For our eyes only

Mostly, when I write about Hannah (as distinct from Rett Syndrome), I write about her cheeky smile, her wicked giggle, her sparkling eyes and her mischievous personality which captivate most of those who meet her. The regular reader will recognise these phrases and references, the friend will recognise the little girl I describe.

But this is not the full story. Of course it isn’t. How many 7 year olds do you know who are nothing but giggles and smiles and captivation? Come to that, how many any year olds do you know who are constantly happy? It’s an impossibility, naturally. It is probably also pretty ‘normal’ for children (all of us) to save the tantrums and the unhappy for those we love, those with whom we feel safest. Most parents will tell you that their reported child at school or nursery is a different child to those they see at home. How many of us smile convincingly and engage enthusiastically all day in our workplace, but save the complaints and the weariness for our partners? Natural, I presume.

I struggle, though, to rationalise and to see things as ‘natural’ or ‘normal’ when, by 4.30pm most weekday afternoons, the screaming, shouting and sobbing of my cheeky, captivating daughter has reduced me to tears. It is hard not to feel like a failure of a mother when the child who arrived on the school minibus smiling and giggling is now, in your care, inconsolable.

Harder still when her home-school book tells you she has been happy and engaged all day, yet everything you attempt to engage her in is met with hitting, scratching, louder screaming and angrier tears (hers and yours).

Harder still when you have to admit that you’ve been having a good day. Until now. That the daily trials and challenges of two small boys are simplicity compared with this. That the simple joys of being with your two sons and their precious words become exquisitely painful in these deafening, wordless moments.

Harder still when the late summer sun is still shining and you can’t help but feel that  this should be the start of after-school play-dates, picnics in the park, autumnal walks in wellies, but instead it’s really just about survival.

Harder still when, because son number one has just started school, these hours are more precious than ever. You desperately want to give him the attention and time and enthusiasm he needs, but instead you are consumed with damage limitation. A double-whammy on the failure mother front.

Harder still when you also have to admit to yourself that deep down, you feel that the arrival of that minibus is too often the start of the hardest, sometimes saddest, two hours of your day. How can you feel that way about your daughter coming home? ‘Guilt’ doesn’t even come close.

Harder still when sometimes, too often, in these moments of intense and relentless noise, you struggle to distinguish between the syndrome and the child. I am angry, always, with Rett Syndrome, but sometimes the lines blur and I find myself angry with Hannah. With this child in front of me whom I do not seem able to make happy, whilst almost everyone else can. With this precious, first-born, only daughter, whom I have utterly failed to protect. If I was standing in Hannah’s shoes, I’d be shouting at me too.

Harder still when, because you have never had the privileged joy of hearing her say she loves you, or even likes you, you cannot help but start to feel that maybe she doesn’t.

Maybe she doesn’t.

It’s difficult not to wonder, when all of this does truly seem to be saved for us only. The arrival of almost anyone else, with very few (and well-judged) exceptions, and our smiling, cheeky, sparkling girl is back, making us look like we are a) incompetent, and b) liars. Watch the video, you’ll perhaps at least realise that we are not b), she really does do this. Every day.

https://vimeo.com/107648527

Or maybe we are liars, in some respect. Because for the most part, we miss out this detail of our reality. We tell the story of the beautiful, happy, smiling little girl and the devastating syndrome which has stolen her words. We share photos and videos of her smile and her giggle, alongside messages of fundraising and hope, and they are ‘liked’. This is not a video to like. I hate it. I hate that it happened, I hate that it happens every day, I hate that I filmed it, I hate that I’m posting it, I hate that you’ll see it. But because it does happen, every day, I think you should see it.

We all (humans) put on a brave face a lot of the time, we all wear different masks and have stories we don’t tell and fight battles and tears which we keep within our own four walls. I post this glimpse through our window because this is Rett Syndrome. It is more than a beautiful, wordless, cheeky girl, it is also, every day, a beautiful, frustrated, angry little girl screaming at frustrated, angry, helpless parents, desperately trying to tell them what it is like to be her.

I love that Hannah shows you her cheeky side, her naughty smile, her infectious giggle. I’m proud that you have seen the best sides of my little girl and that you speak about her as a happy, engaging child. I’m glad that few have seen her other side (and mildly comforted to know that the few who have are people she does, unquestionably, love!) But sometimes, a small, sad, angry part of me wants you to see the rest too. I know you won’t ‘like’ it, but guess what: I don’t like it either.

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Milestones

I sit across the other side of the room to my husband. We take it in turns to hold out our arms and call her name in high-pitched voices, smiling, trying to entice her to take those few fragile steps in our direction. When she gathers the courage to begin, we speak soft encouraging words, anxious not to distract but keen to coax. When she falters half way, we edge imperceptibly forward, reluctant to interrupt the independence but instinctively protective. When she reaches the other side, we embrace and exclaim, clap and cuddle, tell her she is so clever and we are so proud. We smile at each other, over her head, he laughs gently at my happy tears. Her brothers, who have long since passed the stage of being applauded for such a feat, laugh and exclaim too: ‘look what Hannah did!’ They are proud of their big sister.

