Monthly Archives: July 2013

My Little Water Baby

I’ve been a bit quiet about Mr Boo in my Small Steps Amazing Achievements posts over the past couple of weeks and have handed over to Sissyboo, who’s been making great strides of her own.

Boo on the other hand… Well, let’s just say things haven’t being going quite so well. If you want to put an optimistic spin on it, he’s consolidated skills he’s been learning over the last few months ready for the next developmental spike. Another way of looking at it is that he is temporarily plateauing. To be frank, for about three weeks it has felt like we’d hit a brick wall and were struggling to get ourselves up following the impact.

But you only need a little glimmer of hope to get the gumption to pick yourself up, dust yourself off and move forward, I find, and in the past few days there have been a few little glimmers. One involves Boo’s promising new obsession with his feet, which may well form the basis of next week’s Small Steps post, but for now, I wanted to focus on quite a different achievement.

Boo is a cygnet!

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For those of you who don’t follow the Aquatots swimming programme, that means Boo that has completed his second swimming level and a bunch of skills associated with it. I am so proud!

I started taking Boo swimming in September of last year. His sister had started Aquatots swimming lessons at about 4 months of age. We took a break of 18 months at one point, but now she’s nearly finished all of the 20-something levels and at age 5 1/2 can swim 17 lengths, dive like a pro, and is much more confident and safe in the water than her mother!

In fact that’s why I started swimming lessons for her. My own mum has a pathological fear of water, which she successfully passed on to me and I only learned to swim myself as an adult. Not only is this a bit embarrassing, it’s also a safety issue. I didn’t want my kids to be like me. In fact, that just about sums up my parenting goals full stop.

Even after Boo was born prematurely, I knew I wanted him to have lessons like his sister. So he was safe in the water. And when his muscle tone issues became more apparent, I became even more determined. Many children with cerebral palsy and other neurological and motor disorders are prescribed hydrotherapy as part of their treatment. Where I live, this isn’t an option, but private swimming lessons were, and if they could help give him more awareness of his body in space, that could only be a good thing.

But the reality of swimming lessons was even better than I’d thought. Boo has developed a freedom in the water he doesn’t have on dry land. When he started, his arms were rigidly down by his sides. Slowly he started to move them forwards and attempt to grab toys or the side of the pool (albeit often with clenched fists). Most of all though, he just loved being in the pool. Like his sister, he is a real water baby and he loves being around other kids his own age. He laughed from when the class began to when it finished every single week.

And then came the damned infantile spasms and the steroid treatment and level 2 swimming had to be abandoned. I missed it. I felt Boo was missing out therapeutically too, but there was nothing we could do. It was a happy day, indeed, when we took it up again in May. Boo hadn’t forgotten much and squealed even louder during lessons.

So what can he do? Well, he can ride piggy back on me while I swim round the pool (usually eating my hair, I have to add). He will kick his legs when suitably encouraged and reach out for toys in front of him, even if he finds holding them difficult. He tries to grab the side of the pool. He happily goes under the water and knows to hold his breath when I give the ‘ready, go’ command and kicks to the surface. He can swim about half a meter underwater himself and completely independently (yes, I used the words independently and Boo in the same sentence). And although he’s not supposed to do this, I love the way he rolls 360 degrees as he swims forwards.

He can roll in the water. Let me repeat that: he can roll, yes roll, in the water.

After I don’t know how many months of practice, he still can’t roll on dry land and might never be able to. In the water he can. He shouldn’t. But he does. And he loves it and I love it too.

One of the other things I love about all this is that this is not a SEN swimming class. I have nothing against SEN classes and can see that we will only get so far with Aquatots lessons before Boo’s physical challenges prevent him from progressing in the way his peers do. A SEN class will clearly be the right place for him then if I can find one locally. But at the moment, there is not very much difference between Boo in the water and the other neurotypical kids in the class (some of whom are a fair bit older than him). And maybe it’s wrong, but I get a kick of that. When the need arises, we’ll regroup and find a more suitable class for him, but for now I’m sticking with the lovely teacher and fabulous hydrotherapy pool we have access to. The half an hour we spend together in the pool is some of the best 30 minutes of my week.

Well done, Boo, my little cygnet. I am so proud of you. And you know what? One day, you’ll be a swan, baby. I promise you that.


A Blissful Afternoon Volunteering


Yesterday I had such a fun afternoon. I volunteered to help cheer on four amazing fundraisers competing in the 2013 London Triathlon for Bliss.

Back in March I did my own bit of fundraising for the same charity by running my first half marathon. I decided to start running (having been unwell, unfit,  depressed and never having run in my life) just weeks after Mr Boo left hospital. It was a mammoth task for me, especially after Boo developed infantile spasms. It was touch and go whether I would be able to do it, but Boo, the cause and the £1500 I raised in sponsorship kept me going. I blogged about it here.

