I Hope You Know

Ten years old. Ten. It’s a terrible cliché to say ‘where did that go’ and ‘hasn’t time flown’ and ‘I can’t believe my baby is 10’, but it is all frighteningly true. I wish that my birthday message to you could be one of unadulterated joy and celebration – this is what you deserve and it is true that ten years of you have brought us so much to celebrate. But I can’t say ‘I wouldn’t change a thing.’ I can’t say ‘I’ve loved every second.’ I can’t say ‘I can’t believe how independent and grown-up you’ve become.’ If I could say those words in truth, I would. If I could make them true, I would. I would take away the dark days within those ten years and I would celebrate the strong-willed, stubborn, fiercely independent neo-teenager I know you are inside. But I won’t lie to you. I suspect you would see straight through me if I did. I know you know that it’s not all been peaches and cream*. I know you know that your birthdays are bitter-sweet – a reminder of the milestones not met, of the memories not created, of the sleepovers not had and the almost-adolescent arguments not fought. I know you know that I over-compensate – that your birthday is the immersion in balloons and banners and fuss and frenzy and presents and parties and people that I make it, partly so that there is no space left; no space for the thoughts of what ‘should’ be on this day to creep in.

I read other people’s posts and messages on their children’s birthdays. I can’t write what they write. I can’t say that I’ve watched you be sworn in to the Brownies, or stand on stage and read aloud to the whole school, or that I’ve burst with pride as you learned your first ballet steps, or had to breathe deeply and wave goodbye as you’ve gone on your first overnight school trip. I can’t say that I have watched you develop friendships, find your own place, choose the people who will shape you and be with you as you grow into a woman. I can’t write that I have listened to you tell me your hopes for who that woman will be, or that I have told you that your dreams are yours for the taking, or that part of being your mum is to stand back and let you fly on your own. I can’t write these things, and I know you know it, and it hurts.

But here’s what I can write, and here’s what else I hope you know.

I can write that I have watched you cope with challenge after challenge, the likes of which would defeat most, and still come through smiling. I can write that despite your brain struggling to do what your body tells it, you have learned to walk, to point at things you want, to grasp your own drink, to pick up Pringles with the precision of tweezers and to hit a switch which can give you a voice. I can write that I have watched you walk to the front of your school hall to receive awards and applause from you peers and teachers, and that you have done so with a sparkle in your eyes and a composure which I, standing silently sobbing with pride at the back, have lacked. I can write that I have watched you captivate people and make them fall in love with you wherever you go and that I have stood back and seen how effortlessly and instinctively you just ‘get’ others. I can write that I see, in your eyes, the incredible girl you are and glimpses of the girl you will be when you are free, that I will do whatever I can to bring your dreams within your grasp, and that in the meantime I will not let you fall.

I hope you know that you simply could not be more loved. I hope you know that the heartache that came to us 7 years ago, is nothing compared to the elation and indescribable joy of holding you in my arms 10 years ago, and of being your mum every day since. I hope you know that you have cemented our family together in a way which I could never have imagined, and that you have brought people and love into our lives which I didn’t know existed. I hope you know that you have taught all of us – me, your Dad, your brothers, your family, your friends, your teachers – lessons about ourselves and about life which might otherwise have gone unlearned. I hope you know that even without a voice, you have spoken to us all and changed our worlds irreversibly. I hope you know that when I shout, cry, implore you to stop screaming or to go to sleep or to just breathe, it is not you I am shouting at or you I am angry with, it is Rett Syndrome and it is myself. I hope you know that for every time I have lost my temper or my patience or my attention, I am truly sorry, I am trying to be better, I will keep trying.

I hope you know that your laughter is like sunshine and that when you’re happy, I’m happy. I hope you know that those thoughts of what should be, these are not of what should be for me – you always have been and always will be enough, everything, all I could wish for; these thoughts are for the things I wish for you in your world and your future. I hope you know that, although I used to talk about grieving for the little girl I thought I had lost, you have taught me in the last 7 years that it is impossible and absurd to grieve when the little girl I have is precious, unique, wonderful, unexpected you. I hope you know that I carry a memory of your voice in my heart and it is the sweetest sound I know. I hope you know that your brothers love you unconditionally, that they would protect you fiercely and are better little men because of you. I hope you know that I am proud of you in ways that I cannot begin to express and I am proud to be your mum with every fibre of my being. I hope you know that the tears through which I type are tears of love and wonder and come from a heart which can barely contain all that it feels for you, my Hannah. Ten years ago, you made me into a mum, you gave me the most important, most precious gift I have ever been given, and you have been teaching me how to be better at it every day since. I am grateful to you every day. I am grateful for you every day. I hope you know that.

Hannah

*’Peaches and Cream’ by John Butler Trio – a song we played for you every night when you were small, as we rocked you in our arms: “For she came, and landed in my arms, she filled my half empty cup.”

To find out more about Rett Syndrome or the work of Reverse Rett in speeding treatments and a cure for girls like Hannah, please go to www.reverserett.org.uk

 

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Daring to believe

As a kid (and as an avid tennis player and supporter) I used to feel a sense of loss on the second Monday of July every year – the day I would wake up and realise Wimbledon was over and I would have to wait another year before it returned. This morning I felt that way again, only this time the wait is for four years. The Paralympic Games are over.

Now before I go further, let’s be clear: I am in no way an expert on any of the sports, on any of the Paralympians, or on Brazil. I barely caught more than twenty minutes of the Olympics this year and I have to confess that I have hitherto made little effort to follow other sporting events for disabled athletes (although this is certainly going to change). I am also not a fan of the cliché, yet I feel it is true to say that the past two weeks have been somewhat life-changing. For there can surely be few things more inspirational, humbling or awesome (in the genuine sense of the word) than watching these ‘superhumans’.

Over the past twelve days I’ve been moved to tears and covered by goosebumps again and again, humbled by the stories of fear and loss which have been somehow turned into stories of achievement, excellence and triumph. The physical prowess is obviously incredible, but what truly astounds me is the mental and emotional capacity: the strength, resilience and courage to take a personal tragedy and turn it into the ultimate positive experience, into the opportunity to excel: this is remarkable.

Yet whilst observing such stories is overwhelmingly positive and life-affirming, it’s hard to watch and not to question your own mental strength, your own ability to find the positives and pursue the dreams, regardless of the obstacles thrown at you. For these athletes, somehow, there is no ‘can’t’. I would like to take ‘can’t’ out of my vocabulary, and out of Hannah’s life, too.