  Hannah is seven. We played this scene (minus the little brothers) many years ago, when she was two, faltering yet fearless, walking between her parents across a room for the first time. Our celebrations then were happy, proud, excited, the celebrations of any parent watching their daughter take her first steps. But they don’t compare to the celebration of today. 

   In the past three days, Hannah has started to walk independently around the house. She has done this before, but not for several months, and not at all so far in the new house. The house that was needed and chosen specifically so that she would have the space and freedom to walk around. Seven weeks after we moved in, she’s finally moving too! 

   The celebration of this, the elation in seeing her make her own choice, decide where she wants to be and take herself there, of seeing how proud she is when she reaches the kitchen, where the bowl of pasta on the sideboard is finally within reach, it’s a little breathtaking. 

   I never expected to need to applaud and exclaim for my 7 year old walking independently between her parents across a room, but I suppose that’s exactly why it’s so thrilling: a tiny act I would, by now, have been taking for granted, yet am instead cherishing and appreciating and wanting to hold onto with every muscle I have. 

 As we smile at each other over her head (which, incidentally, is much harder now she’s 7 and tall!) I know we are sharing the same thought: how do we hold onto this? How do we make sure it doesn’t slip away, again. Neither of us know the answer, but we do know that we will keep on applauding and exclaiming, coaxing and cajoling,  and leaving big bowls of pasta just ever so slightly out of reach . . .

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I just want my book!

  Every night, at bedtime, Hannah chooses which book she would like to have read to her in bed. We give her a choice of 6, laid out in front of her on her duvet, she looks at and then touches/picks up/throws at you the one she wants. For some time now, the book of choice has been Charlie and Lola, ‘Excuse me but that is my book’ (which is funny since Hannah has never liked watching Charlie and Lola and generally yells at it on TV until we turn it over).

   Tonight, as she reached out to touch the cover, she simultaneously looked at me and said a word. Not a recognisable word, not ‘Charlie’ or ‘this book’ or ‘for goodness sake mother don’t you know I ALWAYS choose this book?’, but a word, a new one.

    Hannah rarely makes vocalisations anymore which are more than a shout, we hear the occasional ‘nono’ or ‘dada’, but that’s really all that’s left. So a new sound, in purposeful context, said with intonation and intent, is a rare treat. She touched the book, looked at me, and spoke.   It took my breath, something inside me leapt a little, and for that infinitesimal moment, I got the most microscopic, fleeting glimpse of what it might feel like to hear her voice again.

   And then she giggled, so I giggled back, started reading, and by the time Lola was shouting ‘I just want my book Charlie!’, Hannah was snoring, with a slight smile still lingering around her mouth and closed eyes. I guess she likes the sound of her voice too.

 

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To her teachers, old and new

  Last night, I wrote a blog about the imminent end of term and Hannah’s  last day at her school of the past 3 years. Today, the actual last day, things were much as expected, and I have no wish to recount the goodbyes, the tears, the sadness. But one thing I did reflect on and do want to recount, are the words I heard repeatedly today, from the blog readers, from friends and family, and mostly from Hannah’s wonderful, tearful teachers:

they (the new school) will love Hannah just as much as we do, of course they will, how can anyone not love Hannah.”

   It’s a beautiful, genuine response. It makes me incredibly proud and happy to know that my little girl makes people fall in love with her and, even more beautifully, makes it impossible for them to imagine others not falling in love with her too.

   But I want to say this to Hannah’s teachers, old and new. You (the old) have fallen in love with her cheeky smile, her mischievous giggle, her dirty laugh, her dancing eyes, her life-filled personality. You have been able to fall in love with this because she has shown it to you, and she has shown it to you because you have made her feel happy and safe and able to shine. You have heard her giggle because you have made her laugh. You have seen her mischief because you have delighted in it. You have been given her smile because you have given her yours right back. She has given herself to you because you have let her, and because you have celebrated her.

    But Hannah does not smile and giggle and sparkle all the time. I should know, I’m her mum, she saves the worst bits for me! The truth is that she doesn’t give everyone she meets those best bits. Not everyone earns them. So not everyone falls in love with her. It’s a simple equation really: if you want to see the smile and hear the giggle that will make you fall in love with her, you have to make her happy.

 So please, new teachers, make her happy. Enjoy her naughty laugh, celebrate her mischievous giggle, acknowledge her sly sideways glance, give her the cheeky smile right back, let her make you fall in love. Let her be Hannah, and love her for it. Please.

 

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The end of term

   Tomorrow is the last day of term. I have not felt this desolate or scared, this guilty or helpless, have not shed this many tears, since the days following diagnosis. And no, it’s not the prospect of 5 and a half weeks at home with my children that is the cause. Tomorrow is the last day of term and Hannah’s last day ever at her school. In September, she will begin at the new school and the next chapter will begin, but it doesn’t feel quite that refreshing and hopeful, not today. Today it just hurts.

 I wrote about all the reasons why this is difficult to cope with back in October, following the parents’ evening at which the need for the move was discussed.

https://rettsyndromeandmeuncut.wordpress.com/2014/01/30/some-inevitable-truths-from-october-2013/

That parents’ evening, incidentally, is the one and only time (so far, tomorrow will be the second) on which I have ever driven away from the school in tears of sadness. Even when I first looked around, one of 10 school visits I made, when I was still struggling to come to terms with the concept that my daughter would need to go to a special needs school at all, I left this school in tears of relief, knowing that my little girl would be happy. And she has been. Ridiculously happy. Happy to the point at which we need to remind her to breathe as well as smile. Honestly.

