manifests itself, as I understand it, in balance problems and sometimes difficulties with spatial awareness.

Like many living with CP, Boo’s presentation is mixed: spastic and dystonic.

5) CP can be associated with problems with speech and it can be accompanied by cognitive difficulties but many people living with the condition face neither of these challenges. Don’t make assumptions either way (that goes for healthcare professionals, too, who in my opinion are some of the quickest to judge!).

6) CP is not, as I’ve already said, progressive; neither can it be cured (those managing the grotesque pantomime of disability benefit assessments take note). The brain injury is static. That said, years of moving in particular ways can cause musculoskeletal problems and lead to painful discolations and multiple surgeries.

7) But, neuroplasticity (the brain’s capacity to rewire around damage after sustaining an injury and something we take for granted in adult stroke patients, for example) is an amazing thing. Some of the latest research in neurorehabilitation is very encouraging and early intervention of various therapeutic kinds can produce good results. Boo has physiotherapy, is under two occupational therapists, will start speech and language therapy and we also attend a conductive education school for parents once a week.

8) But again, I’m going to repeat myself. Never make assumptions. CP affects individuals individually. Two people can have the same diagnosis and present, to use a clinical term I don’t much care for, very differently. And the numbers or words used (mild, moderate or severe, for example) to categorise CP aren’t all that clear. If you want to know how CP affects someone, you need to ask them, or in Boo’s case (because he’ll just grin at you and call you Dada) ask their family.

9) Oh, and CP isn’t a disease. This common slip of the tongue might seem innocent enough, but its implications are far-reaching and profoundly unhelpful. You won’t catch anything from spending time with my son, except, if you’re lucky enough, a love of life, and an infectious laugh that will pull you through even the toughest days.

I would do anything to make the life of Boo and others living with CP better. I wish I could come up with something practical and life-enhancing. Maybe one day. For now, spreading awareness of CP feels like all I can do.

I’ve said this before, but it’s worth repeating. CP is something that many people live with. But it does not define them. Taking the time to understand that, as well as understanding CP itself, could make a very real difference to their day-to-day lives and those of the many of us who love and are inspired by them.