Tag Archives: infantile spasms

When Your Crystal Ball Breaks

There are a few phrases that have started to stick in my throat since Boo’s birth. I’ve blogged about one of my pet hates before when I explained why I find it hard to ‘take each day as it comes’. Another that really yanks my chain is one I haven’t heard for a while now, but which is circling round my head endlessly at the moment: ‘Sorry, my crystal ball is broken.’

It’s a phrase that I heard a lot once upon a time, not so long ago. It was in many ways the signature note of the early months of Boo’s life. In my blind fear and panic following his brain bleeds, then the PVL diagnosis, then the likelihood of a cerebral palsy diagnosis and after the onset of infantile spasms, I often used to ask questions after Boo’s future.

‘What does this mean for him?’

‘Will he be able to walk?’

‘Do you think he will be cognitively impaired?’

‘Will he lose skills?’

‘Will he be able to talk to me?’

There were others, too. It’s still a bit too painful to write them all down.

The answer was always a variation on a theme. ‘Harumph’; ‘You got me there;’ ‘Who knows?’; ‘How long is a piece of string?’, or my least favourite, ‘Sorry, my crystal ball is broken.’

I don’t ask those questions any more, although I’d be a liar if I said I didn’t think about them all, and many others besides, every day. You see, I’m a planner. I like to map out possible futures for us all (I did this pre-Boo), so that I can be prepared, think ahead, have a strategy, make the best of things. It’s just not possible to do that with Boo. I realise that now.

But there’s another important difference that has moved my thinking on from the bad old days. Of course, I want Boo’s life to be a long, healthy and happy one. A life of cognitive and physical potential. But I don’t equate happiness with him being able to walk any more, or even being able to sit unsupported. Life is more complicated and beautiful than that.

And I realise now that one of the reasons I so hated hearing that everyone’s crystal ball was broken was not just because no one could give me any guarantees for the future, but because the very fact that I had asked those questions betrayed a certain naivety and even, perhaps, shallowness on my part. No one can predict Boo’s future; no more than they can predict mine. And even if they could, knowing whether or not he attends mainstream school or walk won’t tell us if that future is a satisfying one or not.

It took a long time, and I still live with my old thoughts quite a lot, but I have moved on. It feels good to type that.

But now, the tables have been reversed. Now I am the one being asked to look to the future and I don’t mind telling you that I’m finding it really unsettling. Really, really unsettling.

It has taken me a long time to adjust my sense of time. To reconfigure milestones as inchstones. To think about physical and cognitive goals not as something that should happen in the next 3 months, but hopefully, with the wind behind us, the next three years. I may still have a tendency to micro-manage the day-to-day (and always feel like I’ve not done enough), but the future is something that I have partly let go of. I have goals, hopes and dreams, but my horizon of expectation has shifted. It’s still there, but fuzzier along the edges and more distant.

This has been a herculean effort for me. So I find it very hard, as Boo approaches 2 (actual, not corrected) in April that consultants and others are asking me to plan ahead and make big decisions.

Statementing and schooling come up at many of our appointments now. And different pictures are being painted. Sometimes I hear of special schools, communication devices and a non-verbal future in which we have to wait to see the extent of cognitive disabilities emerge. From others, I hear he’s not disabled enough to go to the specialist schools that are very near us. That there is no concrete evidence of learning difficulties yet. That it’s not clear what would be the best environment for him.

Then there’s a pregnant pause…

‘What do you think, Mum?’ (Why no one can call me by my name is anyone’s guess.) And then: ‘What do you want for, Boo?’

Surely, what I want is irrelevant, I shout in my head. What he needs is what matters and, although I have strong feelings about various things (I know he understands everything we say to him, he does have some words and communicates with them, sounds, and in other, non-verbal ways), I don’t really know what he needs to maximise his potential, or more to the point, what institutions might be able to meet those needs.

It’s the same with Social Services. I am grateful that they are looking to offer us money to help contribute to the astronomical costs of making our house (the house we moved in before I was pregnant so that we could have a second child) accessible for Boo. But I can’t answer their questions. ‘So, do you think Boo will be able to walk up the stairs by the time he’s five?’ ‘Do you think he will be able  to bath and toilet himself by the age of 8?’

I want to scream at them, or failing that to say what I have hated hearing so many times before: ‘Sorry, my crystal ball is broken.’

Don’t get me wrong. I am glad people are consulting us. And some clearly take our assessment of Boo very seriously. That hasn’t always happened. It’s nice that it does.

But let’s face it, I’m no clinician and although I would argue till I’m blue in the face that I know him best (I do!), I am not a healthcare or SEN professional with enough local or sector knowledge to know what out there in home adaptations or schooling is best for him. And let’s be frank about this. Even if I did, not much of this is in my control. Geographical luck and, what it always boils down to, money, will play a big part in all this. We are the parents of a child with additional needs. We just have fewer choices than most.

I feel in the dark. Newly infantilised in only a slightly different way than the way I felt after his birth. It’s difficult to process. And it’s disorienting having made this mental leap to Boo let’s-just-see-how-things-pan-out time, to planning mode.