Several times over the past week, somewhere in the early hours of the morning as we’ve stayed up for ‘just one more race’, I’ve turned to my husband and asked him ‘why can’t Hannah do these things?’ It’s a rhetorical, genuine question, because although I know the answer I also can’t quite articulate it fully. In the face of a medal-winning equestrian without either of her legs, a man without arms becoming the most decorated Paralympic male swimmer in history, a world-record breaking gold medallist sprinting without her sight, Hannah’s physical disabilities seem relatively mild and the notion of ‘can’t’ seems defeatist. I’m not suggesting that she could be a Paralympian (because the answer to the question is that Rett Syndrome has stolen Hannah’s ability to control her movements and therefore the decision to train or to race or to participate is not a choice she can make) but it does make me question whether the ‘can’t’s in Hannah’s life are hers, or ours. Is it possible to create a ‘can’t’, simply by saying it?

I’m not crazy; I know that no amount of me saying ‘Hannah CAN talk’ is going to make it happen, but is saying she ‘can’t’ doing her a disservice too? Because actually, Hannah can talk, just not in the traditional sense of the word. She talks with her eyes, with her laugh, with her shout, with her whole being. The fact that she doesn’t use words doesn’t mean she doesn’t speak, perhaps in the same way that just because Jonnie Peacock doesn’t run on two feet doesn’t mean he doesn’t run! And perhaps this is the key – the old adage of when one door closes another window opens – when a ‘can’t’ is imposed on us we need to find an alternative which creates a ‘can’.

Our alternative, I suppose, apart from grasping at eye-gaze technology and therapies and splints and anything else which might ENable Hannah, is to choose to pursue a goal ourselves. Unlike Ellie and Jonnie and Richard and Ali and Libby and Sarah and every single other one of the 147 GB medal winners, Hannah cannot make that independent choice to pursue a goal, to train hard, to dedicate her time and energy to achieving something which seems out of reach. And so, instead, I think we make OUR choice to pursue a goal, to dedicate time and energy to achieving something which we know is within reach, so that one day, she CAN.

Because, I’ve realised, I do (as the Paralympics slogan goes) ‘dare to believe’; believing has underpinned my world for five years and has now become my day job. I dare to believe that one day Hannah will be free from Rett Syndrome and will be able to run around a track, throw a javelin, swim a length, vault a bar, shoot a hoop and maybe even climb a podium.  I’ve realised, too, that superhumans are everywhere. People who have turned a problem into a positive, a crisis into an opportunity, and people who have overcome the odds to triumph. I know plenty. The single mum who has turned a messy divorce into an opportunity to start her own successful business; the friends who turned redundancy into the chance to travel the world, the colleague who turned her own loss into a reason to set up a life-changing charity, and the little girl who, despite being unable to speak or use her hands or walk across the room, knows exactly how to light it up. My ultimate superhuman, Hannah.

There’s been a lot of talk over the past few days about the ‘legacy’ of these athletes, of the social progress which comes from events like these and of the lessons they teach us all. It would be nice to think that their legacy is global and profound, that it challenges perspectives, shifts attitudes and redresses relationships. It would be wonderful to think that in four years’ time, every country’s mainstream channels will give these athletes the coverage and the attention they so thoroughly deserve, and that in the meantime more of us (me included) will follow their journeys, hold them in equal regard to their able-bodied peers and show our children that difference is not disability. In our house I think their legacy will be about finding open windows, focusing on everything the 9 year old superhuman who lives with us can do, and keeping on daring to believe. Can we cure this thing? Yes. We. Can.

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the beauty of ‘difference’

In recent days I’ve started to feel a little uncomfortable. Guilty. Self-questioning. Not that these are new sensations for me (I went to an all girls’ grammar school, after all), but this has been more than schoolgirl awkwardness. In the past two weeks, my Facebook thread has been flooded with articles, blogs and posts about the new non-invasive test for Downs’ Syndrome. Having been catapulted into the world of special needs almost exactly 6 years ago, I have several close friends who have children with DS, and many of them have taken an active and passionate stance against some media’s one-sided portrayal of this new test as an unequivocably ‘good thing’. Their stance is simple: since the test is now non-invasive, more women will opt to have it, which means more women will be given a ‘high’ probability of having a child with DS, which means more women may take the decision to terminate their pregnancy. For the record, none of them are actively pro or anti-choice, nor is this in any way a blog about those debates. Their issue is misinformation which leads to life-changing (or life-ending) decisions. Their issue is that the new test may mean that effectively, we screen out DS. We eradicate ‘difference’.

My friends, the parents of Billy and Beth and Naomi and Fred, to name only a few, are indignant and, I think, afraid. Indignant that the media has too frequently used the wrong terminology and displayed a certain degree of ignorance about DS (The Telegraph did retract its statement that DS is a ‘debilitating disease’); indignant that this signifies a lack of understanding of their children and the immense joy and potential they bring to the world; fear that this is the start of a slippery slope. And I completely see their point. It is scary. Should our society value children (anyone) with ‘differences’ so little, that we screen them out? You don’t need to have met Billy or Beth or Naomi or Fred to know the answer.

Billy, Naomi, Beth

So then why am I guilty? Why self-questioning? Because amongst my newsfeed and my friends vehemently defending their children and trying to educate the world about how incredible and valued they are, I find myself, trying to change my daughter.

Scroll through my FB page. Keep scrolling through the past 5 years. Take a look at my blog, at the website I started, or even just at my (second) job title. Much of my life is taken up by trying to eradicate a syndrome and to change my little girl. I have written and spoken the words ‘one day the diagnosis of Rett Syndrome will be followed by the words “but don’t worry, we have a cure for that”’ and I myself have had early gender testing in pregnancy to determine whether or not I needed to go on to be tested for Rett  (I was having a boy, so I never had to make the decisions which would have followed had it been another girl).  I have effectively dedicated a lot of my spare time and half my career to eradicating ‘difference’.

Of course, it is different (not least, obviously, because our aim is to take the syndrome out of the child, not to prevent the child existing because of the syndrome). But it is also different because Rett Syndrome IS debilitating. Hannah will not ever (unless my spare-time and half-career pursuits are fruitful) live independently or have a job or get married. As things stand, it is unlikely she will ever make it out of nappies. So far in her young life she has already followed the exact opposite trajectory to that which Billy, Beth, Naomi and Fred have followed. She has lost skills, not gained them, she has become more dependent, not less. So many of the things which my friends have objected to in the media’s portrayal of DS, are actually true of Rett.

And yet, of course, Hannah is incredible. Scroll through my FB page, look on our website, read any blog, and I feel sure you will see that Hannah’s place in our lives is unmistakably precious. She loves and she is loved. She laughs and she makes laugh. She is at the heart of our family and our friendships; her giggle is one of the best things in my world; she has taught me how to take nothing for granted, how to truly enjoy a moment, and how to treasure those things which are said without words. So how is this something that needs changing?