I still find it hard to believe I did it but I have the finisher’s medal to prove it and for 3 months afterwards I had an injury (ITBS) to show for it, caused by having to up the distance too quickly in the last few weeks following Boo’s interruption to my training.

The injury’s gone now and so, to my shame, is my fitness and waistline. My return to work in May has been good for our family bank balance and terrible for my health. I want to get back into running. I can’t say I love running the way serious runners do. Often I can’t bear it, to be frank, but in 30 minutes I can run over 3 miles, clear my head and do something for me that also helps my kids. They need me to be strong. Life is often difficult. Being fit helps. I can really see that now I’m for not.

But running also helped my mental well being. Exercise is not a universal cure for depression and anyone who thinks that telling someone who is depressed that they should go for a jog clearly has no idea what they are talking about. But it has helped me. I tried to get at why this is the case in my Keep on Running post a few months ago but I still can’t quite claim to understand fully. It is partly about turning the difficulties we face into a positive. It’s partly about wanting to do all I can through fundraising to prevent others going through what we have or making it easier for them, by supporting Bliss, if they do. It’s also, largely I think, about acknowledging Boo’s challenges and achievements.

Nothing comes easy for Boo. As you’ll know if you’ve read this blog before, at 13.5 months corrected (16 months actual), Boo can’t roll, sit, crawl or stand. Getting full head control was a major step. Reaching over his head another. Playing with toys in a supported sitting position another minor miracle. We do therapy with him a few times a day every day. We work for months on the same skills. He gets grumpy, frustrated and tired. I distract him and then expect him to keep going. We push him, but miraculously he also pushes himself. He never gives up. And I will never give up on him. When you look at it like that, a half marathon or triathlon is a walk in the park.

Seeing the Bliss participants yesterday and cheering them and others on reminded me of what a resilient, determined, compassionate and optimistic bunch we humans are and how much we can achieve when so much is at stake. I feel reinvigorated to get back into running and, as I’d always planned, I feel compelled to find another fundraising  challenge for next year. Watch this space.

Yesterday has also convinced me to do more volunteering of this kind. I had a great time and the Bliss triathletes really seemed to appreciate our whoops, claps and screams. There were only two of us, but we were loud. Others saw the Bliss flag and our clapping sticks and shouted ‘great charity’ as they ran past. Putting the charity on others’ radar is so important. When there was a cloudburst and we got soaked for 10 minutes and other charity supporters ran for cover we stayed out and *we* got clapped and thanked by runners for various charities for being out there to support them.

Not everyone can run a half marathon or compete in a triathlon. But anyone can clap and cheer and, believe me, it can make all the difference as you drag yourself to the finish line. So please consider volunteering to help your favourite charity in this way. And if you fancy doing it for Bliss take a look at this website and maybe I’ll see you there some time. Next time, I’m taking Sissyboo!


magic moments

Good News Friday #15 and The Play Agenda

What a week! Sissyboo finished her first year at school on Wednesday and the summer hols are upon us, which means, as I explained last week, that this is the first of six weeks that I’ll be combining Good News Friday with some thoughts on The Play Agenda run by the lovely Leoarna at Not Different But Interesting. To learn more about this fab new linky, click here.

But first, an update on Boo. Well he hasn’t been doing all that well in the heat. Everything is a great effort for him add unusually high temperatures to the cruelty of his day-to-day challenges and things are harder. They’re harder still when you’re teething (9 and 10 through, 11 and 12 following). And to cap it all his development has slowed right down. If I could think of an adjective that means slower than glacial, I’d use that, but I can’t and you’ll get my drift (no pun intended).

This would be hard enough to take were it not for the fact that Boo lost his 2 hours of nursery one-to-one on the days he’s there in early July. This two hours bought dedicated support to do one physio session to complement what I go at home each day, time for feeding him and settling him to sleep. It was working quite well, but he needed more time and we found out there was another pot of money for children with acute medical needs we could apply for that would buy just that if we were successfully awarded it. But instead of applying to the old fund to tide him over until the deadline for applications to the other grant scheme, the nursery, well, didn’t. So he went without. I found out just a couple of days before this happened and was devastated.

I have been utterly miserable for weeks and my working mum guilt (acute at the best of times despite my determination to work if I can to support us financially and preserve my precarious sanity) has reached unhealthy new heights. I worked shorter days than ever to do as much therapy with him as I could and have worked until gone midnight nearly 7 days a week to make up the time. Not good. I am on my knees.

Anyway, the meeting to decide Boo’s fate was on Monday. So drum roll…

After spending most of Tuesday in tears, as Twitter friends will know, waiting on the decision, I was told he has 3 hours one-to-one until November when we will reapply to the same fund in light of his physical needs then. It is such a huge relief. As always, we’ll take it one step at a time. Our lovely physio is going in on Monday to nursery with me to update his programme for them and we will see how it goes. If nursery  doesn’t work for Boo longer term or I feel his development is suffering, I will pull him out. But if we can get him into mainstream education, surrounded by neurotypical kids of the same age, it’s got to be good for him.