We have our first TAC (or Team Around the Child Meeting) in March. It has taken 10 months to set up and I hope it will help to clarify some of my thinking about all this, although I am really not sure what to expect of the meeting and would greatly appreciate any advice anyone has on how to get the most out of such meetings.

I know that the statementing process should start in the next few months. It is frightening. I know there are opportunities, but I can’t help but feel that we are walking in the dark. He is so young. So much could change. So much will.

How on earth can I navigate the path ahead when I can’t even see it beneath my feet?

When Did I Become that Person?

Twelve months ago, things were pretty bad. We were still months away from a cerebral palsy diagnosis (although we knew deep down that that was coming) but we were six weeks post-diagnosis for the infantile spasms Boo had developed. Our already fragile world was cracking before our eyes. The aggressive steroid course had worked, thank God, but Boo got horrific insomnia and so neither of us had slept for months. He had also become unrecognisable as the medication turned him into a bloated, moon-faced, cartoon-like version of himself. And my happy, beautiful determined boy had turned into a little monster, fighting the physical and emotional irritability the tablets induced.

As I’ve documented on the blog many times, I nearly lost my mind. I was severely depressed and had terrible panic attacks. Boo couldn’t flinch without my breathing stopping or my heart racing. Was this another seizure? Were they coming back? Would he regress further?

I remember taking Boo to a physio appointment in early February 2013 (the first we’d had since being released from hospital after the seizure treatment) where I broke down in front of our lovely physio. I hadn’t remembered driving to the hospital that morning. I was so tired that I could barely string a sentence together.

The physio stopped the appointment before it had started. Instead of asking me and Boo to show what he was up to as usual, she sat me down and spent the best part of an hour talking through what help I might need to access and who we might turn to for support. She emphasised how much I needed to look after myself, how I wasn’t going to be able to help Boo or his big sister if I allowed myself to collapse. I had to find solutions to make life more bearable. I left the appointment with a different kind of to-do list than I normally have. Instead of exercises, I had people to phone or email. Appointments to make for me. I felt horribly guilty that I had selfishly squandered Boo’s precious appointment. But I knew she was right. I had to find a way through this.

Twelve months on and things are very different. We had a physio appointment this Monday (we see the physio every two weeks). It was a good one. OK, Boo still isn’t doing things that a year ago I nightly pleaded to any god who would listen that he might, like sitting independently or rolling and crawling. But you know, that’s OK. He has made huge progress. And it’s all about the inchstones, not milestones, around here now. We spent a lot of time in the appointment on Monday laughing and joking and focusing on the good. On how far Boo has come.

Just before we left the appointment, the physio asked me a question: ‘I’ve got another Mum whose recently started seeing me with her little one. They don’t have a diagnosis yet, but cerebral palsy has been mentioned and it seems very likely the diagnosis will come with time. She really needs someone to talk to, someone who’s more used to all this and can give practical and emotional support. She’s not in a good place. Can I give her your mobile number?’ Without hesitating I said ‘Yes, of course’.

As I left the hospital, I started to wonder about this person, like I wonder about people who read this blog sometimes and the comments they leave or search term traces that appear on my stats page. I wished I had her number so I could call her now. And then I started to wonder how I had become the person the physio evidently thought I was. After all, only twelve months ago I was the one desperately needing help and struggling to come to terms with things. I was the one the professionals were worried about. Not Boo. And now, they think I’m someone who might be able to help others because I’ve overcome those hurdles. Because I’m in a much better place.

Really? The possibility stopped me in my tracks.

Of course, I’m not a different person. I am still the same thirty-something woman who sobbed her heart out to her son’s physio and pleaded for help. I still worry furiously about Boo. My horizon of expectation has shifted massively, yes, but I still hope deep down that all major cognitive and physical milestones are his for the taking, in his own way. I still think a crystal ball would be handy, so we can plan for whatever is ahead. And I still get afraid about the economic, emotional and physical challenges Boo will face as he grows up and how all of this affects his lovely big sister.

But I rarely feel the soul-rending desperation any more that nearly caused me to have a breakdown a year ago. In fact, I feel a great deal of hope now. I laugh a lot.

I don’t have all the answers, though. I have so much to learn and do learn so much from all the lovely folks I’ve met on Facebook and Twitter and through this blog. And yet I still mess up. I still get floored by things, often without any warning. I’m still me, it seems.

But the more I think about it, I suppose there is one big difference between the me of twelve months ago and the me now. I have to fight a lot for Boo: fight for support and services he is entitled to, fight prejudice and ignorance, policy, procedure and bureaucracy. It is exhausting and a more-than part-time job. But I rarely fight this life any more.

Acceptance is an easy word to trot out and a very hard thing to achieve, in my experience. I’m also not sure it’s the right word for me. I’m just not sure I accept our life, frankly. For one thing, ‘accept’ is a bit too passive a word for my liking. But I have accommodated myself to this life, for sure. It’s mine, for better or worse, and although it’s hard, the rewards are enormous.

So, maybe I have moved on, after all. I hope she phones. I hope I can help.

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Gotta Run

Almost every email or phone call or conversation I have these days begins with an apology. ‘I’m so sorry not to have done this earlier’. Or: ‘So sorry not to have been in touch for ages, things have been unusually busy lately’. In fact, lately I’ve actually started to ditch the ‘unusually’. Because it isn’t unusual for things to be busy for us. It’s the norm.