This is not a new question or struggle in my mind. Nor do I think it is mine alone. I know I am not the first ‘Rett parent’ to wobble about investing so much time and energy and hope into the future rather than enjoying and celebrating the little girl I have standing (or sitting) in front of me today. I don’t think I am the first parent of a child with special needs to feel that it is a very thin and fragile line between the unconditional love and acceptance of the child you have, and wanting things to be different. It is a dichotomy I feel constantly, and never more so than when debates like DS screening come into the media spotlight.

My answer, I think, is something which I have spoken and written before: I love and accept my daughter unconditionally, I would happily live in Holland forever, I celebrate her exactly as she is; but the future I want to change is Hannah’s, not mine. I want her to live, in both the literal sense of surviving and the poetic sense of experiencing the world in all the ways possible. I want her to wake up tomorrow morning, every morning, for another 80 years, long after I’m gone and long after she has needed me to get her dressed.

So where do I stand in this debate? I don’t know. Do I, or have I ever, wished I hadn’t had Hannah? No, not for a second. Would I choose to terminate a pregnancy if I knew the child had Rett Syndrome? Probably not. Do I think women should have choices? Yes. Do I think too much choice can become dangerous? Yes. Do I want Rett Syndrome to be cured, to no longer exist in our society? Yes, absolutely. Do I want to eradicate ‘difference’ or screen out those children who, in my limited experience, have more to teach and offer the world than most of us realise? No, absolutely not.

So where I stand is clearly in a bit of a no man’s land, which of course is fine, since a) where I stand is unimportant, and b) as I said, this isn’t about the debate or the highly sensitive issues which surround it.  Really, I just hope that where I stand is a place where I continue to question myself, support my friends, love my daughter, fight for tomorrow, enjoy today and treasure the Billys, Beths, Naomis, Freds and Hannahs who make my world a better place.

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Unfinished Thoughts

Capture

I haven’t written a blog since June. Actually, that’s not strictly true; I haven’t FINISHED a blog since June. I’ve started several (too many to admit) – some on screen, a couple on discarded till receipts, and the rest only in the late-night sleepless caverns of my mind. Several half-written, incomplete, unpublished thoughts. For someone as OCD, stubborn, fearful of failure and afraid of the unknown as me, this is problematic.

 
So why have I left them hanging? Why has someone who hates to leave anything unfinished, failed to complete so many thoughts? There are some, I suspect, which I knew would never reach print. Even as I started them, I knew they would either never be completed or could never be published. How, for example, could I let others read about my guilty internal struggle when my friends bring little girls into the world? About a certain unspoken pain and wistfulness which I have felt, beneath the excitement and joy, when several of my friends have had beautiful, precious daughters this year? That particular blog has been started and deleted and started again several times – my own personal therapy/confession/punching bag – but nothing more.

Another impossible-to-finish or allow-to-be-read musing was about losing a friend, again. I know: to lose a friend once can be seen as misfortune, to lose one twice is simply careless. Especially when it’s the same friend. Even more especially when actually, you hadn’t managed to find him again after the first time and yet still, somehow, losing him again hurts. The first blog I ever published was about losing this friend; three years later it seems ridiculous to be in the position of having the same thoughts and feelings and still being unable to just ‘let it go’. Much like the friendship, I suppose, the blog remains hanging – not quite finished, yet not able to continue. ‘Closure’, I think they call it. Or lack thereof.

Others have remained incomplete simply because life moves on: a blog started in a particular moment about a particular experience, often just doesn’t feel right when revisited a week, or more, later.  I started one blog the same night that my daughter’s downstairs bedroom was finally completed. We had spent the evening building her bed, ready for her to sleep there for the first time the following night. It was a blog about, as is so often the case, mixed emotions: elation that the long-awaited build was finally finished; relief that the treacherous climb/carry up and down the stairs was over; fear of her sleeping downstairs; sadness that the adaptation was needed at all; guilt that she would no longer share a bath with her brothers. They were raw emotions that night, but when I revisited the screen two weeks later, they had eased. We’d adapted to the new situation, as humans do, and, whilst the relief, sadness and worry all remained, those initial anxieties and fears just didn’t seem so important anymore. We’d moved on to the next challenge; the moment had passed.

Other moments have come and passed and come again. The worryingly entitled ‘The Trouble with Fundraising’ is another which has had several starts and deletions. Mostly started the morning after a ‘successful’ fundraiser, I’ve tried to express how the sense of elation and achievement of the night before is then replaced by the sinking realisation that your daughter still can’t talk. It sounds ridiculous, I know, but perhaps anyone who has ever invested time, energy and emotion into taking just one tiny step on a long and uncertain journey, will understand. An event can go better than I had ever hoped, but when the guests leave, the clearing up is done and the money is counted, my eight year old still needs her nappy changing. And it leaves me deflated. Perhaps it is fitting that I have never quite managed to get that particular blog finished – the fundraising journey’s destination is not yet reached – the tiny steps continue.

But this is not the News – I have not only been writing (or half-writing) about the bad stuff.  The fundraising blog, for example, has its counterpart: thoughts I have written before but which have proved true time and time again this year. Last Christmas Eve I wrote ‘For Hannah, the Night Before Christmas’ – some thoughts not only about the amazing people who surround us and whom I might never have met if life had worked out differently, but also about the little girl (my little girl) who has brought these people together and makes them love her unconditionally. There have been innumerable occasions to inspire the same sentiments this year, but when written down they seem schmaltzy, repetitive, inadequate. Perhaps ‘see last year’s entry’ will just have to do!

Yet this year has not been without its reasons for schmaltz either – the ashamedly brief scribble intended for my husband on his 40th birthday: a celebration of the man he is and the remarkable father he has become, in the face of something he could never have prepared for. There was little more to the composition than that – my attempt to find words for how I believe our daughter feels about her Dad proved too difficult. Putting words in Hannah’s mouth is something I neither can, nor really want to do. She will say it herself one day, until then I will let her eyes do the talking and hope my husband understands that their vocabulary is far wider than that of my laptop!

Finally, my favourite, and the one most likely to actually reach completion: another blog about my daughter’s eyes; the simplest joy of reading Hannah a bedtime story and hearing her tell me, without any words, that actually she does quite like me after all. The ‘I love you’ which I am finally starting to realise doesn’t need to be said out loud to be understood. It, too, will be a brief blog, since that’s pretty much the whole story – no twist, no lament, no wistful musings, just a sleepy bedtime and a little girl who can say more with her eyes than her mum can with any blog – finished or not.