Mr Boo's first piece of nursery artwork

For now, though, I’m just thinking about the next few weeks. And Monday’s decision is not just good news, it’s fabulous news! And to top it off The Grumposaur and I got to celebrate in style by using the meal for two with wine I won at a local pub-cum-Thai restaurant in the school raffle. It was lovely, despite both being knackered by 21.30, to spend time together on our second night out in 17 nearly months.

Now on to The Play Agenda. I started the summer hols in style by taking a day off work on Thursday when Boo was in nursery to take Sissyboo to Legoland as a special Mummy and daughter best big sister, end of school year great. I really didn’t know how it was going to go. I’d never been before and the talk of the crowds, queues and expense made me nervous. And then the M3 and M4 had accidents on them. It looked like it was going to be a disaster. It wasn’t.

We had the Best. Day. Ever. We paid using Tesco vouchers, which got us in considerably cheaper than paying on the day or even online in advance and which also enabled us to head straight past the queues when we arrived. I’d taken a towel for the wet rides (we got soaked on the first Viking ride at the start of the day – whose dumb idea was it to wear canvas shoes?) and a swimming costume for Sissyboo for the heaving but cooling splash park in the newish Duplo World. I could have been really organised and taken a picnic but as there was just us and no one to hold bags as we were thrown about on the rides I thought I’d treat us to a meal at one of the all you can eat restaurants, which was very good.

The queues were moderate (between 10 and 30 mins). Some rides had longer lines but we just didn’t go on them. And fortunately Sissyboo really likes Lego (oddly, I think some kids there didn’t), so we spent a lot of time looking at the exhibits (the Star Wars one fascinated both of us), making things and watching stunt and puppet shows and a 4-D Lego short film, which, apart from he super scary dragon rollercoaster that Sissyboo laughed hysterically throughout, put the biggest smile on her face.

We were gone from 8.15 until 7.15, despite only having gone on about half the rides, and came back completely exhausted and happy. I firmly believe that you don’t need to spend a fortune to entertain your kids but this was a one-off. It was my way of saying thank you to Sissyboo for bearing  with so much this year and looking after her brother so well. It’s a day neither of us will forget in a hurry. And I have lots of photos to prove it.

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Today the Boos and I had a much more low-key day. We went to the library and got Boo his first library card. Big day! Sissyboo, meanwhile, joined the summer reading Creepy House challenge. She has to read and rate 6 library books of her choice over the holidays and gets various little prizes (stickers, keyrings and a medal as she progresses). She is so excited about starting the first book tonight.

Then I finally found the one remaining paddling pool in Surrey after ours punctured irreparably  last week and the Boos splashed about and played in the sandpit in the garden for hours. Our garden is tiny and we live very near a huge park, which is fabulous, if ridiculously busy, in this weather. One of my goals for the summer is to make sure we use our garden more. It’s small but it’s hardly as though the Boos are forming a football team. And Boo loved doing his physio outside. A change of scene makes such a difference when you are trying to work on two-handed holding in sitting for the 8th month in a row. Boo looked like he was on day release from prison. I felt similarly.

It’s been an exhausting week. It started off pretty rough but has got better and better. I’m fit to drop and glad the weekend is around the corner. This will include Boo’s hydro, Sissyboo’s long overdue haircut, some holiday preparation, work (boo hiss, I’m still so behind) and me cheering on some amazing Bliss fundraisers in the London Triathlon on Sunday.

I hope your week has been fun. Please do share any good news you’ve had in the comments box below. The Boos and I love to hear from you.

School’s Out and My Little Girl’s All Grown Up

Surrey schools finish for the summer holidays today and when the bell goes at 13:30, Sissyboo will finish her reception year. I cannot believe how quickly the time has gone. It seems only five minutes ago that I was sewing on a gazillion name labels (repeat after me: iron on next time; iron on, OK?), getting school uniform and hoping she wouldn’t grow out of her Clark’s shoes too quickly.

Then came the bewildering two settling in weeks of alternate mornings and afternoons depending on which half of the alphabet your child’s surname fell into, the colour of your birthstone and whether or not there was a ‘r’ in the month. I swear it was designed to be as awkward as possible to test parents’ organisational skills. These would be much needed throughout the year as we were instructed to make innovational outfits for space week, come up with fundraising ideas for Comic Relief, while making cakes for the Christmas Fair, a nativity outfit, more cakes for another fair, designing Christmas cards in October, filling jam jars with goodies about ten times across the year, making more cakes for the summer fete, conjuring an Easter bonnet, making more cakes, and a hundred other demands I have repressed for my own sanity, all with a generous 24 hours notice.

