Tag Archives: depression

To do…

Well, another school holidays are over and another all-too-short a break has been had. And I am more exhausted than ever.

I don’t know about you, but it’s only when I stop – if only briefly – that I ever have time to think about my life. And the outcome is almost always the same. I vow to change things. My life is complicated. I find it difficult, but I can’t change it, so I will do better. I’ll be more organised. I’ll fit in more ‘me time’. I’ll change the world while I’m at it, too … Of course, I never achieve any of these things.

This holiday has hit me harder than usual. I’m not entirely sure why. A combination of things most likely. I had to work a chunk of the Easter holidays and The Grumposaur was away with work for 10 days. Extra pairs of hands come in handy round here, and were missed, especially at the moment. You see, I have a really bad back. Carer’s back, the doctor called it. The bottom right side of my spine (around which is a huge muscle knot that won’t shift) is in agony without generous doses of co-codamol and ibuprofen. I have been assigned a lovely physio, who called my range of movement (which I thought good, ‘pretty appalling’) and who has given me exercises to do. Not lifting Boo – ‘the best piece of advice I could give you but I know you can’t take’, the physio said – is not an option.

Then there’s the fact that it’s been Easter. Easter’s hard for us. And the fact that this tricksy holiday moves around makes it harder still. The year Boo was born, it followed just days after his untimely arrival. On Easter Sunday 2012, we thought he would die of the infection that caused his brain injury. I will never forgive you for that, Easter, no matter how much chocolate arrives in the post. (I was never that fond of chocolate anyway). And this year I am crosser than ever that Easter made me wait three weeks after Boo’s birthday (a lovely but difficult day) until it came along to make me feel again the overwhelming fear I felt two years ago. Enough already.

And then there’s the fact that I have been forgetting things. This is really, really, really bothering me at the moment. Ever such a lot. I have forgotten to pay the Grumposaur’s credit card bill on time for two months in a row. It’s not that we didn’t have the money to pay it in full. We did. I just forgot and have the lovely overdue fees to pay for my stupidity.

I never used to forget things like this. I have – I mean, had – one of those brains where dates, numbers, birthdays etc. were all stored away and, as if I had Google Calendar in my head, I would get mental alerts about 3 days before I had to buy a card or pay a bill and that was that. Yes, I was that annoying. I used to annoy myself.

Not now, though. Now, I have a paper diary and a calendar and write myself a note once a week to update it, because otherwise I would forget to. I write myself post-its and send myself iPhone alerts to remind me to do the most mundane things. The day I have to send myself an alert at 6:45 to brush my teeth is not far away.

I haven’t forgotten everything, but it’s like the hard drive has been saturated with Boo files and there’s no more storage space and no disk drive to conjure additional memory. I can remember the dates of most of Boo’s many appointments for the next 3 months. Ask me when and where his 2-year review is in June and I can tell you. Ask me to tell you the number of paediatric physio (even though I have only ever rung it twice) and I can recite it backwards. But I forgot my best friend’s youngest daughter’s birthday in February. And I can’t remember what I have to prepare for the meeting I have at work tomorrow. Really, I can’t.

Frankly, this all makes me feel terrible. It makes me feel like a failure. A complete and utter failure. I don’t feel I can rely on myself any more. I feel as if my life is a mess.

I write to-do lists to help. They don’t. I wrote one out last night (after doing all the school admin I had left until the very last minute) and cried. I actually cried. Because none of it looks manageable to me at all. I have a long work list, with a couple of stressful and big projects that have to be completed imminently.

In order to do them, I need to declutter my brain a bit. But how? After all, there’s the Boo list. Gosh this is long. There are equipment and referrals I need to chase, and money that needs to be saved, info and long-overdue updates I need, not to mention the big long list of people to contact following Boo’s TAC meeting as we start researching schooling. And then I remember the therapy goals we have been set and remember that I haven’t done crawling with Boo for days, despite doing physio with him daily, and haven’t practised blowing for weeks. And Sissyboo has stuff going on, too, especially with a big dance show she’s doing in two weeks. On that to do list is a make-up purchase list (I know, it makes me feel sick too) so she can be seen under the theatre lights. She will have more make up than I have ever owned by the end of our shopping trip.

And there’s the house, of course. Paying those bills I can’t remember to pay any more, sorting out contents insurance and persuading people to put Boo’s adapted buggy on it, when wheelchair services finally tell me how much it’s worth. Just keeping on top of the tidying and cleaning (I so need a cleaner, please let me get a cleaner one day) not to mention the laundry post the Grumposaur’s case of Easter food poisoning feels like it’s beyond me.

The holidays are over and I want a break. From my life. That sounds awful, doesn’t it? But it’s true. It probably won’t be true tomorrow. If I’ve learned one thing since having Boo is that life and your attitudes to it can change rapidly, and just when you’re about to give up on something, things often turn around. And if my back gets better and I can run again, just to get that hour or so sanity saving break I need each week then I’m sure I’ll feel a whole lot happier.