In a way, these half-written blogs and unfinished reflections, sum up the past 6 months pretty well: a collection of emotions and experiences with few clear ends or answers, with dangling ellipses and uncertain next chapters. Right now, there are four situations around Hannah which are uncertain and complex, and that’s just looking ahead to the next two weeks! 2016 will not be without its reasons for sleeplessness and late-night scribblings, of that I am certain. Perhaps I should resolve (as people do like to resolve things at New Year), to always finish these thoughts I begin. But I’m not really sure it matters.

In some ways, unfinished thoughts are apt: poetically, a metaphor for life with a condition like Rett Syndrome – a condition as yet without answers, an unknown ending, a story I can’t finish; or, less poetically, simply the reflection of a mum with two jobs, three children and a mind less capable of clarity than when she was twenty! Either way, they’re the way things are, and in spite of the OCD tendencies, I’m fine with that. After all, there are more important things to ensure get finished: from the next tiny step of fundraising on the journey, to saying ‘thanks’ to all those amazing people, to enjoying  tomorrow’s cuddle with my friend’s little girl, to savouring tonight’s bedtime story with my own. These are the things I resolve to make happen, and maybe one day, if there’s time, I’ll even write about them too. Happy New Year.

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Happy holidays.

“Oh you’re so lucky, getting all that holiday.” It’s a phrase any teacher knows well, and a phrase which any teacher tends to find at least mildly galling. Yes, we’re ‘off’ for 5 weeks in the summer, but let’s not forget that for the rest of the year we are teachers, counsellors, social workers, nurses, parents, administrators, moderators, mediators, technicians,  carers and negotiators, to name but a few of the hats we are called upon to wear during the school day. We are up late marking and planning, we are giving up weekends to report-writing, we are taking calls from parents before school, after school and in the microcosm of time they call ‘lunch’, and trust me, most of us will spend at least one of those enviable 5 weeks planning and preparing for the onslaught of September. As I saw posted somewhere last week, ‘we don’t get 2 months off a year, we just do 12 months’ worth of work in 10.’ Quite.

But this is not a diatribe about the role of a teacher in this league-table-driven society of ours.  In fact, I do feel privileged to be a teacher, not least because of the nightmare which childcare presents to non-teacher working parents in those 5 weeks ‘off’.  I am grateful that, as a teacher for the past ten years, I have pretty much escaped the juggling act of work with extortionately priced holiday camps, but as the mum of three small children, one of whom is profoundly disabled, I have not escaped the sense of challenge which those 5 long weeks represent. My juggling act has been of a different nature, and when even my teaching colleagues have wished me a ‘happy holiday’ it’s been difficult to imagine what part of the weeks that were to follow could possibly be defined as ‘a break’.

As a mum with 3 small children, a wheelchair, and a husband who is NOT a teacher, my holiday juggling act has been this: how do I manage to have all three balls (by which I mean children) in one hand (by which I mean at home at the same time) as little as possible? How do I use the childcare options available to mean that I have days with either the boys, or with Hannah, but not too many with them all? Let’s be clear: this is not because a) I CAN’T deal with the 3 children I freely chose to have, on my own,  b) because I don’t WANT to be with those 3 children I freely chose to have, on my own, or c) because those 3 children don’t want to be together. I can deal with them, I love being with them, and they are the best of friends, but in all honesty, a day at home can be daunting. Put bluntly, it’s tough.

Other holidays – Christmas, Easter, half terms – aren’t so bad. Not because they’re shorter, but because the summer is always a particularly poignant reminder for me of all the things we can’t do. Social media doesn’t help, of course: endless pictures of holidays abroad, trips to the beach, picnics and farms and woodland rambles. Just the simplicity of being able to go to the park with all my children, just because the sun is shining – these things are not really options when I’m on my own. Not yet. My boys aren’t yet quite old and independent enough to be able to be left to their own devices, but my physical presence and attention must be Hannah’s. When I’m pushing a wheelchair with my 45 kilo daughter in it, my hands are literally full, and when she decides she doesn’t like the venue or the menu or the company, every other part of me is consumed by damage limitation too – singing, dancing, jumping, feeding  – whatever works to keep her happy. But in the meantime, can I be sure my sons are safe? In school holidays, when queues are inevitable, places packed, crowds chaotic, the odds for a Hannah ‘meltdown’ are higher than ever, but my need to watch the boys is more crucial. Few parks have any equipment which is accessible for a wheelchair-user, and who can blame an 8 year old, watching other children swinging, climbing and playing, when she cannot, for crying? Most of the time, I want to too.

So, we stay home. But this is not without its challenges. There may not be queues, but in all honesty it still sometimes feels like one long waiting game. Waiting for the next meal , waiting for it to be a reasonable time to allow them to watch TV, waiting for Daddy to get home, waiting for bedtime. It falls on me, of course, to be the all-singing all-dancing all-entertaining clown, taking us seamlessly from one high-intensity activity to another. To be fair, it doesn’t feel a million miles away from teaching during an Ofsted inspection, and the 8 year old is the hard-to-please inspector! I will typically spend a good portion of the day dancing around the room to Olly Murs or One Direction, encouraging the boys to join me as backing singers and karaoke kings. It entertains our tough audience for a while, but Hannah’s personal playlist is set: if we veer from the approved tracks, it is met with screams and tears; when the playlist is done, we must move on.

So, we go in the garden. Hannah loves to watch the boys leaping around on the trampoline or racing frenetically up and down the grass – the noisier and clumsier the better! But inevitably, the life span of just watching is limited, and soon she is bored. I can just about lift her onto the trampoline, or into her swing, but these activities have a brief life-span too. The truth is that, in the absence of a truly amusing human (which, apparently, despite my best efforts, I am not), or of innumerable packets of crisps (which is not highly recommended by the dietician!), Hannah loses interest.

She used to love messy play – I would fill the sand table with cornflakes or cold spaghetti, and she would stand for ages exploring the textures, throwing food at her brothers, sneaking in a mid-morning snack when I wasn’t looking. But she can’t stand at the table anymore, and anyway, she developed a dislike of getting her hands messy not long after she was diagnosed. Sand and mud will go straight in her mouth, as will pens, paint, chalk, glue and scissors, making craft-related activities pretty tough too. It’s thrilling to me that my boys will sit endlessly and build, create, draw, colour, play, paint and imagine, but it is also a painful glimpse into a normality which we, all together, cannot inhabit. A summer holiday destination to which we do not have tickets.

So yes, the next 5 weeks do daunt me. For the first time in my working-parenting life, I have a non-term-time only job (as well as the teaching one) and two school-age children, so this summer I will be juggling work with extortionately priced holiday camps, working hours with childcare, lesson planning with the charity job with the kids. The two days a week of childcare options must now be used at the same time for all the children, leaving us all at home three days ‘off’ each week , creating our own chaotic, high maintenance, round-the-clock-entertainment, mummy-driven normality.