Three weeks ago we all went along to ‘Celebration Evening’ (this is actually parents’ evening, but the name they use instead should tell you everything you need to know about the school!) and Hannah did not stop smiling or giggling the entire evening. Better still, neither did her teachers. Her laugh is infectious and her cheekiness irresistible, they are all as in love with her as we are, she knows it and she loves them back. I have never seen Hannah anything other than almost-unable-to-breathe-for-smiling when at school. This school.

A DVD came home with her in her school bag this afternoon: ‘A Farewell to Hannah’. I made the mistake of watching it. Hannah was all smiles, she loves watching the people she loves on the big screen and will happily watch the home movie of last Christmas’ school play on repeat. I smiled too, through the cascade of tears. It is a beautiful film made with love and sincerity, a testament to all that Hannah is and to all that they have recognised in her. It fills me with absolute pride alongside absolute sadness and fear and guilt. How do I take a child away from a place and people who make her this happy and who love her so vividly? How can I know that she will be loved like this, that everything that makes her ‘Hannah’ will be recognised, again? I can’t know, no one can guarantee me this, so how do I take such a gamble? Can anyone promise me that on-site therapists, hoist systems and a hydrotherapy pool are worth this goodbye? Is there any way of knowing that this is the right choice, in the same way that I knew, for certain, that it was the right choice three years ago? No. I can’t know. There is no certainty now.

There is, instead, a constant dull ache inside. I feel like another small piece of me has broken off and drifted away. I feel like I have let my little girl down so completely and I don’t even know how to make her know that I am sorry. I feel like somehow she will feel that I have given up on her, that I no longer believe in her, that I have underestimated her completely. I am so scared she will hate me for taking her away from the place and people she has come to know and love so intensely. I am so afraid that she will not understand why, and yet equally afraid that she will.

Somebody asked me today if Hannah was upset about it too, or if it was just me finding it difficult. I replied that I don’t know. How can I know how she feels or what she thinks about this? I can explain it to her but I can’t discuss it with her. I have no way of knowing if she knows what’s happening, why tomorrow is different to any other day, what ‘goodbye’ really means. But I do know this: Hannah loves instinctively, and she remembers the people she loves. I used to think that she lived only in the here and now, retained only what was in front of her at any given moment, but I learned a long time ago that this isn’t true, that she remembers and holds onto things (mostly people) just like any child. She adores, for example, my dad, and when my mum comes to visit without him, she will look around my mum, searching for him with her eyes. On the occasions when she finds him, she shouts her excitement and smiles broadly, her love for him has not diminished in his absence.

So I know that Hannah will remember these people, and remember that she loves them, and if this is so, then surely she will also miss them? Wonder where they have gone, why they have disappeared, why I have taken her away? Yes, maybe I’m over-thinking it, but I can’t stop thinking about it. How can I know it’s the right thing to do? I can’t know, but faced with an 8 minute film which celebrates everything within my daughter that I love and which they too have seen, understood, loved and valued since day one, it is hard to not want to simply stamp my feet and say no. The truth is that I want with all of my heart to say no, but I know I can’t, that I shouldn’t, that I have to force my head to win this time.

And so it is that I will get up in the morning, face final assembly, say our goodbyes and then make my head force my heart to embrace the next chapter. I know that there are lots of rational arguments and logical reasonings to be offered, and I know that some of you reading may even be amongst those who already know, understand and love Hannah and who will be right next to her as the next chapter begins. My hope and trust lie very much with you. I wrote this in my last blog on the same subject, but I will write it again, just to be clear: this is not, and never has been about how good one school is against another. Both schools are excellent, we are lucky. This is, and always has been, about what is right for Hannah and where she needs to be for her sparkle and her ‘Hannah-ness’ to shine just as brightly as it can. It has shone incredibly brightly for the last three years and has illuminated the world of those who have shared those years with her. If you don’t believe me, just watch (read) the movie . . . .

“Hannah you are such a determined young lady, you have a bubbly personality, you have a beautiful smile and infectious laugh. You’ve taught me so much about life and learning, thank you for being who you are. We will miss you so much.”

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Learning to swim

   I’m not a big fan of extended metaphors which try to explain the reality of living with a child with profound disability. Inevitably, they come unstuck somewhere along the way and, even if they don’t, they generally describe the writer’s experience of living with their situation as if their experience is exactly the same as everyone else’s in the same boat. Which, of course, is not true. Even more generally, such metaphors tend to dissolve into somewhat fluffy figurative language through which we understand that even though life is challenging and not at all what the author expected, it is nevertheless wonderful and he/she wouldn’t change a thing. Which, I suspect, is also not entirely true.

   It may, therefore, seem odd (to those of you who continue reading) that what now follows is an extended metaphor about the reality of living with a child with profound disability, written in such an arrogant voice as to assume that my experience is the same as others and that amongst all the challenges and battles and heartbreaks, there are celebrations too. I apologise. I also partly blame the lady I overheard saying the following to her friend whilst queuing for a latte . . . 

