Tag Archives: premature birth

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

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When Bounty Brings Other Gifts

As many of you will know Mumsnet has recently introduced a new and much-supported campaign, brilliantly called the Bounty Mutiny (I do love a good pun), designed to prevent commercial reps entering maternity wards at a sometimes difficult and always emotional times to new mothers and selling them products. Some of the stories of harrassment told by women who had to deal with aggressive saleswomen in these valuable and vulnerable moments make for very uncomfortable reading and are clearly utterly unacceptable.

I recognise something of these stories in my own experience of having had Sissyboo. After a difficult labour that ended with an emergency c-section and much blood loss, the last thing I wanted was to be asked a gazillion questions by a stranger and offered various services I didn’t want. I remember buying an exhorbitant footprint moudling of Sissyboo’s feet from her just to get her to go away. We have a lovely ceramics cafe near our house and I had planned to go there to get a tile with her footprints on when we’d come home from the hospital. It would have been at least as nice a keepsake for half the price and it would have been lovely experience for us to share.  (I did it with Boo on the day he should have been born.) This, by contrast, was not a happy experience. But to be honest, in the grand scheme of things, the annoyance was fairly minor. And I still proudly hang the tile on my bedroom wall next to Boo’s.

As people who read my blog regularly will know, I am passionate about the many causes and political campaigns I back. And I have read some very powerful posts by experienced and eloquent bloggers, especially Emma at Me, the Man and the Baby, on this subject. At the same time, I am very sympathetic to recent posts on other favourite blogs, including Not Even a Bag of Sugar and Crazy With Twins, who have spoken out in opposition to the campaign.

I’m not a sitting on the fence kind of person, usually, but I abstain on this. The first reason is purely pragmatic. There are so many other even bigger and sometimes frankly more devastating problems in ante- post- and neonatal care that exercise me on an hourly basis, that I feel I have to pick my battles. And this skirmish, though one I totally understand and back in principle, is not one I feel I want to be stood up and counted in for.

There’s also another reason and that’s what led me to blog about the subject, following a Twitter conversation with Emma at Me, the Man and the Baby last week. And that is my second experience with a Bounty rep, aka an extemely kind and compassionate woman, who gave me a literal, as well as figurative, shoulder to cry on at one of the worst moments in my lives.

Mr Boo, as you may already know, was born at 29 weeks. I had no warning. I was 65 miles from home interviewing at work and was whisked off in a speeding ambulance to a hospital I’d never been to before when I went into spontaneous labour. After giving birth to Boo he was put in an incubator and taken straight to the NICU. We waited for my placenta to do the right thing, but it didn’t. The first failed attempt at manual removal left me with heavy blood loss and I ended up in the operating theatre, sobbing my way through a removal under epidural. I spent all of that night alone, missing my partner and daughter, in shock, hoping they wouldn’t need to give me the threatened blood transfusion, emailing work colleagues on my iPhone to explain what had happened and reading Not Even a Bag of Sugar.

When I’d gone into labour, I’d asked The Grumposaur to bring me a bag of clothes. I was in my interview finery and had no maternity bag packed. In his panic, he brought me a pair of pyjamas (phew) and lots of clothes for Boo, who couldn’t wear them (or any clothes, for that matter) until many weeks later. He bought no toiletries. I didn’t have a towel or a toothbrush, shower gel or a hairbrush.

It was while we were waiting for the blood loss to stop and the epidural to wear off so that I could see the little boy, whose face I couldn’t even remember, when the Bounty rep came in. Despite my extreme loneliness, she was the last person I wanted to see. But I will always think of her now as guardian angel of sorts.

Within seconds of entering the room they’d put me in so I didn’t have to be around new mums and their babies, she realised I must have a baby in special care. She introduced herself not as the Bounty rep that the familiar white envelope she was carrying announced her to be, but as the mum of premature twins. She asked me what had  happened and we talked and shared stories.

I learned more about having premature babies from her in a 10 minute chat than I had learned in my 35 years of existence to date. Her twins were nearly 2. They both were delayed but doing well, although I think one had long-term problems probably not too disimilar from Boo’s now. She asked if Boo had had a brain bleed (I’d no idea what a risk these were for premmies and how much they would come to alter our lives). But nothing she said frightened me. She was calm, loving, a proud parent and living proof it would be OK. Whatever happened, it would be OK.

She told me what to ask the doctors. She advised me on practicalities. She saw my chaotic hospital bag and raided unopened Bounty envelopes to get me lots of packets of baby wipes, Johnson’s shampoo and three hooded, newborn Persil towels so that I could have a shower.