Maybe it’s because the school’s kept us all so busy this year that the time has passed so quickly. Sissyboo started reception with a dress that was practically down by her ankles and is now an inch above her knees. She knew the alphabet and basic jolly phonics, and could count reasonably. She can now read quite well, recognise and write numbers up to 20 and do some basic addition and subtraction. She has gone from a shy girl to a still fundamentally guarded, but much more confident and try anything kind of girl.

She has grown in so many ways. All of her class have. But not all of them have done so with the kinds of difficulties Sissyboo has. Since she started school she has had to increasingly face up to the reality of having a little brother who needs more of her mummy’s attention than most younger siblings. She has had to put up with mummy and Boo going AWOL on occasion as we were hospitalised in three different hospitals over Christmas. She has had to watch her brother having seizures and see him scream while they drew bloods for what felt like an hour when they (wrongly, thank God) thought he had contracted meningitis again. She has had to see the younger siblings of two of her nursery friends and now classmates leapfrog spectacularly over her little brother in terms of their physical development despite the fact that both are six months younger. She knows her brother may never walk. She knows he might never be able to go to her school. She doesn’t think it’s OK.

Things have been really hard on her: harder than I care to think about most of the time, and harder (mercifully) than I think she knows much of the time. Over the course of the past year, there have been many blips. Her behaviour (usually very good and mature for a five-year-old) has descended into shouting, hitting and tantrums of the kind I have never seen. Every so often she can’t sleep for a week or so at a time and starts wetting herself. These things don’t always seem Boo-related immediately. They usually transpire to be.

As I’ve said before on the blog, one of the hardest things about our new life is coming to terms with its impact on Sissyboo. At times, I have felt like I have lost her. I often feel as though I have let her down because I can’t spend as much time with her as I’d like to or do all the things she needs me to or would like to. I know she feels like this too sometimes, but I know she doesn’t love me any less for that and, perhaps most impressively of all, I know that she doesn’t for a second take it out on her brother. I have never seen two children love each other as much the Boos.

Somehow, she has got through all of this. She hasn’t just survived (as I think I have); she has triumphed. I know her journey with Boo, like ours, is only just beginning. As it unfolds it will present new and probably unexpected challenges. But for now I am going to take the time to be proud of my remarkable (not-so-little) girl and all that she has achieved this year. I am one lucky Mummy.

A Note to NICU me

Boo is teething. It’s awful. He is dribbling through about a vest an hour and waking himself up many times in the night choking on the copious amounts of saliva he’s producing. He’s biting everything in sight (including me), has a fever (I know lots of people say that’s not a teething sign and it never was with Sissyboo, but he has had a temperature of 39 degrees every time one of his 9 teeth has come through so far) and he won’t eat (most unlike him). One tooth popped through this morning; the gum above it looks fit to burst. So hopefully we’re now on the home straight for this bout.

It’s made for a pretty difficult couple of days, especially today as I had the kids on my own while The Grumposaur was away. As I sit here hoping Boo’s settling down for the night, I feel completely frazzled from four hours’ sleep and lots of screaming in the day. But then I remember those days in the NICU and SCBU when I would have given a limb and a kidney for these kinds of ‘problems’, annoying and draining though they are.
It’s spurred me on to think about what I would go back and tell NICU me if I could. Honestly, I’d need a few hours to do the job properly and I would probably run me a nice bath and give me a bottle of wine to drink while I gave myself the benefit of my considerable and immodest wisdom. But in essence, I would tell myself just a few things…
1) It will get better. The pain, the guilt, the trauma never entirely go away and these devils will rear their ugly little heads when you least expect it, but things will never be as raw again. You will get home. You will feel happier than you ever thought possible.
2) You are not a pain in the arse for asking questions or phoning the NICU in the middle of the night if you want to. (I only did the latter once on the night we thought Boo might die but I wanted to phone every night around 2am and stupidly felt I shouldn’t trouble the unit.) It’s your right to be concerned about your child’s welfare and to make consultants answer questions they want to skirt. Some may think you’re a pest, but most you won’t ever see again so who cares, and some will even respect you for it. 
3) Trust your instincts. You might not always be right but you owe it to yourself and to your child to follow through on your feelings. You will be right when it counts (like when they threaten to re-ventilate Boo and you just know it’s a gastric not a lung problem). It took a lot of guts to stand your ground on this but you did. He wasn’t re-ventilated. You should have felt able to speak up more often.
4) Don’t give in to the pressures of others to share more than you want to or to call every day if you don’t feel able to. It’s a cliche to say there are no rule books for these situations, but you need to set rules for how people can expect you to interact with them during this time. You will answer every text, phone call and email as if you were at work. You’re not and it will make everything harder for you. You could have made life easier for yourself. People would have got it. And if they didn’t, they probably weren’t worrying about.
5) You are stronger than you ever knew you could be. You will not be part of one of the happily ever after NICU stories you cling to. You know (almost instinctively) months before it becomes all too apparent that this will be the case. Life will be hard and never the same again. But you know what? You will deal with it, not just because you have to but because your new normal, your newly configured, beautiful, maddening and hilarious family will motivate you to do things you never thought you would and to be a better person. You won’t always get it right, of course, but no one can ever accuse you of not trying. And if they do, don’t ever bother to speak to them again.
6) You will smile and laugh every day after you leave the NICU even on a few days the horrors of which can only be described by the worst kind of expletives. And you won’t smile and laugh once or twice a day. You will do it a lot.
7) You are not alone. No one’s situation is exactly like yours, of course, but you will learn to reach out to others in the real and virtual world in a way you never quite could but should have tried harder to do in the NICU. You will start a blog. And the people you meet through that blog, in similar but importantly different ways from the many friends who have buoyed you up for the last 16 months, will sustain you, help, advise and be kind to you in ways that will make anything good and worth having seem possible.
Things will be OK, you know. One day you will be seriously annoyed by a couple of nights broken sleep because your son is teething. And then you’ll remember how far you’ve all come.