.  I know there will be moments of giggling, fun and magic, and moments of frustration, helplessness and sadness. There will be moments when I feel like I’m doing okay, and moments when I feel like an utter failure. It is only 8.55am today and all of those moments have already happened: the magic of seeing my boys show Hannah the pictures they have drawn and hear her giggling at their excitement, swiftly counterbalanced by the frustration of the incessant screaming which accompanies every second of ‘waiting’ time. And let’s be clear, Hannah’s scream is that of a 45 kilo child who puts every ounce of her being and every fibre of her own frustration into every scream. It is the scream which brings me closer to the edge than anything else. But her giggle is the thing which makes me smile most too, and since she can switch between screaming and giggling within seconds, a whole day in our house can feel like one very long, unpredictable, emotional rollercoaster ride.

Today is day 3, and we’re doing alright. Yesterday we had 14 children round to play all morning, and another 3 in the afternoon  – filling our home with those truly amusing humans Hannah loves, and creating a chaotic normality indeed! I know that we are immensely fortunate to have a house and garden to which we can invite people, and even more privileged to have friends who wish to come, so we will open up our doors and be the playgroup of the summer just as much as we can. If yesterday is anything to go by, the boys will have a ball, Hannah will be entertained as long as the house is full, will scream at me as soon as it is not, and we will all be worn out by bedtime. Which may not exactly be the dictionary definition of a ‘break’, but it’s as close as this teacher is going to get. Happy holidays.

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The importance of being Grandad

summer is coming! (21st-22nd March 09) 080       I saw a remarkable video once of a man who had been blind from an early age, able to navigate his way around unknown cities and streets, through the use of sonar. By making clicks with his tongue and listening to the rebounding echoes, he could “see” the world in sound, in the same way that dolphins and bats can. This astonishing use of sound is testament to the idea that when one sense is weakened or absent, the others compensate and become stronger, almost super-human in their efficiency.

Hannah’s senses, as far as I know, are all fine. In fact her opthalmology and audiology appointments are amongst the very few where I get to leave to the words ‘everything seems to be normal’. But, of course, the same can’t be said for her abilities. She lacks speech, independent mobility, purposeful hand function. She is reliant on other people for about 98% of her daily existence. Yet, like the blind man learning to see the world differently, Hannah has her own compensatory strengths. Her smile and ability to engage and captivate those around her, even without words, is undoubtedly one. Her intuition is another.

Even from a very early age, long before any signs of ‘difference’ and even longer before diagnosis, Hannah seemed to react instinctively to people – she knew whom she liked and whom she didn’t. I don’t expect this is particularly unusual for very young children – rather like animals they have an instinct and understanding which takes little heed of social rules or etiquette (babies are allowed to cry and scream when placed in the arms of someone they’re not keen on, whilst toddlers are encouraged to hug and kiss ‘Great Aunty Pat’ even when they are reluctant!) The thing that always seemed a little unusual with Hannah, though, was that she was invariably right in her judgements. Which is not to say that we frequently introduced her to people whom we didn’t like ourselves (!), but she was a remarkably calm and accepting child (symptomatic, apparently, although back then we just assumed she was a ‘good baby’) and it was very rare for her to react to anyone with anything other than smiles. On the few occasions on which she did, let’s just say we could understand why.

But there are some people for whom she has always saved the best smiles, and she has been unfailingly right in her instinctive judgements of them too. Hannah didn’t meet her Grandad, my Dad, until she was just over three months old, by which time she had smiled willingly for plenty of strangers and been calmly content in their arms. But with Grandad, it was more than willing acceptance or placid contentment, it was love. Instinctive and intuitive love. The feeling was mutual.

Over the past eight years, as so many of Hannah’s physical abilities have weakened and regressed, that intuitive bond between her and her beloved Grandad, has only strengthened and grown. It is now an acknowledged family truth that Hannah will be happy if Grandad is there (and, most likely, vocally displeased if he is not). She will look around corners, objects and people (even Grandma!) to see if Grandad is coming too, and will make her displeasure known if he isn’t. She will move across a room faster, and be more determined about where she is going, in order to get to Grandad, than she will for anyone (or anything, perhaps with the exception of Pringles) else. She will break into infectious laughter, even in the midst of tantrum and misery, for no reason other than that their eyes meet. He is undoubtedly her hero.

But why is this instinctive and intuitive, and not simply about a little girl loving her Grandad? Because of this: here is not a Grandad who has earned a child’s love through endless piggy backs, or games of hide and seek, or the building of dolls’ houses or buying of ice-creams, or flying of kites.   Hannah’s Grandad hasn’t done any of those things with her, ever, because he can’t. He is disabled too. Twenty-seven years ago, in the summer before I started secondary school, my Dad had a stroke which left him without feeling or any movement in his left arm and with limited use of his left leg. In my daughter’s lifetime, he has never once been able to sit with her on the floor and build a tower, tunnel with her through a sandpit, or even bounce her up and down on his knee. But oh, how she loves him. Completely, unconditionally, instinctively. The feeling is mutual.

Sometimes I wonder if this is because they ‘get’ each other: does the grown-up man who can remember forty-three years’ worth of cricket, tennis, ski-ing, travelling, somehow understand the eight year old girl who can remember two years’ worth of babbling, crawling, tumbling, learning? Do they somehow share an experience of being different, of not always being able to join in, of being often on the side-lines, which gives them membership of a rather exclusive club where only they can understand the jokes? When all the two of them need do is exchange a glance to both fold into fits of laughter, it certainly often seems that way!

My Dad once told me that he still often dreams of ski-ing and that, rather than find these dreams sad, he finds them wonderful and exhilarating – an experience once had and re-lived. I have often wondered what Hannah dreams of – can she dream of experiences she has never had, and if she does, do they make her happy or sad? I wonder, could my Dad and my daughter’s connection be a bit like this: the shared understanding of things had and lost, of dreams not quite tangible but nevertheless exciting, of happiness and contentment on a level which the rest of us can’t seem to understand?  I hope so. It is a strangely comforting idea and undoubtedly a beautiful thing to watch.

Today, my wonderful Dad, Hannah’s hilarious Grandad, turns eighty. As part of his present we made him a movie, consisting of all the photos we could find of him with his grandchildren over the past eight years. There are beautiful photos of him with all of our children, unquestionably, but the Hannah-Grandad moments inevitably dominate:  whilst getting a photo of Hannah smiling and still is generally a challenge, it is virtually impossible not to take several photos of her and Grandad either gazing adoringly at each other or mid-giggle at one of their secret jokes. As I watch the film myself, it is difficult not to be desperately emotional about the bond between them and the unique place he holds in her life.