It’s not just the regular stuff that fills our days. You know: keeping us all fed and watered; getting Sissyboo to school and to after-school activities; doing her reading and homework; getting Boo to nursery; and getting me to and through work. It’s all the appointments (we’re still averaging 3-4 a week, sometimes more). Then there’s the stuff that needs to be done post appointments, letters to read, reports to sign off on, equipment to source and information to pass on to other people involved in Boo’s care. And then there’s the therapies… Each day we try to include 2 physio sessions, standing frame time (30-60 minutes a day, building up to 2 hours) and speech and language work. There’s not much time for anything else. And because I often work in the evenings and because Boo’s sleep leaves a lot to be desired, I consider lucky if I get to watch one 30 minute comedy on DVD before bed. I rarely switch off.

Of course, there’s a lot of fun to be had in many of our daily activities, and I quite like being busy, but sometimes, it feels like a bit of a treadmill that I can’t get off because it’s moving so fast and I’ll be flung off the end if my legs stop moving and really do myself a mischief.

My solution to all this: add something else to the list.

Running.

Barmy? Me? Never!

Actually, I’ve come to the conclusion that running is one of the sanest things I can do.

I started running in the summer 2012, when Boo was a few months old and a few weeks out of hospital. Somehow, I went from being chronically unfit, overweight, sleep deprived, breastfeeding and stressed out to someone who in March 2013 ran a half marathon in 2 hours 11 minutes. It was a minor miracle I crossed the finish line. The onset of Boo’s epilepsy, his medication induced insomnia and repeated hospitalisations and my development of severe depression and panic attacks screwed up my training as well as my mind, but somehow I did it.

My legs and lungs didn’t carry me to the finish line, though. I know that. It was my head. My determination not to give up and to earn every penny in sponsorship I could to start giving something back to Bliss who had done so much to help us following Boo’s premature birth was what got me through it. And it was a great feeling. You can read about my half marathon experience here.

But then I got a bad leg injury. And then I went back to work, which is good for the ever-strained family money box but terrible for my health, I have discovered. Once again, I am sleep deprived, a bit depressed, overweight etc. etc. Why? Because we have too much to do. Because life if hard sometimes and always hectic. Because I don’t get enough sleep. Because I don’t always eat well.

My solution? To enter another half marathon in my home town.

It’s not until September, but I will need every week between now and then to regain my fitness, especially as the last half I did was on a flat course and I live in a very hilly part of the country. But I need and want to do this.

If you met me you wouldn’t think I’m a runner. I sure as heck don’t look like one. But running has become a strangely important part of my life, post-Boo, not just as a thing I do, but a sort of mindset I inhabit.

I need some me-time badly, but find it hard to grasp. And this is a way of me getting guilt-free me-time, where I am doing something for me that I can feel OK about because it’s also for others (and where I can’t check emails or make lists or do some tidying at the same time). Because my running body is something I can use to give something back. Last year was just a start. I want to raise lots of money for some of the many organisations who have helped us since Boo’s birth. Lots and lots of it. My ultimate goal is to be able to do a full marathon in 2015 or 2016, although even I don’t quite believe I can do that yet.

And as much as I want to show how much I appreciate these organisations, I also want to show through my running how much I appreciate my kids. Life is not easy for either of the Boos, no matter how much I try to make it so. They both struggle, in different ways, with the bombshell that was Boo’s prematurity and the cerebral palsy that resulted. And yet we expect them to carry on, one step in front of the other towards the future. Everyday, I push Boo in physio or other therapies, distracting him when he’s tired or bored so we can eek out a few more minutes of practice that might make all the difference one day. He never gives up. Neither does his sister give up for herself or for her little brother. I have two wonderfully happy and determined children. If I had only an ounce of their guts, I could eat 26 odd miles for breakfast.

I must admit that training hasn’t got off to the best start. Boo was very ill from January 1st and I didn’t start running until the 10th. Since then, I have only managed five 2.5-3 mile (most 3 mile) runs. But it’s a start. And I already feel better for it. For 30 minutes to myself where I can think about what I want to rather than working my way down a to-do list. 30 minutes where I can push myself to reach my goals, rather than trying to push Boo gently towards achieving his potential. 30 minutes where I can show my kids that Mummy tries to be as determined as they are.

30 minutes where, despite the fury of my racing heart and aching limbs, I can actually relax and get off the treadmill.

 

motmonday

Happy and Good News Year (Good News Friday #38-39)

imageThis is the longest I’ve gone without blogging since I started Premmeditations back in April. And to be honest, it’s felt odd. Not exactly like losing a limb, but like losing touch with a good friend through the accidents of life.

Time to reconnect. And what better way to do this by picking up where I left off? With Good News Friday. OK it’s not Friday but that’s how we roll in Boo Land. If there’s one thing I’ve learned since having Boo, it’s that time isn’t linear or necessarily moving in one direction, despite what the calendar and physics say.

So the good news since my last Good News Year post is this:

We made it!