Good News Friday #14: Crazy Times

I don’t know whether it’s the uncharacteristic heat that’s addled my brain or just that this week has been so full of stuff, but I nearly forgot it was Friday today. Surely it must be Wednesday.

It’s a feeling I have a lot lately – of time accelerating vertiginously. Yesterday – OK last September, but it feels like yesterday – Sissyboo started reception. This week and next is full of end of year celebrations at school. So far this week we’ve had a school leavers’ service (lots of tears from year 2 parents) and a class picnic. Today it’s the end of term show at her dance school, and next week we have a reception concert, BFG performance, non-uniform day and then 6 weeks before year 1 starts. Phew!

It’s all good, of course. I’ve had to work super late most nights to catch up with time out of work for school stuff, but it’s been lovely to be able to celebrate the end of a tough and, I hope, good year for Sissyboo. (More on that next week when her reception year is well and truly done.)

But at the same time that time has sped up more than I ever thought possible, it has also slowed. Boo refuses to keep up with the demands of the passage of time. Boo time, as we’ve not entirely lovingly learned to call it, is glacial and idiosyncratic. I have been trying to get him to sit for over 10 months. 10 months, people!  In that time his sister had gone from newborn to crawling and standing. Sometimes I feel like I am stuck in the longest Groundhog Day ever. Bill Murray had it good, I’m telling you. He didn’t know he was born.

Still, this is Good News Friday, right? For all Boo’s slowness he is still inexplicably happy, funny, sociable and adorable. I say this not to brag (OK, I am bragging a bit) but because it is good news in so many ways, including therapeutically. He does get frustrated but he is easy to motivate because of his temperament, and this means he is always willing to try new things.

So this week his physio suggested a bunch of new exercises on a Swiss ball to attempt to build the core strength that is currently the main impediment to his progress. We are improvising with Sissyboo’s space hopper and it’s hilarious fun. It’s too early to say whether it’s working but a simple change to the daily grind makes an enormous difference to me and it just might to Boo too. I’ll let you know, of course.

And finally in good news, we’ve been provisionally offered a weekly session at a conductive education centre from September. I have to visit to see what I think and the commitment it will take excites and scares me in equal measure. But as Sissyboo has taught me this week, time and tide wait for no one. And the Boos and I, well…we’re doing our best to be ready.

OK. That’s my good news, so over to you. I love hearing your news in the comments below, on my FB page or on Twitter. Do get in touch. It makes my weekend!

Relaxing into Summer with the Play Agenda


Yesterday I went to a leavers’ service at the church my daughter’s infant school is attached to. (She has a community – i.e. non-church – place at a C of E school.) It was lovely. It was also a vivid reminder of two things. First, that given the extraordinary pace her reception year has flown, she too will be shaking the vicar’s hand bye bye in the blink of an eye. Second, that the school holidays are well and truly around the corner.

So, time to start planning. Actually, of necessity, I’ve been planning parts of the holidays for months. Because I work. 6 weeks with no school equals more juggling than usual for working parents and trading in favours stored up all year so that Sissyboo has good child care when I can’t look after her. But I still have all Fridays with her, all weekends, some random week days and two weeks (our second two-week holiday in 18 years – and the first was punctuated by a funeral) to spend with both Boos. And I am determined to make the best of it.

But I am also determined not to be too determined. Before last summer, I had not experienced the pleasures and pains of the summer holiday. Sissyboo was at nursery four days a week from 6 months of age and we took holidays throughout the year at various times and never in a six week block.