 ‘Parenting doesn’t come with a manual’. I’ve heard it said many times before, I’ve said it myself, I imagine exasperated parents will be saying it for centuries to come. The most important job you’ll ever do comes with pretty much no guidelines. But if becoming a parent is like being chucked into the deep end of the swimming pool without a float, then becoming a parent of a child with complex special needs is like being chucked into the ocean, somewhere resembling the shark infested regions of Gansbaii and the piracy threatened coasts off Somalia, with rocks tied to your feet. It’s frightening and unfamiliar, cold and lonely, and no matter how many swimming lessons you’ve had or how confident your front crawl, you will still feel utterly unprepared.

   To start with, you will sink. You will feel like you are drowning, you probably are. Some days, you might even hope you do. But you can’t give in to the waves, because you are not swimming for your own survival, you are fighting the tide for someone else’s sake, so you must keep your head above water. Which is pretty much what you do, once you have managed to shake off the rocks which initially drag you into the darkest depths of the sea. You tread water. You survive.

   Of course, eventually you learn to swim in these cold, unchartered expanses. You grow accustomed to the temperature and to the depth, you find things that help you to float and you learn to avoid the things which will make you sink. You learn quickly that it is best not to look too far ahead or too far down – the horizon shifts and the midnight zone is too dark to contemplate, so you focus on the skies directly overhead and the waters within reach. And from there, with your head above water and the sharks and pirates pushed out of mind, you find it is possible to love being in this ocean. You see shades of blue which the chlorine pool will never offer. The depths beneath you may be daunting, but they are also bright with corals and colours with which the tiled, clinical pool surface cannot compete. The storms may be violent and tempestuous, but you value the peace that follows far more than you could ever appreciate the pool’s constant calm.

  You still sometimes (often) long for the safety of the pool: the neat, clean edges, the quantifiable depth, the floats and armbands,  the ladder escape route. But the hope for safer waters on the horizon, for a passing cruise-ship in possession of tea bags, duvets and normality, for the paradise desert island you barely dare dream of, this hope gives you a strength to just keep swimming that you never knew you possessed.

   I could keep this running (swimming?) for pages. The metaphor is easy: a vehicle through which I can distance myself from the daily details of living with Rett, can exchange ‘me’ and ‘us’ with ‘you’ and ‘they’, and turn the raw realities into a picturesque image in which crises are ‘challenges’ and pain creates strength. I could tell you about the unpredictable currents, the ones which lull you into a sense of calm and stability but then turn you upside down and back to front without warning, leaving you gasping for air and relieved just to be able to tread water once more. I could tell you about the tiny, transparent, deadly jellyfish whom you can never quite put out of your mind, even when the underwater world beneath you is at its most beautiful. I could tell you about the glimpses of land on the horizon, land towards which you swim as fast and furiously as you can, never quite managing to get within grasping distance yet certain that you are all the while getting that much closer to the place where you know  your paradise island will one day appear. 

     As I said, I could go on, but I won’t. Because, as I also said, it’s flawed. I know it comes unstuck, I know it’s a somewhat cliche version of an old idea, I know it’s really just a convenient way for me to avoid writing about those daily details and raw realities of the last few months. You see, it has been a testing time, more so than usual, and stress and exhaustion levels have reached all-time highs. But we’re still standing (swimming?!) and in some ways we are now in better (friendlier) waters than we were before. It’s a blog for another day, when I am brave enough to choose between the positive feel-good perspective and the brutal truth angle, but in short, we finally moved house. We love our new little patch in the ocean, we are fortunate to have it, things (some things) are better. But of course the cruise ship has not rescued us, the paradise island has not magically materialised, the new patch is still in the middle of the ocean, not the pool.  Obviously, I knew it would be, a new house is not a cure for Rett Syndrome, but there is always an element of crashing back down to earth when something you have hoped and waited for for so long, turns out not to make everything okay. But, as I said, that’s a blog for another day.

   For today, I can’t help pondering this clichéd, arrogant metaphor I’ve created and realise that perhaps its biggest flaw is this: I was stubborn and strong-willed as a child (astonishing, I know) and refused to learn new skills in the conventional manners, preferring to take myself off in secret or with a trusted adult to learn and practise said skill until I was good enough at it to show the world. Which was why, when I was eight years old, my Grandma taught me how to swim. In the sea. I have preferred to swim in the ocean ever since.

 

 

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A tea to take out

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Today is the end of an era. The closing credits of a classic. The final curtains on a record-breaking run. Our Starbucks has closed.

It’s okay, I know you’re probably laughing and rolling your eyes and tutting at the very notion that the closing down of an international, tax-dodging, fat-cat corporation could invoke any stronger reaction than a cursory shoulder-shrug. I know it’s absurd to feel any kind of emotional attachment or reluctance to say goodbye to a place as impersonal as a chain-outlet which holds over 23,187 stores in 64 countries (I Googled that by the way, I didn’t just know it, I’m not that obsessed!)

But you see, it is personal. Sorry, it was. Stop tutting, and I’ll try to explain.