If you follow the blog or read my sometimes anxious ramblings on Twitter, you’ll know that December was a cruel month. By Christmas I felt utterly broken. It’s hard to say exactly what did it. Months of juggling appointments, therapies and work played a part. Lack of sleep, still a major problem here, was surely another. Fear about new pressures at work from January were lurking in the back of my mind. But I think it was whatever this particular brand of PTSD, reactive depression or anxiety (take your pick) I have that was the indigestible icing on the unpalatable cake. I just couldn’t shake the irrational fear that Boo’s infantile spasms would mark their one-year anniversary by returning on Christmas Eve. I found it hard to believe Christmas wouldn’t involve repeated hospitalisations again and be spoiled completely. Last year started so badly and things didn’t improve for many months. I was frightened that I couldn’t cope if this happened again. I was running on empty.

So I did something I rarely do. I gave in to the holidays. I took nearly two weeks off with minimal work. And as the days went by I stopped crossing my fingers and holding my breath.

Because we made it. No seizures. No hospitalisations.

No Christmas in Boo Land is normal by most people’s standards. No life that involves daily physio, speech therapy, gaiters and standing frames could be that, but it was ours and we loved it. Most of all the kids loved it.

There has been a slight sting in the tail. Boo is unwell (has been for 5 days) with a virus and high fever and his already bad sleep is bordering on the appalling. But somehow, despite all of this, being together, having quality time together as a family with other family and friends, and (and I suspect this is probably more important than I’d like to admit) cutting myself some slack and letting myself of the hook has been restorative.

In December I was, frankly, a wreck. In January I feel fit to be back on the road again. Sure there are still bits of my life that are precariously held together by duct tape, but I’m hoping they won’t fall off any time soon.

I am apprehensive about the return to normality: the 6 (yes: 6!) appointments Boo has next week and the late nights catching up with missed hours at work. But normal also means getting back to Premmeditations. She’s a new friend, but a good ‘un and I’ve missed her and her lovely readers.

Happy New Year!

Mummy Interrupted

Today I should be finishing up work for Christmas (well, sort of – I have lots of work-related reading to do by the beginning of January, but not too much). I should be excited about getting Sissyboo at 13.30 as she finishes school for the term. I should be looking forward to a Christmas together all four of us, hopefully without the dramas and hospitalisations that ruined the last one. I should be writing Good News Friday. 

Instead, I  am sat here waiting for a consultant to call me back, writing a blog post, crying my eyes out and with a dry mouth and shaking legs. I am having a 4th panic attack in 3 days and I am miserable and scared.

The cause? I don’t quite know for sure. I have been having a hard time all December as we approach the anniversary of the onset of Boo’s infantile spasms. This anniversary is proving at least as tough as his birthday and due date anniversary. In fact, it’s much worse as I remember that the spasms can come back or morph into another form of epilepsy that can undo all the work we’ve done on his cognitive and physical development. That can take me back to the brink of severe depression and acute anxiety that made life so difficult between January and May. I am always in a state of alert. Now, I’m in a state of hyper-vigilant panic. 

The fear is crippling. I can’t talk or think about anything else. I am a wreck. I had started to feel better a week or so ago and thought I was coming out the other side of this mental health blip. But then two nights ago Boo started uncontrollably screaming and writhing while we were trying to get him to fall asleep. 

Bedtimes are never happy occasions in this house. Boo has fought sleep and his contorted body that he can’t move as he’d like to since birth. But this is different. He is writhing and screaming for a good hour or so as we hold and comfort him. We can distract him by giving up or showing him a toy but the minute we try to settle him again, his legs start coming up abruptly into a frog-like position and back straight again and the high-pitched screaming returns. I don’t know if the legs are caused by the crying/distress or vice versa.

I live in fear the spasms have returned.

I should say that what Boo is doing at bedtime looks nothing like the spasms he experienced almost exactly a year ago. He had those only on waking. They were a rhythmic jerking movement from stomach to head. What I am talking about now only happens when he is falling asleep (although that is a common time for IS to occur) and he is pulling up him legs to his tummy (not a particularly common seizure presentation as I understand it). There is no stomach movement, no eye movement, no regular rhythm. He is not returning to normal between movements. He is just plain angry and incessantly moving. Am I being paranoid?

I think I am. He may just be teething. He has had two teeth coming through for weeks (you can feel the point of one under the gum.) He and teething get on about as well as he and sleep. No teething experience he’s had so far has been pleasant for any of us.

Then there’s the fact that I am in a state of high stress (not helped by the OT breaking Boo’s long-awaited Bee seat yesterday when she came to do a review – and the Jenx factory is now closed for weeks for Christmas, or the fact I feel I am very behind with my work and so many other things). I realise that I am probably making the ‘evidence’ fit the scenario my disordered mind has conjured.

I keep saying to myself that it is no more likely his seizures will return this Christmas as next March or never. It’s just a date. But I can’t shed the fear. Even though my instinct is that this is nothing serious. (That was not my instinct with the spasms – I knew what they were even when no one around me would believe me until they saw the EEG results.) 

Perhaps the consultant will call me back. Perhaps he will put my mind at rest. I have never wanted to be perceived as a bothersome, paranoid parent more in my life.

I want things to get back to normal. Our normal is not most people’s, though I know it is so much better than many others’, but it is ours and we can deal with it. 