I have no way of knowing how Hannah’s relationship with her Grandad might have been had she not turned out to have Rett Syndrome, but I do know that when it comes to my Dad and my daughter, those things which may appear, to the outsider, to be weak or missing, count for nothing. They don’t need dolls’ houses or piggy backs or kites to be everything a Grandad and his granddaughter should be. Hannah makes her almost-eighty year old Grandad a child again, he makes her light up, they make each other laugh and sparkle. Hannah’s words might fail her, but her laughing eyes and her mischievous giggle in the presence of those she truly, instinctively loves, say it all, and there is no one who makes those eyes laugh or that giggle resound quite like Grandad does.

Happy birthday Dad.

summer is coming! (21st-22nd March 09) 074   summer is coming! (21st-22nd March 09) 057   IMG_8873

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Damaged Goods

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Sometimes, in trying to explain the impact that Rett Syndrome has had on our lives, I have referred to myself and my husband as ‘damaged goods’. People don’t respond to this very well in general, I think they see it as some kind of self-deprecation or an overly negative view of my life. To be honest, even without Rett Syndrome, I would probably still think it’s a valid description; after all, we are both heading rapidly towards forty and have inevitably had our share of ‘damage’ along the way: broken hearts, break ups, lost loved ones, rejections: if you make it to thirty-something without some baggage and damage (also known as experience) then you’re probably, well, in need of therapy!

  The damage I refer to, though, is not those inevitable, human scars left by thirty-seven years of living, but the invisible impact of Rett, the ways it has changed who we are and how we look at the world, even the world which others might think is unrelated to Rett syndrome. Human beings (and I generalise here) have a wonderful capacity to function in a state of ignorant bliss as long as the world around allows them to: if we don’t have to deal with something, we generally don’t. That wonderful state of ‘it can’t happen to me’ is hard to reclaim once ‘it’ has. When the odds of something are one in ten thousand, only the pessimist would assume that their child will be that one. We didn’t, why would we?  But when you get those odds once, it becomes hard to shake the idea that it could happen again. If we’re not, after all, immune, what else can attack us?

  Rightly or wrongly, this thinking permeates everything that comes after. In many ways, it can be a positive lesson: don’t take things for granted, celebrate what you have now, find joy in the tiniest of steps. But it is in an incredibly fine line between the positive life lessons and the damage: a fear of celebrating the good things in case they are taken away; a tendency to imagine worst case scenarios almost constantly; a terror of allowing yourself to relax, even for a second, because this will be the exact moment when the worst happens.

  My eldest son, with whom I was four months pregnant when Hannah was diagnosed, got Norovirus when he was nine months old and had just started crawling. He was dehydrated and weak and was admitted to hospital, connected to a drip and put on an oxygen machine. As they fed the tube into his nose and he barely had the strength to cry, I could feel all my worst fears creeping in. The damage was clear. The doctors and nurses clearly thought I was paranoid; they had a ward full of kids with Noro and they confidently assured me that he would get better, they all do. But the damaged voice in my head was saying ‘sometimes kids don’t get better, my son might be that one who doesn’t.’ Lying next to him in our sterile room, watching the child I had celebrated only days before sitting and crawling, playing and babbling, now unable even to sit up or roll over on his own, how could I not feel like history was repeating itself?

  The same thing happened when our second son was only three weeks old. Not Noro this time, but bronchilitis: an ambulance, an oxygen mask, a nebuliser, a tiny chest working overtime, a tearful mother and a host of nurses who clearly thought my tears were an over-reaction. They referred to the ‘bronchi’ ward and called my son a ‘bronchi ‘ baby, proving to me that this was far from uncommon and barely cause for crying. But every time they told me not to worry, ‘he’ll be fine’, the voices of professionals telling me that Hannah would be fine replayed through my head. ‘She’ll be okay, she’ll catch up’, they said. She isn’t, and she won’t.

Of course, on these particular occasions, my sons have turned out to be okay. They have got better, as the professionals said they would, they have returned to their crawling, babbling, independent breathing states, and then to standing, walking, running, climbing and even miraculous talking. Tiny steps and celebrations. Yet even just writing this makes me nervous. The fear of enjoying, of relaxing, of taking anything at all for granted, is always there. It’s not just that anything could happen tomorrow, it’s that it might already have happened, I just might not know it yet. Hannah has had Rett Syndrome since she was still growing in my womb, but it took three years and six wonderful months of ignorance before we knew. The world that we have come to inhabit since then has made me aware of so many conditions and possibilities, so many more dangers than I had ever dreamed possible, that I feel it would be presumptuous to declare my children are ‘fine’. I add the disclaimer: ‘As far as I know’.

I imagine worst case scenarios constantly, I can see them happening right before me. Often, they’re based on the consequences of one random decision I have made, like choosing a particular route to drive, or leaving five minutes later than planned, or giving them that last grape. I take 10 or 20 or 500 steps forward in my mind and reach some awful conclusion which could all have been avoided had I just done one thing differently. Random moments and awful consequences: I’m no psychologist but it’s not hard to see where these fears come from. 

   I’m guessing you might be starting to think that a psychologist (or medication) is precisely what I need. I’m sure someone who did would say this too, but I don’t think I do. Yes, I do have these thoughts, these fears, these misgivings in my head all the time. But I also know that they cannot be fears to be lived by, either emotionally or practically. I cannot torture myself with impossible what ifs, nor can I subject my children to a life wrapped in cotton wool or endless trips to the ER for every sneeze or scrape.

In fact, in many ways, Rett has made me a parent who is simultaneously over protective and laid back: I worry endlessly about my children and the possibilities of tragedy around every corner, and yet at the same time the practicalities of daily life mean I am forced to stand back from my boys and let them flirt with danger far more than my heart would wish. Hannah is a 45 kilo 8 year old with highly limited mobility, zero awareness of danger and the need for almost constant attention: my hands and eyes (and entire body weight) are generally right behind her, which leaves two mischievous boys free to explore. In many respects I need them to be more independent than their peers, and so I must take the leap of faith to allow them to be.

Parenting of any child, I suppose, is always about taking leaps of faith – holding on and letting go at the same time, stifling your own fears so that they can be fearless, at least for a while. I don’t know and will never know what kind of a parent I would have been if Rett Syndrome had not stormed in and done its damage, but I hope that I can still be the kind of parent who tells her children that the storm is nothing to worry about ,and puts the minute chances of falling trees or lightning bolts to one side, so that she can dance with them in the pouring rain.

 

 

 

 

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Making it Personal

2013-03-19 09.52.37    There are 289 shopping days to go until Christmas, yet my two young sons already have their wish lists well underway. One trip along (not even inside)  the high street shops last weekend generated several excited squeals of ‘ooh look’ and ‘I would looove’, along with the obvious amusement of other shoppers overhearing my rather unseasonal ‘well, you’ll just have to write to Father Christmas’ on the first weekend in March. Needless to say, the birthday wish lists are coming along nicely too, and when those long-awaited dates do finally arrive, I am confident that it will take about twenty minutes on any high street (or indeed about 8.5 minutes online) to find a top wish-listed item and guarantee one happy birthday boy.