Last summer was going to be different. Boo would be born mid-June, I would take his sister out of nursery in mid-July and we would have a happily ever after holiday before her first year at school. But then Boo arrived on 2 April and all plans went to pot. She needed nursery – the routine, the structure, the familiarity – to deal with the overturning of our world. Even when Boo was home (mid-May) life was far from normal. I couldn’t take her to medical appointments. I couldn’t let her hear the things I could barely bear to hear.

So her summer holiday started later than planned in early August when I pulled her out of nursery and, since she didn’t start school until mid-September (and then only half days for a few weeks), she had a six-week break.

I had high hopes for it. I would make everything up to her and spend much-needed time with my rapidly growing girl. This would be a holiday to remember. With the exception of a few fun trips and moments, it was an unmitigated disaster. The past few months had evidently and completely understandably caught up with her and, combined with the anxiety she developed about leaving the nursery she had loved for 4 years and moving onto big school, my lovely little girl turned into someone I didn’t recognise. She had tantrums, screamed, shouted, was rude, touchy and otherwise impossible. I can feel might heart beating faster just remembering it. Add to that a prem baby with emerging complex health needs, umpteen appointments, breastfeeding and acute sleep deprivation and, well, let’s just say it wasn’t much fun.

The danger with this summer, then, is that I will try to turn this into a means of compensating for last year. But it’s a trap I’m not going to fall into this time. I am not going to micro-manage the holidays. It won’t work for us (too many other aspects of our lives, particularly around Boo and his therapies etc. have to be). I won’t go into my default mode and make lists to be ticked off. My lists are impossibly long and seem to exist to make me feel bad. I am not going to set myself up to fail. (Note to self: keep re-reading that sentence, Mrboosmum.)

Instead, I’m going to set up some goals (achievable, enjoyable goals, I hope) and try to get a bit of balance in our weeks with a firm focus on fun and flexibility. To keep me honest about this, I am joining in with The Play Agenda, launched by the lovely Leoarna at Not Different But Interesting. Do pop over and see what she’s doing and join in. My play agenda will look different from many others’, I think, simply by virtue of the fact I work, but I am no less committed to us all having a good time for that. My plan is that I’ll join the linky each week by adding our holiday tit-bits to my weekly Good News Friday posts. Let’s hope play proves to be good news!

So here are my general goals:

1) To have one big day out (to a splash park, country house etc.) each week that will engage both kids (5 1/2 year old and 1 year old with additional needs).

2) To make sure I do one activity each week with Sissyboo on her own (first, and likely to be the most extreme) is a trip to Legoland next Thursday. Others might involve doing a painting or going for a walk. (Our much loved Homestart visits stop for a month over August but I am determined to find ways of having at least a bit of this one-to-one time with her. She benefits so much from it. So do I!)

3) To be flexible about Boo’s therapy without compromising it, so to try doing his physio in our local park or in the garden etc.

4) To meet with friends (grown-up and little) once a week (this is as much for my sanity as for the kids’ enjoyment and one of the great pleasures of the summer for me).

5) To get the kids outdoors and specifically in our small, but functional and underused back garden.

6) To finish the Oliver Twist Victorian puppet show I have been doing with Sissyboo on and off for 6 months…

7) To keep Sissyboo’s reading, writing and maths (we’re a little behind here) skills on the boil but in ways that don’t seem school-like (role play etc.)

8) To do crafts and messy play with both kids (not hard to achieve with Sissyboo, you cannot put anything into the recycling without her fishing it out and turning it into a model) each week. Boo loves messy play but I don’t often find time for it at home.

10) To give Sissyboo time to chill every day and to be able to set part of the play agenda herself each week.

11) To keep her riding on her bike to keep up the momentum.

12) To not sweat every day and be flexible with all plans. Life will get in the way. Kids will get ill and have tantrums.

13) To keep the blog ticking over, but maybe slacking off a bit on our two-week break and hoping you lovely readers don’t abandon me.

14) To take lots of photos of what we’ve been up to (and at some point, print the blooming things out!) as a record of what we’ve done.

I think that’s more than enough for us, given the time therapy, appointments, battling with local services, oh and work, will take up.

I’ll let you know how it goes and look forward to hearing your plans.

Taming the Green-Eyed Monster


Ok, you probably won’t like me much when you’ve read this post. I’m not desperately fond of myself at the moment, either. But the deal I made with myself was that this blog would be me warts and all. Otherwise, what’s the point?

So here goes. Me in all my most resplendent unattractiveness. I have been wallowing in self-pity for much of the day. Boo seems to have plateaued developmentally. His low trunk tone is stopping him getting much further and no matter what or how much I do, I can’t seem to fix this. I am desperate for him to sit. For the hope that him sitting would bring me. The hope that some gross motor milestones might actually be his for the taking. But I’m also a bit desperate for my back, too, if I’m honest. It’s not coping fabulously at the moment.