And I so want everything to be OK. Two nights ago, Sissyboo was crying when she remembered that Mummy and Boo spent most of last Christmas in hospital. She begged us to promise it wouldn’t happen this year. We said we were as sure as we could be that it wouldn’t happen again. But we can’t promise anything, can we?

Please let this be a blip. Please let the seizures stay at bay. Please let this Christmas be a healthy and hospital-free one. We would all gladly send all our presents back if we knew this could be true.

 

The Therapist’s Approach to Christmas

OK, so call me Mrs Scrooge, but here’s my confession: I’m not really looking forward to Christmas this year.

Before you pelt me with metaphorical baubles, let me explain. I’m not such a Grinch that I can’t get excited about it a little bit. Alright, a Tesco ad is never going to make me cry and Yuletide shop windows in October leave me cold. But I do love it for the kids’ sake. Sissyboo’s excitement is a wee bit infectious and some of it has rubbed off on me. And now that her birthday has been and gone I feel like I can and have to get organised.

But I also don’t want to. You see a big part of me, the part of me that crosses my fingers before certain medical appointments or opening certain letters addressed ‘To the Parents of Mr Boo’, the irrational me, doesn’t want the advent calendar door on the 24th to open.

I’ve had some less that perfect Christmases in the past 30 odd years but last year’s was a humdinger. Last year was also the first that I’ve ever let myself get really excited about.  It had been a tough old year, to put it mildly, but after 8 1/2 months we were all together and doing well. Boo was progressing, albeit slowly, and he was home and with us. Sissyboo had settled in at school and was doing so well with all the challenges our new life had brought her. We were spending Christmas with my folks. It would be no work. No hassle. All hands on deck and more food and drink than was decent.

And then Boo started to have seizures.

I won’t recount the details of us discovering that he had infantile spasms – a catastrophic form of epilepsy caused by the brain damage that is the root of his at the time not diagnosed cerebral palsy. The whole sorry saga is well documented here.

He had several episodes as we called them at the time on Christmas Day (not obviously seizures, but I suspected that they were nonetheless) and all I remember about Christmas Day was a crippling anxiety, a dry mouth, worry that I would ruin everyone’s Christmas if I took him to A and E and terrified to death for the consequences if I didn’t. I took him in on Boxing Day and what followed involved three hospitals, three hospital stays and some of the worst months of our lives.

Boo has been seizure free for 10 months now. He was diagnosed quickly and responded well to treatment. We were and are lucky. Very, very lucky. But the spasms could come back or morph into another form of epilepsy at any point. Fear that this will happen – that he will start seizing again and lose the skills we have worked so hard to develop – resurface often in my mind, but I try to focus on the good, how long it’s been since his last seizure, how well he’s doing. Usually I don’t let it get me down.

But in the long hangover from last Christmas I am struggling to think about this one. I know it’s daft. There is no more reason to think that Boo will start seizing again on December 25th this year than tomorrow or never. It’s just a date.

Anniversaries are hard in Premmieland, though, as I’ve documented on the blog before. Even though they give plenty of opportunity for celebration – of how far we’ve come – they simultaneously clobber you round the back of the head and don’t just remind you but make you feel, smell, hear and taste things you don’t want to recollect.

I know it’s silly but I’m frightened. Frightened of allowing myself to get too excited for this Christmas (the happy, family one we should have had last time round) and setting us up for a fall. I’m frightened that something else will come to knock the wind out of our sails. I’m frightened I won’t be able to cope if it does. I’m frightened of memories making me sad on a day when I should be happy for my kids’ sake. And I owe it to them to be strong. They deserve a fabulous Christmas. Sissyboo most of all. I am determined she will have one.

So this year I am not dreaming of a white Christmas or perfect parties or anything resembling a Tesco ad. No: I’m approaching Christmas as I have learned to approach life since Boo.

Call it the therapist’s approach to Christmas, if you like. My plan is to keep plugging away at the day-to-day by doing what needs to be done to give us the best chance of things working out but safe in the knowledge that things will either go to plan or not. I only have a limited control over these things no matter how hard I try. I know that now. And yet whatever happens, experience tells me that it will probably be OK. And if the determined, crazy little Boos stay true to form, it could just be marvellous after all.

Vulnerability Comes in All Shapes and Sizes: Supporting Home-Start’s Snowflake Appeal

snowflakes

If you have read this blog before, you might know that my family has benefited greatly from the help and support of Home-start, a service which, for forty years, has been providing volunteers to spend a few hours of the week in the home of a family with young children to help ease them through difficult times.

I was first introduced to Home-start by a Health Visitor last January. I was a mess. Just when I was coming to terms with the likelihood that Boo had cerebral palsy and would likely struggle to attain most of his motor milestones, we were hit by the bombshell of infantile spasms. By early January, the seizures had stopped, but the anxiety (of worrying every time that he went off to sleep that he would wake to seize, that he would regress and lose those few  milestones he had met, that life would never be OK ever again) was excruciating. It was made worse by the steroids that stopped the seizures. My lovely, good-tempered boy turned into a hyper-agitated, screaming machine, with an insatiable appetite and acute insomnia. If I could 3 hours sleep in a day (never in one chunk, mind you) for the next 3 months, I considered myself lucky. We could barely leave the house because of Boo’s vulnerability to infection. I lost lots of weight. I looked grey. I would cry if someone made eye contact with me.