Hubby and I were sitting in there yesterday morning (our final family trip to ‘the café’) trying to work out why, how and when we first started going in. We couldn’t remember what it used to be before it was a Starbucks, but we knew we didn’t go in there for some time once it became one. Some kind of anti-establishment protest we thought. Hilarious. But then I remembered that actually, although Hannah was only 9 months old when we moved here and was, to all intents and purposes, an entirely ‘normal’ and healthy little girl, we were rarely able to take her into coffee shops or cafes at all. I don’t recall that it was impossible, but I do recall that I used to look at other small people sitting contentedly whilst their mums chatted or engaged them in play with scribble pads or buggy toys, and know that I couldn’t do it. Hannah wouldn’t do it. The screaming episodes and outright protests didn’t start until around twenty months, but even in those earlier days I remember that it was challenging.

I don’t know when that changed, I really can’t pinpoint the time period, but I do know that one of my all-time favourite photos of Hannah was taken in Starbucks (I may even ask if I can have the painting which forms the backdrop!) She still has her beautiful curly bunches, is standing independently (on a sofa, little rebel) and is wearing the red winter coat I loved best of all coats, so I know that it was way before diagnosis and still in the days when we believed everything was fine. And she’s laughing, so I guess somewhere along the line we discovered that she was happy in there, in a way in which she was not happy in smaller, crowded, ‘quainter’ places. Which is undoubtedly why we kept going. As with many other things we learned in our life: if Hannah likes it, don’t fix it!

It’s a big store, with lots of space for buggies and wheelchairs and distance enough between tables to minimize the possibility of grabbing hands to reach their targets. The music is generally low and calm. The exit route is clear and easy. The disabled toilet is spacious and clean. Over the last four years, these are the things which have come to matter and which, I realise, have made it possible for us to ‘go for a coffee’ as a family without anxiety. As we chatted through the history of our family’s relationship with this store, sipping our tea (grande, English breakfast, one teabag) and Americano (black, with space for milk), from takeaway cups, we recalled that the habit of the takeaway cup was formed almost five years ago, when entering ‘the café’ at all was a gamble. We would hedge our bets and get take-outs, just in case we needed to make a fast getaway. Later, they became safer options on account of Hannah’s increasing tendency to grab and hit out at anything within lunging distance. We haven’t had to make a fast getaway for some time, but the grabbing persists, as does our health-and-safety habit.
As I said, the timeline of the relationship is blurry, but some memories are precise. In the days and weeks following diagnosis, for example, I can clearly remember sitting in there alone, wading through Rett Syndrome literature and tears and forms and more tears. We would give each other an hour ‘off’, just to get out of the house and breathe and think, and I would go there, knowing that even if people thought I was a crazy woman crying in the corner, they probably wouldn’t look twice. The impersonal, at that moment, was perfect.
But then happier times too: the two weeks of hubby’s paternity leave after son number 1 was born: drinking tea, planning fundraisers, watching a newborn sleeping, full of hope and awe and joy, finally, again; the slow realization that it was actually possible to meet friends for a tea, even with toddlers, because our sons would be content with a scribble pad and buggy toys – a whole new world; the even slower realization that even if all three children were awake, we could manage the ‘normality’ of a quick cuppa because actually, Hannah liked it; the rare moments of being just a husband and wife with time to talk and sip tea and watch the world go by.

I have collided with almost every friend I have in ‘the big Starbucks’ and shared time with them; I have been interviewed (about Rett Syndrome) by national and local newspapers; I have done endless marking and written innumerable reports; I have filled in a plethora of forms, ‘pinged’ out plentiful emails and made many, many phone calls; I have wept and laughed, received and given good news and bad, felt despair and hope. Hell, I’ve even done a pregnancy test (positive, son number two, happy news).

But it’s more than all of this. It’s not just the backdrop, the impersonal scenery in front of which several acts have been played, it has become part of the play itself. It has provided some of the loveliest characters in the show. Over the last couple of years the staff (now friends) in this store have supported our fundraising, donated raffle prizes, displayed endless posters, distributed fliers, chained our collection buckets to their tills and sacrificed their own tips jar for four full months. We didn’t ask, they just did. They ask after Hannah, they know about Rett Syndrome, they talk to others about Rett Syndrome. They ask for our news, they tell us theirs. They do not bat an eyelid when Hannah shouts (because she still does) and they smile conspiratorially at me when other customers do. I don’t know for sure, but I’m pretty certain they crank up the caffeine levels when they can see we haven’t slept. Yep, it’s become pretty personal indeed.

So yes, it may be just another money-making global chain, but I am sad to say goodbye. Yes, there’s another one just down the road, but it’s small and cramped and there’s no way we’re getting in there with a buggy and a wheelchair and those grabby hands. Besides, Hannah has cried every time we’ve so much as tried. As I’ve written before, she’s an instinctive little girl who makes intuitive judgements about people which are pretty much unfailingly right. She adores those who are genuine and modest, who speak to her like a 7 year old girl, who look her in the eye, and who smile at her with their whole face. It’s ironic, I guess, that she, and we, have found those things within the four walls of a multi-million pound corporation’s coffee shop. One of 23,187. I can’t think of a good cliché for what it just goes to show, but it must just go to show something.