I hoped when I told the physio this morning about my fears that he was slowing down that she’d tell me I was being daft. She didn’t. She agreed. She referred us to wheelchair services for an adjusted buggy. We talked about how desperately we need our OT referrals to come in. (We have be one the waiting lists for some time.) We talked about how the fact he doesn’t currently have adequate seating is keeping him back and may cause damage to his back. While trying to process all this I spent ages on the phone looking into conductive education and feeling overwhelmed by the prospect and commitment it would take. Let me be clear, I am 100 per cent committed to Boo’s health as it is, but there’s not much slack in the system to take up for new things. Something would have to go. It can’t be precious time with Sissyboo, or, unless we totally reconfigure life and up sticks and move schools etc., my work. Maybe it has to be my sanity. Then a bunch of trivial things went wrong. A bit fell off the car etc. You get the picture. Wallow, wallow, self-pity, wallow, wallow. See what I mean? Not very attractive. It gets worse…

I had to get Sissyboo from school and I stared hard at my iPhone as if I was doing some really importantly work (actually I was tweeting, maybe that constitutes important work, in a way). I didn’t want to be approached by anyone. I couldn’t stand even overhearing their conversations. Like the Mum who was saying ‘what a nightmare it was’ and how ‘stressed’ she was about trading in their colossal 4×4 for another new 4×4, or the other parent who was irritated that their 6-year old didn’t do as well in their grade 2 piano exam as they’d hoped, or another who said she and hubby had been out so many times this month that they’d run out of babysitters and would have to miss out on a dinner party next week. None of this is made up.

I gritted my teeth and tweeted harder, hoping the tears welling up in my eyes wouldn’t show behind my sunglasses. I should have such nightmares, I thought. You don’t want to know what mine are like. I don ‘t get them every night. But then I don’t sleep much. Boo may never walk, let alone tickle the ivories and if The Grumposaur and I go out again before I’m 50 (still some years away, I hasten to add), well, I’ll be amazed.

Walk a day in my shoes, I internally screamed. And then my anger turned to me. Who the heck was I to belittle others’ problems? I may never have owned a 4×4 and my dinner party days are long since over, but I have had the luxury of being a parent to a neurotypical child before having Boo. I got stressed at times and life often felt difficult. I didn’t know I was born.

I’m glad I had that experience. And I wouldn’t really want others to feel bad about having it good. Because to feel that way, you’d have to have had a glimpse of the bad. And I would do anything I could to stop others having it bad. Like us and so many families like us or in much worse situations than us. I am glad the playground mums’ problems extended to cars, pianos and nights out and not anything worse. I really was.

By contrast, I will never be glad that Boo was premature. Never be glad that he is disabled. Never be glad that Sissyboo has to be affected by things that no child should be affected by. But then I looked at Boo’s dopey, sleepy happy grin (aka his seven dwarfs grin) after I gave him his bedtime bottle just now as Sissyboo read me her school home reader and I cannot imagine being happier.

Enough of the jealousy, then. Life is hard as hell some days. And I refuse to pretend on my blog, as I often have to in life, that it isn’t. But I really wouldn’t want it to he different. Let it go, Mrboosmum. This is your world now and it may not all be trees of green and skies of blue, but it’s still wonderful.

Milestones Aren’t Just for the Little People


If you’ve read this blog before, you will know that milestones figure hugely in Boo Land. I wish they didn’t. I didn’t know how lucky we were with Sissyboo. She was sleeping through at 3 months, sitting at 5, crawling and pulling to stand at 8. She walked at 12 months. Spoke in complete sentences, well paragraphs, really, by 2 years, and otherwise was a little miracle.

But I didn’t know that at the time. Not until I had Boo and saw/see him struggle to do any of these things. At 13 months corrected (15 1/2 months actual) he cannot do one of them. I have spent 12 months trying to teach him to roll. Not happening. I think he will sit at some point, but I may be drawing my pension by the time that happens. Helping him to achieve these elusive goals takes up so much of my time and mental energy. All that physio and therapeutic handling. I spend hours and hours doing it every single damn day.

And if there’s a choice between doing something with Sissyboo or fitting in an extra bit of physio with Boo, it’s always a hard call. She doesn’t need me in the quite the same ways as he does. His needs are more obvious and more acute. But she needs me, just as I need her. She is the first light of my life. And even Boo cannot eclipse that.

Juggling the competing needs of Sissyboo and her brother is one of the hardest things I have had to deal with since his birth and it causes me much guilt and sadness on a daily basis. In recent months, much of this guilt and sadness has centred around something really trivial, in the grand scheme of things: her bike riding, or rather, her inability to ride without stabilisers.