I was severely depressed and had acute anxiety and panic attacks. I was advised to phone a local NHS mental health charity for counselling. The kind lady I spoke to said that the waiting list for treatment was about 6 months. She sounded more distressed on my behalf than I was, but thought my needs were too acute to be met by their service. I was too ill for them to be able to help me, I realised with a sadness so deep that I could barely speak. I managed to summon enough voice to say that I understood, got off the phone and cried for two hours straight. How could I help my kids when I was such a wreck?

My GP phoned our health visitor in disbelief that we had never been assigned one (we had but she was on long-term sick leave since Boo had come home from hospital). We were told there was a three month wait to see one regularly, but someone who was about to change jobs had one slot in the next month and could come and see me for a one-off visit.

She did and we filled out a CAF form, which is woefully out of date now and has never been used for anything. But the one good thing that did come out of the meeting was a referral to Home-start. I had never heard of them. They have done more to help us as a family than anyone has done in the past 19 months.

Since April, our wonderful volunteer has come round for 3 hours a week to give me respite and support. She has enabled me to catch up on medical paperwork; to do laundry; she has come with me to difficult appointments (including a very nerve-wracking EEG). She has given me friendship and head space. She has helped to give me back what I have retrieved of my sanity.

She has helped Boo, by playing with him at times when through the exhaustion and anxiety all I could do was cry when I looked at him. And yes, I am ashamed to type that sentence. More recently, she has looked after Boo so that I can spend a couple of hours one night a week with Sissyboo. Because, like her brother, like me, she too is vulnerable.

She adores Boo in a way I had never imagined would be possible. She is full of fun and laughs. But she wakes up at night sometimes crying because she is worried her little brother will never play football or because silly Mummy has said she has to take him to a routine appointment tomorrow and she is worried it will be one of those appointment when Mummy and her brother go into hospital and won’t be let out for a week or so. Having the luxury of just two hours a week alone with my daughter has made such a difference. I felt that I have got Sissyboo back. It is a little glimpse of normal that is all too rare in our lives.

Our time with Home-start will sadly have to come to an end soon, as my flexible working arrangement becomes slightly less flexible from January. And I feel both nervous and extremely sad about this. But I also feel incredibly grateful.

Home-start has helped all three of us immeasurably. They reached out to us at a time when no one else did. They advised me to apply for DLA for Boo. They put me in touch of a carers support service that vetted our application. They put me in touch with local SEN groups. They have helped ease my transition back to work. I could go on, but to quantify their help is frankly impossible.

Let me put it this way: I am not the same person I was in January. Neither is Boo, nor is his sister. And Home-start has played a large part in helping us on our way on this journey.

Vulnerability comes in all shapes and sizes. I never thought I would live in a vulnerable family. We are a dual income household with our own house, good friends and a supportive, if sadly very distant, group of relatives. But we are vulnerable. Others face different and sometimes much more acute challenges than we do. Home-start recognises that all families and children are unique and that many are sorely tested. They don’t discriminate against certain types of problem; nor do they privilege one above another.

That is why they have started their fabulous Snowflake Appeal for vulnerable children, each as different, beautiful and fragile as the next. If you read the magazine Good Housekeeping, you may have already read about this important appeal to help raise fund to support the invaluable work Home-start does in its interview with one of its supporters, Kirstie Allsop. If not, please visit Home-start’s website and see how you and your children might be able to help those affected by physical or mental health problems, financial hardship, bereavement or addiction.

Financially, times are hard, and never more so than in the run up to Christmas. But if you can afford to make a one-off donation to Home-start, or even a small monthly direct debit, then I would urge you to consider it. Or perhaps you just have £1 to spare for a snowflake pin badge.

If nothing else, please make just a few minutes to find out about the good work that Home-start does. Home-start is a relatively small charity but it has made an enormous impact on the lives of the one million children and families it has helped since it was set up forty years ago. Please help us to ensure that it can continue to do so. Thank you.

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

Diagnoses and Other Dilemmas

There is a day I have been anticipating and dreading in pretty much equal measure for months now. It’s known to parents like us as D-day: the day your child’s diagnosis lands on your (in this case inappropriately named) welcome mat or is delivered by a consultant in a hospital.

Boo’s diagnostic tests (MRI, lumbar puncture, full bloods for genetic tests and urine for metabolic disorders) were performed three months ago. But in many ways, we have been waiting for D-Day for 18 months. From the fourth day of Boo’s life. The day after he contracted meningitis, the day we were told he had sustained a significant bilateral brain bleed.

When a CT scan at 8 weeks (three before he was supposed to have been born) confirmed that Boo had PVL (softening of white matter in the brain around the ventricles that had dilated following the bleed) and that cystic changes had ensued, we knew the odds were that this day would come. And then we noticed Boo’s increased but variable (i.e. it comes and goes), assymmetric tone (worse in his arms than his legs, worse on his right side than his left). We started racing towards it at break-neck speed.