A good friend (one with whom I have shared many a cup of tea and moan about life in ‘the big Starbucks) recently amusedly shared with me the findings of a formal study into the demographic of regular customers of the three major coffee shop chains in this country. Starbucks, apparently, is the preferred choice for the young mums (I was delighted to find myself in agreement with this group, obviously!), Costa was the favourite of the ‘middle-aged’ woman, and Nero was number one for the men. My friend was dismayed to find that she fitted the stereotype for her age. I guess it’s time I started fitting it too. Mine’s a large tea . . .

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Day Sixteen: sunshine and sorrow

Today is day 16. The sixteenth consecutive day on which I am walking 5 kilometres above and beyond those distances I would generally cover on an average day. After today’s walk, there will still be 33 days to go. 165 kilometres. The 5×50 – a fundraising event which, for me, is challenging less because of the actual distance covered and more because of finding the time to do it. When I signed up, I naively imagined it might be an opportunity to have an hour ‘off’ each day, a chance to just think and walk and be alone. Of course, the reality is that most days, time constraints mean it has to be done pushing a buggy or a wheelchair, and almost always under pressure to get somewhere fast. But I’m enjoying it: the weather’s been good, the pace is quick, it’s taken me to places I don’t often go and forced some long family walks and days out which we might otherwise have missed. And as always, physically doing something tangible and visible makes me feel mildly less helpless and inadequate in the face of my daughter’s future. Very mildly, but it’s something. Better than sitting still.

   So really, as the Head of Deliverance (‘Twenty-Twelve’, if you haven’t watched it, please do!) would say, that’s all good. And yet, I’m feeling low. Fragile. Easily knocked down, despite the sturdy speed walking and growing calf muscles. And this is where things start to get hard to explain.

   When people feel down or are in a bad mood, our usual human reaction is to ask ‘why?’ and ‘what’s happened?’ Often, and of course I generalise here, there are answers to those questions – some identifiable event or occurrence which has recently happened to make that person feel bad. But when there isn’t an answer, the sadness or the bad mood seems less rational, less justified somehow – why are you feeling bad when nothing bad has happened? It’s pretty simple cause and effect I guess. The problem with this is that the person feeling bad can then also end up feeling like a fraud and a drama Queen, seemingly finding reasons to feel low when in fact, nothing has changed. Obviously, you’ll have gathered, I’m no psychologist. These theories are based on nothing more than my own experience, the experience of feeling low, having no quantifiable, tangible explanation or reason to provide for my ‘lowness’, and consequently feeling guilty and fraudulent on top of the original low.

   I know this sounds crazy and over-analytical, but hear me out. If you tell someone, even a close friend or a family member, that you’re having a bad day, feeling unhappy, want to cry, they will invariably ask you why you feel this way and what has happened to cause it. If you then say ‘nothing’, their sympathy and support, I suspect, is likely to be a little diminished. It’s a little like the childish response ‘because I am.’ Why are you sad today? Because I am. Hmm. We like to understand things, to be given reasons, to be able to provide answers and fix problems. If we are given nothing to fix, what then?

  You see, the underlying reason for the lowness, is Rett Syndrome. Of course it is. But Rett Syndrome, unless you are one of a handful of highly expert scientists on whom my hopes rest, is pretty much unfixable. More than that, Hannah was diagnosed three years ago. It’s not, many may feel, a valid reason for feeling miserable TODAY, any more than yesterday or tomorrow, if nothing has actually happened. Sometimes, when my husband or I admit to others that we are having a bad day, the question will come back ‘why, what happened?’ and the answer is usually ‘nothing’. You simply can’t keep saying ‘well, Hannah has Rett Syndrome, that’s what happened’, it just doesn’t wash. And if you try to explain what actually happened to make you suddenly want to curl up and cry, such as ‘I saw a little girl with bunches who reminded me of Hannah’s bunches before she started pulling out her own hair’, you sound like someone who is walking around life looking for reasons to feel sad. Self-indulgent, melodramatic, crazy. Call it what you will, it just doesn’t sound like a reasonable explanation for your sudden sorrow. Except it’s not sudden, it’s chronic.

   As it goes, things are not too bad at the moment. Hannah is still highly unsteady and shaky but she has walked between rooms a couple of times recently, her new medication is not wiping her out like the last one did and her splint seems to be helping. We even had a fairly positive pediatric appointment. It’s true that she has been shouting and crying a lot, waking absurdly early every morning with incessant screaming, and (TMI warning) filling her morning nappy to the point of requiring bedding changes and showers, every morning for the last three weeks. These things are difficult, but they are normality, they do not bring me down or make me want to sob. Yesterday morning started in exactly that way, but we dealt with it as usual, and carried on unperturbed, in good moods. The thing that floored me completely and unexpectedly yesterday, was the briefest of glimpses of a little girl who used to be in Hannah’s group at nursery.

   It was a beautiful sunny day, we had walked 3 kilometres, pushing the buggy and wheelchair uphill much of the way. Hannah had fallen asleep awkwardly onto the tray of her wheelchair when we found ourselves walking a few metres behind a family of four – the little girl Hannah’s age and her younger brother. She was skipping next to her mum, swinging her hand and chatting away. I should have called out to them, made an effort to catch up enough to stop and chat, but I couldn’t. I was fighting tears which had risen up out of nowhere and feeling like I had been punched in the stomach. I walked the next kilometre with my head down, shoulders silently shaking, knowing that if I actually gave in to the tears I might not be able to stop them.