   Not so with The Girl. The Girl, imminently turning 8, is a much trickier customer to please. After all, she can’t write a wish list. Nor squeal excitedly. Nor tell me explicitly what she would really, really looove. Which is not to say, of course, that we can’t make some educated guesses. Over the last 7.95 years of living, breathing, sleeping, laughing, crying, dancing, eating and every-other-thing with our remarkable little girl, we have learned a thing or two about what she likes and does not like. Wordlessness certainly does not prevent her making her opinions on some subjects fairly well known, as I’m quite sure our neighbours would testify!

    But the fact that she can tell me very clearly that she would rather watch ‘Show Me Show Me’ than ‘Me Too’ right now, is not much help. Her opinionated shouts to show that she would prefer her brothers’ toast to her own cereal, don’t get me far for her birthday. Her wish list is limited. The high street shops hold little appeal. Toy shops are full of things she will simply bite and then discard. Clothes shops are full of skinny jeans and sparkly strappy tops (yes, even for 8 year olds) which are simply not designed for a child in nappies. Loom bands require, well, hand function. Wordlessness does make it harder to know what our daughter, beyond having her words back, would really like.

   The things we do know and which can be bought, have been exhausted: we already own every Olly Murs cd available; there are only so many box sets of ‘Balamory’ anyone can own and watch on repeat; her favourite books are already duplicated to allow for the chewing she subjects them to; and really, tubes of Pringles don’t count as an adequate birthday present for your only daughter.

    The trouble is, the problem runs much deeper than simply not knowing what to get. The annual brain-racking and search for inspiration has tended to exacerbate the already slightly double-edged approach to her birthday. I have enough close friends with children whose milestones have, like Hannah’s, not been reached, to know that I am not the only one who finds birthdays hard. And knowing that I can’t simply walk into a toy shop and pick out the age-appropriate-currently-trending-must-have toy, is just one part of it. I asked son number 1 what he thought Hannah might like for her birthday this year, he quickly replied ‘a Barbie?’ Whilst I balk at the gender stereotyping already somehow instilled in a 4 year old, I kind of can’t help wishing he was right.

    Fortunately, though, son number 1 also knows his big sister better than that, and when early this morning he stumbled across a fully-wrapped, giant rectangle of a present, he immediately enquired ‘is that Charlie and Lola pictures?’ ‘Yes’ (mildly impressed by either his super-power vision or his intuitive knowledge of his sister). ‘Ah, Hannah will love that.’ Let’s hope so, since it’s taken the best part of two nights, four copies of the same book and one entire Pritt stick to create. And that’s only present number one. 

   A few years ago, you see, the browsing of toy shops and even scouring of special needs toys internet sites, just got too depressing. And pointless. We pretty much exhausted the sensory toys options, most of which amused the boys (flashing lights, wobbly textures, whale-sound noises – what’s not to love?) but seemed to either alarm or bore Hannah. The swing and the trampoline were, admittedly , instant and timeless hits, but you can’t really keep up that level of present-buying every year (to be fair, we didn’t even keep it up for one year, the grandparents did!) The solution, I realised, was people.

Hannah loves people far more than she loves things (and almost more than she loves Pringles). She’s just not a material kind of a girl. Whenever we drag her round a zoo or farm, it is quite apparent that she would be far happier if there were people, not animals, behind the fences. She lights up when she sees people she loves, we have to remind her to take breaths in the presence of people who make her smile so much she forgets to do anything else, and she will shout distinctly at people whose attention she wants if they stop giving it for even a second. She’s all about the folks. And so, I ditched the high streets and specialist sites and instead started to think up ways we could ‘give’ her people.

Four years later, and one week before her 8th birthday, I am once again up at 1am, laminating A5 coloured pages onto which I have stuck individual photos of Hannah with the people she loves, taken since her 7th birthday. One per page, so as not to overwhelm, each one laminated, so as to be more easily turned over but less easily nibbled or torn, all inside a light laminated folder, so as not to be too damaging when thrown. The large picture frame is now traditional too: her current favourite book is bought in duplicate, the key pictures and words are cut up (imagine the guilt – an English teacher deliberately hacking books to pieces with scissors!) and then arranged within the frame (plastic, so as not to be smashed) to tell the story visually. Charlie and Lola will be the fifth addition to her collection, at which she looks and grins every evening. Weeks ago I spent another long night poring through photos to turn into large canvas (so as not to be smashed) prints, again all featuring people who make her smile. Her own smiles, when she opens these, are priceless. She needs reminding to breathe. She also needs more wall space in her room!

Some years, we’ve gone extra miles with the home-made theme. For her 5th birthday, we spent several preceding months filming all her favourite people singing all her favourite nursery rhymes, then edited it together and ended with a montage of said people dancing (or rather jigging about in embarrassment) to Olly Murs, of course. When she watched it the first time I needed reminding to breathe, she was so happy.

Don’t get me wrong, I still kind of wish that the high street would do. I suspect that I’d still want to make photo albums and write journals and create scrapbook montages of my children’s years anyway, but I’d also love to just ask my little girl what she wants and then take her out shopping to find it. I’d even quite like to be horrified by the strappy tops and to wonder if she really is grown up enough to be wearing nail polish and lip-gloss. But since the reality is that Barbie would most likely suffer significant hair loss and require fairly extensive plastic surgery were she to find herself unwrapped in our house next week, I’ll stick with the late nights and multiple Pritt sticks, and will feel wearily happy to be rewarded with the kind of smiles with which Barbie would never have met. Just so long as I don’t forget the Pringles.

 

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Ten Things I Wish I’d Known ‘Back Then’

I saw a Facebook post going round recently, one of those 50s-style, witty postcards, which said ‘sometimes I write down tasks after I’ve done them, just to get the satisfaction of crossing them off my list.’ This is me. I love lists. Family, friends and colleagues will verify this: Christmas gifts are not complete without a shiny new notepad, Monday mornings are not surmountable without the weekly ‘to do’ list fully compiled; the idea of approaching a child’s birthday party without at least two lists in operation is somewhat abhorrent. I can only assume it’s a control thing, a part of my obsessive compulsive personality which feels far calmer about life when I can at least create the vague semblance of being in control of it (!) Crossing something off a list is achievement, success, affirmation of having accomplished at least something today (even if, actually, I achieved it yesterday!)