Now she’s 5 1/2 and quite honestly, I didn’t think it mattered all that much. Although she’s had a bike for ages and most of her friends got off the stabilisers in the past year, in my mind, she’s still a wee thing. Frankly, it didn’t seem very important to me. In some ways, it still doesn’t. But for the Grumposaur, this was a huge deal. Saying he is a keen cyclist doesn’t cut it. As he frequently tells me, there are only three important things in his life: the three of us, his job, and the many bikes he owns. I don’t think I’ve put that list in the right order, by the way.

Riding without stabilisers is always a rite of passage, but it became symbolic of all sort of things in Sissyboo’s case. Boo probably won’t be, as his Dad hoped pre-birth, the next Bradley Wiggins. He may never be able to pedal on a bike. So getting Sissyboo over the hurdle of riding without stabilisers became a bit of a Grumposaur mission. She might be the next Nicole Cook. And it should have been easy to get her turning the pedals, right? This wasn’t a milestone that necessitated rerouting round brain damage or endless hospital appointments, after all.

Except Sissyboo resisted at every step. She was nervous. She didn’t care (or actually, I think she realised how much it mattered to her Dad and that worried her). We didn’t give it/her enough time, because we were busy trying to reroute around her brother’s brain damage. And then she outgrew her bike. It was clearly too small for her (and had never fitted her well in the first place, I might add.)

So we held out the promise of a new bike as a treat if she learned to ride without stabilisers. So stupid. She wasn’t fussed and if she minded at all, then that was too much pressure to put on her. So one day, The Grumposaur just bought her the new bike anyway. She was thrilled and last weekend, on the day we were celebrating as my birthday, we went to the park to try it out.

She didn’t want me to let go of her. She wobbled a lot. She didn’t want to let anyone down. She was convinced she couldn’t do it. But a new bike, her brother watching, lots of encouragement and the promise of honeycomb ice cream and she rode 3 seconds without Mummy holding on. Then she rode 5 seconds, then 10, then 20, then 30, then a minute. She stopped after 60 seconds. 60 seconds that felt like 5 minutes. She’d proved her point. (Boy had she proved her point.) She’d deserved that ice cream and asked if she could have it. She did. And I was so proud of her.

It was a truly magic moment, and a reminder to me that she needs us as much as her brother, even if the stakes don’t obviously seem quite so high. Trying to make sure that we don’t let her down as we work with and advocate for her brother is never going to be easy, but it’s our job. And the pay-offs are huge.

Well done, Sissyboo! Your courage and sensitivity amaze us every day. And if your brother has an ounce of your determination and good-naturedness, then his future is bright.

Good News Friday #13

Sorry this is going up a bit late (again), but you see my first bit of good news this week is that Collin Brewer (the councillor who talked about doing away with disabled children like lambs smashed against brick walls) has resigned. And I had to write about it. So I messed up my own blogging schedule by writing a post about that. But you know, it was important and good news, so hopefully worth delaying this.

This week’s had it’s challenges, I must say. Boo has lost his one-to-one at nursery as we move from one funding pot to another. The new funding should kick in in 2 weeks and buy him more one-to-one each day, but in the meantime I’m putting him in nursery for as short a day as possible on the days I work to have him with boot camp mummy for as long as possible. The result: working until the day after today most nights. But I wouldn’t do things differently. However, the tiredness (although not as bad as you’d think) certainly made an unexpected appointment to discuss an EEG Boo had 5 weeks ago and we were told was OK (98% normal) a bit harder to take. Turned out it was a wasted appointment where I was just told the same things again rather than the bad news I feared I’d been called in to receive. Never have I been so glad of a wasted appointment.

In other good news, I really feel a huge weight has been lifted from my shoulders after telling so many people I work with about Boo. Getting through the first day of last week’s conference, during which over a hundred people asked me how Boo was doing, was pretty hard. But it is such a relief to know people know now and to see that it hasn’t changed anything in terms of how they see me. I’m still me. Just a slightly more ragged and, in other ways, more improved me.

I’m happy to report that Sissyboo is doing well at school and outside school (post about that planned for Monday for Magic Moments), although her maths needs work (in other words, Mummy doesn’t spend time doing numbers with her because we are too busy). I cannot believe she has only a few days left in reception. How did that happen?

What else? Oh yes, the sun in shining and I had a lovely day with Boo and some friends from the US at Dover Castle on Tuesday. (Note to self, lugging a 10kg, non trunk-controlled non-toddling toddler to the top of the Great Tower is not great for your back!)  I even got out for a run. My fitness has plummeted since getting injured after my half marathon and going back to work so let’s hope I don’t get that London Marathon ballot place. No: let’s hope I do. I will get fit again.

Oh and I was listed in the Tots100 Fresh Five this week by the lovely Mummy Pink Wellies. I am humbled, gobsmacked and otherwise thrilled.

I hope you have found lots of sunshine through the clouds too, this week. I love hearing from you. So please share your good news below.