But then again, he had great eye contact, he smiled and laughed. He was gorgeous and healthy. Maybe it would all be OK. Maybe cerebral palsy wasn’t our unavoidable destination. And then at 6.5 months corrected age Boo developed infantile spasms, a catastrophic form of epilepsy, and if there was any hope that he was going to be one of the babies who gets away with prematurity and brain bleeds it was cruelly snatched from us.

From then on I have to confess that I wanted the diagnosis to be confirmed. I felt we needed it. Not having a diagnosis felt like a punishment. Because every time people asked how Boo was or why he wasn’t sitting I had to say, ‘Well he has brain damage and he might have cerebral palsy’. ‘I’m sure not’, people would say, ‘Don’t believe the worst till you have to’, they would mutter to my great irritation (as if I were wishing my son to be disabled).

Even more than me, I felt, The Grumposaur needed a diagnosis, to help him accept what had been painfully clear to me for months of therapies and hospitals. Boo wasn’t going to catch up. Boo might hit milestones but nothing would come naturally to him. Call it Holland or what you will, this place we were inhabiting was our new home whether we liked it or not.

I resented the spasms. Not just because they were bloody terrifying and aggressively parasitic. No: I resented them because they prevented us getting a diagnosis. Most people involved in Boo’s care treated him as if he had quadriplegic CP caused by his brain damage. That explained the mixed tone, the developmental delay. But the spasms (though most likely caused by the same brain damage) could theoretically have had other causes – awful and potentially life-threatening genetic or metabolic causes – that can have a similar presentation to CP. So no diagnosis until these other things could be ruled out.

We had those tests in late June, on the first day of Wimbledon. And the wait for the letter to end up on our mat has been excruciating at times. So when nearly three months had passed I called to find out when we might expect the results. It turned out most had been sent to our hospital some six weeks earlier but no one had thought fit to tell us or even put them in the post. I won’t rehearse this sorry saga again here as I blogged about it last week. And more has happened since.

Here’s all you need to know. The MRI essentially confirmed what we knew already. Boo was born 11 weeks early and had a grade 3 bleed on one side of his brain and a grade 2 on the other resulting in PVL and cysts. The lumbar puncture showed no problems. His urine needs to he done again as they didn’t test it quickly enough, but the chances of the particular nasty they’re testing for being applicable to Boo is miniscule. All genetic tests tests for known syndromes came back normal.

But…There’s always an effing ‘but’, isn’t there?

But…they found a small amount of extra genetic material on the long arm of chromosome 22.

What does that mean, I hear you say? ‘What does that mean?’ I asked one of Boo’s consultants. The answer, according to the report which I still haven’t seen, but which has been read to me on the phone, is ‘not known’.

Not known.

There are a number of syndromes connected to this chromosome, but Boo didn’t test positive for any of those (most of which pertain to duplication or deletion of the chromosome not to additional material being present). It is possible that The Grumposaur or I have this same slight genetic imbalance. They have offered us genetic testing to see if that’s the case. More meetings, more waiting. The  pay-off would be that if we are found to have the same imbalance and since we are, to all intents and purposes, healthy at present then it is probably insignificant. A red herring. If we don’t have the same small amount of genetic material on the offending chromosome then we are back at square one, not knowing if it’s significant and no way of treating it if it is.

Thoughts ricocheted round and round my head as the consultant spoke to me. So what do we do, I thought? Do we get tested in order to hope we prove to have the same abnormality and then declare it unimportant? Or do we ignore it, safe in the knowledge that even if it is significant, knowing that wouldn’t make it any difference to Boo’s treatment? Do we go down a potentially long road of testing in the hopes that geneticists’ understanding catches up with their analytical abilities? Would any of Boo’s team of healthcare professionals think badly of us if we don’t get ourselves tested? Is it irresponsible not to do so?

If Boo hadn’t had infantile spasms, we have been told, it is unlikely they would have offered this raft of tests. His presentation and birth and early days history points as clearly as possible to cerebral palsy and for the brain damage causing the seizures, which, mercifully, he has been free from for over 8 months. As I understand it, the known genetic and metabolic disorders that can cause the spasms have now been ruled out.

All these questions, and more, crowded my mind but in the end, and somewhat to my surprise, the one I most wanted the answer to was this: ‘If we don’t get tested, will this prevent you giving him a formal cerebral palsy diagnosis?’

The answer: ‘No. I think when you formally get the results from Dr X in a few weeks [oh yes, we have to wait another month!] I think you will be given the quadriplegic cerebral palsy diagnosis. That is Boo’s presentation. That is what we are treating through therapy.’

I asked for time to think about things. Time to decide whether to go down the genetics route. Time to consult with The Grumposaur. I clearly need this diagnosis more than I thought I did (and let me say now how lucky I know we are that we will get one as so many parents don’t as my many SWAN friends in life and online know only too well). But even so, I maintain The Grumposaur needs this even more than me. He has the casting vote.

But as for me? I’m done. I don’t want to go down that path unless The Grumposaur wants to.

Because I am sick of brick walls, dead-ends and tail-chasing. I am exhausted by waiting and fretting.

Most of all I am fed up to my back teeth with focusing on Boo’s ‘problems’, on what he can’t do (yet). I am done I tell you. DONE!