   Thereafter, the daily challenges which we usually take in our stride and can even smile ironically about, were acutely painful. The meltdown in the park, the need to carry her (she is now 3/4 of my weight) some distance when she simply refused to walk any further, the throwing and hitting of fork, food and us, I noticed them all. Each of her shaky, wobbly steps felt like an additional brick added to the pile which had been unceremoniously dumped on my shoulders by that one glimpse. Hannah smiled most of the way home, found her brothers’ buggy-board acrobatics hilarious and was affectionate at bedtime; the boys thoroughly enjoyed the walk and the woodland explorations; they all happily devoured a fish and chips treat en route home. There was much to be enjoyed and celebrated throughout the day, but the dull ache of sorrow had been brought to the surface in that one moment and I couldn’t make it subside.

   If you asked me whether we had a good day yesterday, I would say ‘yes’ because we did, and because saying ‘no’ would lead to the question ‘why’, to which I could only reply ‘because we saw a little girl, for about three minutes, who used to go to nursery with Hannah’. Now don’t try telling me you wouldn’t think that answer would make me melodramatic, mad or just inherently miserable!

  The ‘good’ news, for me at least, is that I’m not any of those things, and it’s not just me. I first read the article below, about chronic sorrow, a couple of weeks ago, and although I find it desperately sad to think that it applies to me and to people I love, it is also immensely reassuring to realise I am not, in fact, a miserable mad woman. I bang on a lot about grief and sorrow and the total rubbishness of Rett Syndrome, because I have to. Nobody’s going to sponsor me or help us raise money to find a cure for this thing if I talk about how lovely Hannah is and how Rett Syndrome has made me stronger and how much joy and laughter all my children bring me. So I do talk about the bad stuff, the hard bits, and I don’t doubt that there are some people who read my posts and blogs and emails and newspaper pieces and wonder ‘why isn’t she over it? Why doesn’t she just move on and stop getting all upset?’ ‘Why is she still on about this sorrow, three years after diagnosis?’ In all honesty, sometimes I’ve wondered those things myself! Which is why this article is, to me, something of a relief. If you’ve persevered with reading all this ramble, then thank you, and please take a couple more moments to read this. It’s shorter, and far better written, I promise!

  As for me, I’m off for a 5k walk in the sunshine.

http://mcitpfamilysupportnetwork.ning.com/profiles/blogs/chronic-sorrow-healing

http://www.justgiving.com/213250stepsCloser2TheCure

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Peaches and Cream

http://www.youtube.com/watch?v=0p56vq1beSo

When Hannah was little, we would hold her in our arms and dance softly around the kitchen to this song every night before bedtime. It’s a song which came with us from Australia, but which became truly real and meaningful only once we were holding our little girl. Often, she would fall asleep in motion; often, I would cry tears of pure happiness. My cup didn’t feel just half full, it felt overflowing.

On the day Hannah was diagnosed, we kept our pre-bedtime tradition, but the tears which rolled were different. They were tears of despair, of fear, of grief. For a long time, I couldn’t listen to the song at all, much less dance with my daughter to it. The words and the sentiment and the memories hurt too much. Rett Syndrome had punctured my cup, and in the weeks and months that followed, its contents seemed to drip steadily away.

Today Hannah is 7, and I can dance with my daughter again. There is still hurt, but there are happy tears again too. I cannot pick her up and rock her to sleep in my arms anymore, but I can hold her hands and dance softly, tell her that she has filled my half empty cup, and promise to keep on trying to fill hers.

‘All I know is, all I know is, that I love you’.

Happy birthday beautiful.

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Turning Seven

It is 1.04am as I climb into a cot-bed and seek some slumber beneath a Spider-Man duvet. The three year old to whom the bed belongs is sprawled out, with the gangling limbs of an awkward adolescent, across two thirds of the marital bed. The half of the marital who is not me, is scrunched up in the available third. I choose Spider-Man over the spare mattress in Hannah’s room because the two year old (who shares a room with the absent three year old) snores less loudly and is less likely to wake in a manic mood at 5am, than the 6 year old. But tonight, for a change, it has not been the infinite supply of exercise books to mark which have delayed my journey to bed. Tonight it has been the imminent 7th birthday of the snoring 6 year old which has kept me up beyond curfew. Or rather, the annual combination of anxiety, perfectionism, desperation and excitement, which surround the anniversary of my first-born’s birth.

 There are the practical decisions for a start: what to give Hannah? What to give a child who gets stressed out by the opening of presents, puts everything she sees directly in her mouth, and has not been able to play with toys or turn the pages of a book for four years? Actually, I have discovered, there’s plenty you can give Hannah, but little of it is sold in any shop.

 Three years ago, wearied, frustrated and saddened by shopping for gifts that barely ignited her interest, I realised that the thing which interests Hannah most, is people. She loves watching people, and most of all she loves watching the people she loves. So, a tradition of personalised, laminated, Hannah-friendly homemade photo albums was started. Every birthday and Christmas I go through all the photos from the year, print off those I know will engage her, mount and laminate them individually on card, and put them into a small ring binder which she can flick through, throw and nibble on without too much danger.