She said she looked forward to seeing me the day after to catch up and find out how Boo was doing. In the event, and after much deliberation, I’d gone home. I never saw her again, but the impression she made on me was as indelible as Sissyboo’s footpring moudling and I will always be grateful to her.

No doubt readers will already have made up their mind about which side of the Bounty Mutiny they are on before reading this post. Whatever happens, though, I just hope that people remember that not all reps are the same.

The bounty some of them bring with them is just priceless.

Breaking out of Baby Boot Camp

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We have a bit of a vexed relationship with physical activity in Boo Land. Obviously, we realise it’s important to exercise to stay healthy, and as I’ve blogged about before, I’ve found running (to my complete surprise) to be a real mental pick me up since Mr Boo’s birth.

As a child I was never really that into sports. I liked skipping and being outside, but I was always happiest locked away with a book, or better still, a stack of books, or painting, or messing about on a musical instrument. I was a bit hermit-like as a child because, quite honestly, real life wasn’t as much fun as the one conjured in my imagination via books, films, music or art. My parents didn’t discourage me and rather liked that I was a bit of a swot.

Sissyboo is just the same. She pours over books and films and could make things from virtual any medium or object from morning until night. But so that she’s not too much like me (I really wouldn’t wish that on her or anyone), we’ve tried to encourage her to get into physical activities to build her confidence and keep her healthy. But unless it’s swimming or dancing (both of which she loves and is good at in her wild, excited kind of way) she’s not terribly interested. Try as we might, she point bank refuses to ride her bike, partly in protest that her Dad spends rather a lot on time on all of his. Oh yes, he has a few. OK, a lot. They are the 5th, 6th, 7th, 8th, 9th and 10th members of our family.

It’s all about balance isn’t it, I suppose? I’m not sure, judging by Sissyboo’s ball skills (at 5, she reads like a 6-7 year old and catches like a 3-4 year old) that we have got it right. I’ve always gone along with her interests rather than force others on her. But I suppose it helps that her interests and mine chime with one another. If I’m honest, I’d much rather she grew up like Roald Dahl’s Matilda (her literary heroine) than Martina Hingis.

Hmm. I hadn’t expected to write that sentence. Maybe we haven’t really been going with the flow in bringing up Sissyboo. I can see we’ve made certain choices, set certain priorities. She’s a lovely and well-rounded person (much more than i was at her age) so it seems to have worked out OK, so far. Phew! We’ve got away with it.

But what about when choices are made for you? By circumstance. By illness. By disability. Where you have to get with a programme (or in our case several programmes of therapy and intervention) to achieve just some the building blocks of childhood development, let alone to finesse them. What happens when you don’t have the luxury of choosing how to parent or what aspects of your child’s personality you want to nurture?

Physio is a huge presence in our lives. We have been recommended to have at least 2 30 plus minute intensive physio sessions with Mr Boo every day. In between, at every nappy change, I stretch his hamstrings and have learned to ‘handle’ Boo therapeutically. (For the record, I hate that I have to ‘handle’ my baby as opposed to just hold him.) So once you take these sessions out of the day, add on milk feeds and meals, and a couple of naps, the day is kind of gone and there’s little time for anything else.

Having thought I would go with the flow with Boo–that I wouldn’t impose a routine on him, that I would cultivate his love of playing, music and words–we live instead in a baby boot camp. The second thing Sissyboo said to me when she got out of school yesterday was ‘Has Boo done his exercises today?’ Yes (cringe), I am that Mum. Call me Major Boosmum, Sir, yes Sir!

Therapy looms large in this house, not least over poor Sissyboo, hence her question yesterday. She asked me about Boo’s exercises because she wanted to know if his physio was out of the way to make space for more fun things involving her. That makes me sad. I truly fear the consequences of not doing enough physio with Boo, of not filling every minute with therapeutically-minded handling and positioning that might help him attain his physical milestones. But Sissyboo needs me too. Her development (social, emotional, intellectual and physical) is just as important. The juggling is so hard. I wish I knew how to get it right. (Answers on a virtual postcard, please.)

In the half-term holidays last week I really tried to get something nearer to equilibrium. I made sure there were times every day when I did things that were solely organised around Sissyboo. We played outdoors, went to the park, but there was also lots of drawing, making, and reading. Best of all, we made a trip to the theatre for an audience participation production of Wind in the Willows. We had so much fun.