I want to move on. I want to tell the world that my son has cerebral palsy. That he nearly died and survived only with terrific brain damage. And that he is bloody marvel. That he can do so much. That we are helping him to do more. That he is not his ‘condition’ or whatever euphemism you want to use. He is a little boy. A funny and beautiful little boy who has a life of great, if perhaps not conventional, potential.

It’s time to focus on the good, not the bad. Of course, this isn’t going to be easy, and the anxieties and frustrations aren’t going to end just because I want them to. But I want to move beyond unfeeling clinical terminology and to the richness of the life that stands before us.

I thought I wanted a diagnosis. It seems we have one, and for that, as I said before (knowing how things could be very different) I am glad.

Actually, though, what I now know I really wanted was the opportunity to live beyond diagnosis. An opportunity to live our lives. To move on.

And to my great surprise, I find that I have. Already.

My name is Mrboosmum. My son has quadriplegic cerebral palsy and epilepsy (under control currently with medication). Oh and in case you didn’t know, his strength, determination and wicked sense of humour make him just about the most amazing person you will ever meet.

Depression, black dogs and other animals

Before I went away in holiday I wrote a post about how I was going to take a bit of a blogging break. My plans to get posts written in advance and scheduled failed due to lack of time and too many commitments and I hadn’t planned to invite guest posts. But I was going to write a weekly Good News Friday update, keep up with my Play Agenda posts. I promised you. I promised myself.

None of that happened. None, I tell you!

Instead of the class hamster, the blog turned into an itch I couldn’t stop scratching. I clearly need it much more than I am able to admit to myself and I used it to work through some of the things that happened while we were away: the stares, the tensions in Boo Land. The tensions got a bit much, though, and when I sat down to write the first Good News Friday I just cried. So I abandoned that (and the next post) when the fabulous Orli from Just Breathe offered a guest post that put my holiday blues into perspective and gave me a good laugh.

It would all be alright when I got home, I thought. I’d get my equilibrium back and my blogging mojo. I would write up two weeks’ worth of Good News Friday, get up to date, get posts done for linkys and sort my life out.

Have you realised yet that my favourite hobby is setting myself unrealistic goals?

Instead, I hit a metaphorical brick wall. The day before we left Devon I felt as if oxygen was leaving the room. The air felt heavy as heavy as my heart. I didn’t want to stay on holiday forever. I missed lots of things about being at home. But I didn’t miss lots of things about my life. The ongoing battle to get the top of the Social Services and Health OT lists to get seating for Boo and hope he doesn’t develop scoliosis. The anxious wait for his diagnosis (two months and counting since the tests). The endless therapies. The juggling…The exhaustion…

Depression and his old pal anxiety, They taunted me with their predictability. Laughed in my face as they watched me inwardly crumble. I barely remember the journey home and I spent most of the weekend feeling like I was suffocating. I couldn’t write. I couldn’t think.

Winston Churchill famously referred to the bouts of depression he lived with as a black dog. I get the metaphor (the darkness, the constant perching at your heels), but it doesn’t feel right for me. I guess it’s partly because I like dogs so much, black white or any colour you fancy. I find their companionship consolatory.

Maybe I’ve just spent too much time in Devonshire pubs, but I think of my depression more as the Exmoor Beast. Dark and predatory.

What depression looks like

Or maybe, more like the hound of the Baskervilles. You know. You’re walking home one night in the countryside minding your own business and then find yourself walking through the Grimpen Mire when a ferocious dark beast with a green tinge comes out of nowhere and tries to eat you. No: that’s not right either. Sherlock Holmes can’t rescue me. And the hound is only part real, part phantom (a dog someone has starved and painted to look like a spectre).

My depression is not a phantom. It’s very real. And while it feels slightly odd to say so, it’s not man-made. To my mind, it’s a perfectly natural response to 18 months of stress, of prematurity, meningitis, of wondering if your baby is going to die, of repeated hospitalisations, of epilepsy, of brain damage and cerebral palsy, of fighting your child’s corner, of struggling to get the right care, of only 15 nights of unbroken 6 hours sleep in 18 months. Yes: I am counting.

Actually, I’m not sure I have the right metaphor for my depression. I’m not even wholly sure what my particular mental health issues are (depression – yes – but PTSD has been mooted several times and I check most of the boxes, and anxiety is certainly a huge part of it). More to the point, though, I don’t know if I need a metaphor. I understand my depression and part of me really doesn’t want to anthropomorphize it. It really isn’t like an animal or a beast. It’s more like an element: a hurricane, a tidal wave or stormy sky.

And like the weather, things change and clear just when you think they never will. I don’t know how I got through this weekend. I don’t remember unpacking or doing five loads of laundry or doing Boo’s physio, although I know all of these things happened. And then it was Monday and I started working on my massive to do lists and all of a sudden, I felt OK again. I wasn’t paralysed any more. I started to get on with things. I felt better.

I don’t know what changed. I don’t think it was anything I did or any of the pep talks I gave myself, I just felt better. And now I am writing this post and getting on with the work I need to do and inching closer to seating solutions for Boo and getting on with our life.

And although life is hard I can see its beauty. Even when the clouds are dark as anything, I can still see that.