But just in case things don’t change, maybe I’ll put ‘Take a break’ on my to do list. You never know. One day I might be able to tick it off that pesky list.

 

 

 

 

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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.

a4641-smallsteps

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.

 

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.

 

Carers Week 2013

This week is Carers Week. In addition to raising awareness of the vital role that the staggering 6.5 million carers play in families and communities, this week encourages individuals to self-identify as carers in order that they can receive the practical and emotional support they might need to guide them through what is one of the most important, undervalued and demanding jobs (and yes it is work: hard work) we can do.

Since the birth of Mr Boo at 29 weeks last April I have been a carer. It still doesn’t feel right writing that. Caring is, after all something that we parents do. It’s on the list of necessary qualifications for the post of mother or father. Although as an aside, I think caring is still too often perceived as a gendered – i.e. feminine – trait, which is a disservice both to the women so often culturally expected to take on these roles whether they wish to or not and to the many men who are carers (as my grandfather was until my grandmother’s death) and for whom support seems so irrationally thin on the ground.

Of course I care for my disabled son, just as I care for his fighting fit older sister. But does that make me a carer? Back in January I was advised by a local Surestart Centre where I’d been attending a special needs baby group that I was and that I should register as such with my GP. I picked up the forms but couldn’t bring myself to fill them in. I left them out on the kitchen unit secretly hoping my partner would see them and an encourage me to complete them. Instead he said, ‘So that’s what we are now, is it? Carers. I thought we were parents.’

I totally understood and shared his suspicion of the label. Our son was under 1 at the time. Of course we had to do everything for him. Surely ‘carer’ was a more suitable label for others facing difficult, life-changing situations when typical family life is interrupted by accident, illness or injury, just as it did for my Mum when my grandmother was consumed by that most cruel of mental illnesses, dementia. Dementia eventually killed my Nan, just as I’m sure the strain of caring for her killed my beloved grandfather six months to the day before she died. The casualty list is even longer. Five years after my grandmother’s death, my mother is only just recovering physically and emotionally for this terrible period in her life.

By contrast, we were and are so very lucky. Boo’s challenges have been apparent from birth. They haven’t side-swiped us in quite the same way, although I still feel winded most of the time. For the moment, at least, and unlike so many other carers in the UK, we are able to spread the responsibility of our son’s care. My partner works; I recently (and with mixed emotions) returned to work. The two jobs enable us to pay for nursery for Boo for some of the week where others help us look after him. We are fortunate enough not to have to rely on carers’ allowance, although we know that might change.

The carer forms lay languishing for some time while I pondered what to do with them.  And then my own mental and physical health began to deteriorate quite rapidly. In addition to the depression and anxiety occasioned by dealing with Boo’s medical problems, I was suffering from constant, severe headaches and extreme exhaustion caused by Boo’s acute insomnia and the relentlessness of daily therapies and multiple medical appointments every week (sometimes every day). My back was, and still is, suffering from the strain of lugging around a 10kg+ baby who doesn’t bear his own weight voluntarily or consistently. It’s getting worse with every week that goes by. Bathing him has turned into an Olympic sport.

Who was I kidding? We were and we are carers. And the point of self-identifying as such, I belatedly realised, was that we are mentally and physically vulnerable as a consequence. We needed to be red flagged. Because when carers aren’t looked after, the consequences can be devastating.

Carers may need economic or legal advice, or even just the anecdotal wisdom of someone who has been there and done that. A person, for example, who can suggest you might try to bath your baby by putting an inflatable high chair insert into a laundry basket in the tub to help your groaning spine. Carers may need emotional support to overcome the crippling isolation that living so selflessly and intensely can make them feel. Other carers badly need respite, to recharge their metaphorical batteries, to rekindle all those relationships (with their partners, their other children, their friends) that of necessity get neglected in the hectic lives they lead, to remind themselves that they are individuals who are not solely defined by their relations to others.

Carers, in short, need caring for. More than that, carers deserve to be cared for by the communities they serve through their voluntary and often invisible labour. This may seem obvious, but sadly it’s not obvious enough that this doesn’t need saying now. Repeatedly. And very, very loudly!

As I can’t say enough, I am lucky. I am currently able to work. And exhausting though combining my domestic and professional responsibilities can be, work offers me collegiality, respite, a break. My paid work can involve long and antisocial hours and many would describe it as stressful. Let me tell you: it is a complete doddle compared to the work of carer. Because caring is work that really matters, that makes a big difference to individuals and to society as a whole. The stakes are unimaginably high and the rewards, though many and various, sometimes cannot completely compensate for the price paid by those who do the caring.

So this week, please do spare some time to think about the role that carers play in our society. In my experience of meeting many parents of disabled children over the past 12 months, carers warrant our utmost compassion but won’t want our pity. What they deserve in return for their selflessness is a commitment from us all to find practical and sustainable solutions to funding the support and services they and those they care for require.

It’s time to care for the carers.

 

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.

 

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.