It was also a revelation. Sissyboo loved learning the songs and joining in with the show. She laughed at Toad’s crossdressing, snarled and hissed at the weasels and cheered on Moley, Ratty and Badger as they triumphed over the baddies and reclaimed Toad Hall and the riverbank. I could barely watch the show for watching her excitement.

But the bigger revelation was when I turned to look at Boo who I’d dragged along, and who I worried should probably be vainly practising his rolling for the 9th month in a row rather than sitting scrunched up on my lap in a germ-ridden theatre. He was hysterical. Totally and utterly I-needed-to-remind-him-to-breathe hysterical. He was laughing at the antics on the stage, squealing as we sang and giggling at the faces his sister was pulling. I swear he got at least as much out of the experience as the rest of us. And why wouldn’t he? This is no revelation. He’s my son and Sissyboo’s brother, after all. This is our idea of a perfect day out. Why should he be any different?

And then it hit me. Yes, Boo needs physio. Yes, he needs to be consistently handled in a therapeutic way. But cognitively, for the moment at least, Boo seems to be engaging with the world as a child his age should. This may change, we know that, but for now, his brain is several months ahead of his body. And I have been neglecting this aspect of his development when compared to the astonishing amounts of time (although I never feel I do enough) spent on reaching those elusive bloody milestones.

Sure I sing to him (a lot) and talk to him (a lot). (Like the sound of my own voice? Moi?) I do read him books (he loves noisy ones, like the edition of Room on the Broom that has sound effects), but I snatch these moments guiltily as if they’re more for me than for him, as if we’re doing something naughty.

How ridiculous! Cognitive workouts are just as important as physical ones. In not realising that before now, I’ve been stifling aspects of his personality that I want to celebrate, the things that make him my Boo. To my shame, I realise I have been inadvertently doing what I constantly berate others for doing: of seeing him through the lens of the physical challenges he faces rather than through his developing and totally adorable (OK, I’m biased, but honestly, he is) personality.

Baby Boot Camp is going to continue for the foreseeable future, but not, I’ve decided, at the expense of nurturing Boo in other ways.

Thanks Boo. Another lesson has been learned. Right, let’s go blow the dust of your library card, mate.

A Thank You Letter for Volunteers’ Week

This week (1-7 June 2013) is Volunteers’ Week. I couldn’t let this pass without expressing my gratitude for the millions of people who freely give their time, energy and compassion to help others and, in the process, not only contribute billions to the economy but also make millions of individuals’ and families’ lives a whole lot better.

But first, I need to backtrack a little. Last week I participated in a Twitter chat about making time for ourselves as parents. I had blogged about respite last week and, judging by the many comments, tweets and emails I’ve received, this is a pretty hot topic. And whether it’s something we’ve found in our lives, don’t feel we need, or are desperately seeking, it seems to be a subject we all have an opinion on.

I thought I had things to bring to the virtual table when the chat went live. But I am very aware of two things that make such online encounters difficult for me. First I am a new girl on the blogging scene and I am still learning the ropes. But bloggers seriously are the nicest people, so for the most part they help me overcome my insecurities. Until, that is difficulty number two rears its ugly head. My biggest difficulty is fear of difference. I blog in part to connect with others, to find common ground, to feel less isolated. And I do feel much less alone now than I did 8 weeks ago when I started this blog. But then there are those moments when someone says something, meant kindly or innocently, that in my mind, although I’m sure not in theirs, puts up fences between us, between the greener pastures of parenting in general and the wilder terrain of prematurity and special needs childrearing.

This happened during the Twitter chat last weekend when the conversation turned from how we find time for ourselves to making time for our kids. At this point I mentioned my lovely Homestart volunteer who comes over for two or three hours a week, originally to help me get through the especially difficult time when Mr Boo developed infantile spasms, but now to look after Boo to give me a little time each week with Sissyboo to help her with the difficult adjustments she has had to make since her brother was born. Someone responded by saying they wouldn’t be comfortable with such an arrangement. This is completely understandable and, truth be told, I probably would felt the same if someone had told me a few years ago that we would be relying on the generosity of a volunteer in the future.

I left the conversation feeling quite sad: sad that I had been struggling; sad that I wasn’t as self-sufficient as I wanted to be; sad that I needed help; sad, most of all, that my daughter needs help. Sad, if I’m honest, that I didn’t have the luxury of feeling discomfort at the prospect of accepting help.