  More recently, thinking she would soon be getting a new, bigger bedroom (the saga continues) a new tradition of canvases emerged, also based around her love of people. Every birthday and Christmas sees a new canvas edition of Hannah with the people she loves most. Every evening, when I take her into her bedroom, I ask her ‘where’s Grandad?’ and she looks, unfailingly, at his photo and smiles. Last year, the large canvas print of Hannah with all her classmates and teachers in the snow, prompted probably the smiliest, most intensely happy Hannah-reaction to any present ever. She didn’t even try to eat the wrapping paper. Two new photos will join her canvas gallery on Tuesday, I can only hope they will raise the same smiles. 

   Then, there are the books. Before regression started, Hannah loved to turn the pages of her favourite books and would sit surrounded by them for hours. After that, she could only rip. Now, she can only grip loosely before either throwing  or dropping. But it’s clear that she still enjoys books and still has her favourites. So, wanting to keep those stories alive and accessible to her, another tradition started: every birthday I order two extra copies of her current favourite book, systematically destroy them both with a pair of scissors (as an English teacher, this always hurts) and then reassemble the pieces into a poster- sized collage which tells the story without a fine motor-skill required. They are framed and hang on her wall and, again, she shows absolute recognition of them every evening. The awareness and the smiles are worth the literary sacrilege.

   And then, aside from the presents, there’s how to celebrate. Hannah does have friends who are her peers, but the truth is that her interaction with and interest in them is less than with many of the adults in her life, or than with the able-bodied children whose physical energy and movement she finds hilarious. Nothing is funnier, for example, than her brothers and cousins flinging themselves around on a trampoline. So her ‘parties’, for several years now, have been more like family and friends get-togethers, through which we endeavor  to surround her with all the people who make her smile the most. But since putting all those people together at once can be a) logistically impossible and b) overwhelming for Hannah, her birthday persistently ends up spanning a two week period, during which we dedicate weekends and free time to ensuring Hannah spends time with everyone she loves. This year, we kicked off proceedings on the 15th and will be running through to the 25th. It’s wonderful, undoubtedly, but let’s just hope neither of the boys ever think to ask why their birthdays only last a day!

    Come to that, let’s hope they also never question why their birthdays don’t ever include, as Hannah’s have, a week in Center Parcs (a Make-A-Wish gift), a haunted cottage in Cornwall (pre- diagnosis, pre-sons and pre-belief in the supernatural!) or a shiny new eye gaze computer (the result of months of fundraising). They won’t ask, I know, because already they love being part of the extended preparations, and somehow I think they understand the answer anyway: because they have gifts Hannah may never possess.

   Everything I do for her birthdays, the late nights and homemade gifts and coordination of two weeks of celebrations, are my desperate, control-freak attempt to make up for the things she doesn’t have on her birthday, or any other day. Over-compensation, you might say. I know the homemade gifts are lovely and worth far more than the toy shops’ trappings, and maybe I would choose to make her personal presents anyway, but I would truly love to be able to just ask her what she’d like, or to take her shopping for a new dress or shoes or the scooter all her friends have that she just can’t live without. I’d love to be able to give her something I KNOW will interest and excite her.  She does seem to love her photos and story frames, it’s true, but it’s still hit and miss whether the unwrapping process will raise a smile or a meltdown. The smiles are the holy grail, but the meltdown still hurts, no matter how much I prepare myself not to let it.

 The sleepovers, the discos, the bowling trips, the ice- skating rinks, they’re all a little missed too. Inviting a hand-written list of my daughter’s 7 year old friends to a party she has chosen, would be a dream. I miss all those 7 year olds in my house, even though they’ve never been here. I’d like to meet them and to listen to them singing ‘happy birthday’ to my daughter, and to watch her blow out her candles, scrunch up her hopeful brown eyes and make a wish of her very own. 

 I love Hannah’s birthday, despite what some of the above may suggest. I love it precisely because of how overboard we go, of how much time we spend with wonderful people, of how, mostly, we are rewarded with Hannah’s smiles and giggles and the absolute certainty that she is a loved, loving, remarkable, enchanting little girl. But I’m not sure it is possible for it not to be double-edged: a reminder of the perfection of her arrival in our world, of all the hopes and dreams we had for her then, of how they all seemed so possible, of how they have changed beyond recognition. I never imagined that on the eve of my daughter’s 7th birthday, I would be hoping to one day hear her say ‘mummy’ again.

   So yes, I do over compensate, I do everything I can to make sure that she never ever sees any sadness in my eyes or ever feels that her birthday is anything but a pure celebration. Because it is a celebration, ironically perhaps even more so because of the journey of the last 7 years and how they have taught me to celebrate every blessing we have, and there are fewer blessings greater than Hannah’s smile. So the celebrations will run for another 7 days and I will roll into bed far too late tomorrow night after blowing up too many balloons, hanging too many banners and eating too much icing whilst decorating one enormous number ‘7’ cake. I will go overboard, again, because I want Hannah to understand and feel and believe that I thank God and the stars and every other formidable force of nature in play, that she came into our world 6 years and 363 days ago, and that she has made it a better, brighter, more beautiful place to live every single day since.

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