But after mulling it over for not all that long and chatting about it a bit more with some kind tweeps I got over these feelings and got over myself. I am astonishingly grateful for the help we have and don’t feel ashamed about it at all. And in honour of Volunteers’ Week I thought I’d share just a few of the reasons why I feel this way. I can’t share the name my Homestart volunteer, a wonderfully generous, smart recently retired woman with a long career behind her and more energy than I imagine I will ever have. She doesn’t know that I blog and I blog anonymously anyway. So let’s call her M. This is what I’d like to say to her.

Dear M

I never thought I’d be writing a letter like this. I used to volunteer myself as a teenager for various animal charities. And I always thought that as an adult I would volunteer again. I  am planning to, for Bliss, in the near future. But if I’m honest with you, I never thought I would need a volunteer’s support myself. I’ve always prided myself on my independence and can-do personality. I am lucky enough to have reasonable health and a good job. I come from a loving family (although a widely spread one) and I have some fabulous friends (similarly widely spread). I never expected that I, that my family, would be utterly sideswiped by prematurity and disability, that my beautiful boy would suffer so much in such a short period of time. That the worry and anxiety over his health would see me develop a severe anxiety and depression that would paralyse me and impinge on my abilities to be the mother, partner, colleague and friend I wanted to be. I didn’t realise how fragile my long-won security in life was. How it could break down so fast. How quickly I would morph from the person who always  helped others to the one who needed the help of strangers.

As I fought back tears after weeks of no sleep and watching my son like a hawk in case he fitted again during an appointment with a Health Visitor I was told that I should consider accepting help from an organisation called Homestart which helped families with young children who were struggling in various ways. I was reluctant to consider this. I was worried others might be more deserving of help than us. That we would be taking something we had no right to. I didn’t want to admit I was struggling. But I couldn’t fake it any longer. I was in bits and I was too tired to protest to the suggestion.

A regional co-ordinator came round shortly afterwards and explained what Homestart could do for us: provide a few hours a week where I could nap if I wanted (I never did) or get on top of Mr Boo’s medical admin (a part-time job in itself) or just talk through the challenges we were facing as a family. I still felt awkward, but started to feel excited too. She went away to match us with a volunteer. You.

In the days that passed before you came round for the first time, I thought several times about saying ‘We’re OK now. Thanks, but we don’t need your help.’ But I didn’t. I knew I was lying and my kids needed this as much as I did. That’s how I rationalised it. They would benefit from this too. This wasn’t about me being a bad parent, it was about me being a responsible one.

My nerves about meeting you quickly disappeared. As we chatted that first time we met about our families and our shared professional commitment to education I forgot you were a volunteer and started to think of you as the friend you have become.

Your visits have helped in so many ways. You’ve picked me up on down days, allowed me to take a bit of control over a life complicated by the demands of looking after a little boy who needs 24/7 care. A boy who cannot be left to play independently, who often sleeps dreadfully and who is frequently ill. Most of all, you’ve given me time to spend with my daughter, time when she’s not constantly told ‘after we’ve done Boo’s physio’, ‘after we’ve  gone to the chemist’, ‘after Boo’s had his bottle’. 

You listen to my concerns. You don’t pretend they will go away or diminish their significance. You offer help and advice on local services a d shared ideas for dealing with some of the practical problems we have (like trying to bath a nearly 10kg baby who can’t sit). You don’t judge. You don’t intrude. You just let me be me and offer oodles of encouragement.

I can’t imagine you not coming round any more but can see that day will come. And we will be forever grateful for the help you have given  us: a bit of breathing space, a bit of time to attend to the difficult things that have come to us as a family with Boo’s birth. A bit of time just to be.

We needed and still need help. I am comfortable with saying that now. And I won’t feel ashamed about it any more.  Moreover, I pledge that one day, when things are better, because I know they will be, I promise to help others as we have been helped. Because I am grateful for all that you and others like you make. And because I know what it’s worth, not just to the economy but to families like ours.

Thank you. The words are inadequate, but thank you.

The Boos

Links to other Volunteers’ Week Blogs

If you’ve enjoyed this post and want to find out more about volunteering and the CSV’s Volunteer Champions campaign please see this lovely post by the fabulous Dorky Mum.

If you want to here about Volunteers’ Week from the volunteers’ perspective, please hop over to visit Ruby+Lottie where Kimberley has posted a wonderful piece about what the volunteer gets out of volunteering.

 

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

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

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

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

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

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

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

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

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

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

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

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

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

S is for sleep. No glossing required.

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

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

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

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

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

Good News Friday #7

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

So here’s mine…

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

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

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

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

Help is not a Four-letter Word

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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