Teaching and list-making are both friends and enemies: the lists are endless and the crossing offs are plentiful; but the lists are endless and the crossing off of one thing generally only generates the addition of another. You never get to put a big, fat, black whiteboard marker cross through the whole damn thing. Well, not unless you’re retiring, although by then I imagine the lists of things you can finally do now you’re not marking every evening are pretty endless too!

Parenting a disabled child and list-making are both friends and enemies as well. Five weeks after Hannah’s diagnosis (five years ago today, hence the reflective post), I had six weeks off work, less because of the emotional trauma we’d been through and more because of the magnitude of the lists which needed dealing with. There were a lot of things I didn’t know on that day five years ago, not the least important of which was just how many things there would be ‘to do’. In the early days, in my naivety, I would write lists which consisted of seemingly simple statements, such as ‘sort out seating’. Yes, I can hear the ironic laughter of those of you who have been here too. ‘Ah, bless.’ I, like you, quite quickly learned that in this game, lists need sub-lists, and sub-sub-lists, and that the chance of ever actually crossing anything off the ‘master list’, is pretty small. No big fat whiteboard marker here either.

And so for the sub lists: emails, letters, phone-calls, forms, applications, referrals, appointments, visits, assessments, trials, reports, battles, panels, appeals, and then systematically chasing up every one of those again. Repeatedly. For the obsessive compulsive list-maker and crosser-offer, a potentially satisfying exercise: lengthy lists of weighty sounding tasks (‘compile report for paediatrician’, ‘complete sensory diet profile referral’, ‘chase SALT, OT and EEG’) and multiple daily crossings off. Except, not only does the list never get shorter, I also learned that to actually cross an item off felt both fraudulent and risky. Fraudulent because to me, crossing out means ‘done’, and these things are not done until they have been acted upon and dealt with by the recipient; and risky because if it looked like it was ‘done’, I might forget to chase it up, and that might mean it never got acted upon or dealt with by the recipient. Not so satisfying after all.

Which is appropriate, of course. I’m not sure it would be right for me to be finding anything at all about my daughter’s debilitating condition ‘satisfying’. Certainly not the quenching of my own OCD needs. As I said, there are a lot of things I didn’t know five years ago today, but I’m pretty sure I did know that the opportunity to write more lists was not going to be the ‘silver lining’ to my almost-three year old’s devastating diagnosis. Which brings me to the point, the question which the observant amongst you might by now be asking: what are those ten things you wish you’d known back then? The answer is, I don’t know.

Which is not to say that I can’t think of any. In fact, I could rattle off a number of lists, I could even categorise them into themes. I could do, for example, the ‘what doesn’t kill you makes you stronger list’, featuring such bullet point classics as ‘I wish I’d known that we would be able to cope with what was coming without falling apart’, or ‘I wish I’d known what we, our friends, our family, and complete strangers, are capable of’. I could do the ‘time is the greatest healer’ list, including things I wouldn’t then have believed possible, such as ‘I wish I’d known that one day I would wake up and not feel physically sick inside’, or ‘I wish I’d known that one day we would laugh again, without guilt or fear’. The ‘everything happens for a reason’ list, quoting such cringe-worthy (yet true) clichés as ‘I wish I’d known how much my daughter would teach me about myself and the world’, or ‘I wish I’d known how we would learn to take nothing for granted and to cherish every one of our children’s tiny steps’. Or how about the pragmatist’s ‘how to get what your daughter needs’ list, covering useful points such as ‘I wish I’d known how to complete the DLA form in one sitting’, ‘I wish I’d known what all the acronyms mean and who to call for what’, or ‘I wish I’d known to start applying for absolutely everything at least a year in advance of Hannah actually needing it.’ Or, of course, I could do the ‘hope’ list: ‘I wish I’d known, on the day my daughter was diagnosed and I read that there was no cure for her condition, that actually, there might be.’

But there is no top ten list. Not this time. All of the above are true, but I think that honestly, with the possible exception of the last, I don’t think I’d have wanted to know any of this five years ago. I have written before that our understanding of Rett Syndrome and all that it entails for our family, came necessarily as a slow drip-feed, a gradual absorption of our ever-changing reality. The darker days, when I didn’t know that one day we’d laugh again, must be part of the process, as much as figuring out how to fight the battles and decipher the acronyms is. The tiny steps of the journey have been crucial to our survival of the distance so far and, I am sure, will continue to be. Besides, as much as I love lists, I could not possibly reduce everything I know now, which I didn’t know back then, into ten pocket-sized bullet points. Really, could any parent? Perhaps the one thing it might have been comforting to know, besides the possibility of a cure within her lifetime, would be that five years later, I’d be able to say that there wasn’t really anything I wish I’d have known.

As for that exception, that hopeful possibility, it has come to mean a whole new set of lists, sub-lists and sub-sub-lists in my life: emails, letters, phone-calls, meetings, trips, forms, visits, events, shows, concerts, sales, walks, runs, appeals, reports, requests, applications, and then adding it up and starting again. Items which I will happily keep adding and crossing off my lists until finally, the one bullet point on the master list is the only thing left. My big, fat, black whiteboard marker will be ready.

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www.holdingontohannah.com

www.reverserett.org.uk

 

 

 

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To Hannah, the night before Christmas

Eight years ago this Christmas, when I was six months pregnant with you, my first born child, my sister (your aunty) gave me a blank book. She had had her own first child 7 months earlier, and in the front of the book she wrote that it was a journal for us to record those special early moments, as we embarked on the greatest adventure. I did write, often and rambling, full of joy and awe and absolute happiness, for the 3 months before and two years after your birth. I made it a tradition to write on the eve of your birthday, of the new year, and of Christmas, and as many times as I could in between, trying my best to capture those precious moments of your growth and of that great adventure.

  And then there was a gap. Between your 2nd and 3rd birthday. A year in which I was simply unable to bring myself to open the book, far less to write in it. My entry for your 3rd birthday is still painful to read. It tells of dark and difficult times, the year of your diagnosis. After that entry, the journal ritual became a little bittersweet: birthday entries about how incredibly loved you are and how captivating your smile is, but beneath that, the inevitable sorrow of all the things I couldn’t write. All those things I had assumed I would be recording, but wasn’t. Yet I kept writing. I felt like to stop would be to admit some kind of defeat, or to suggest that somehow now your growing life mattered slightly less to me, which couldn’t have been further from the truth. Besides, I clung (cling) to the hope that one day you would (will) read it all yourself. But when the completion of the pages happened to coincide with your 5th birthday, I have to confess I was relieved. The ritual could stop.  I could stop spending the late night hours before each birthday trying to scribble happy thoughts through blurry tears and smudging ink.

 There are no pages left to fill in that journal, but it is Christmas Eve, and I want to write to you again. In the almost three years since I last wrote in that book, I have written plenty for other people about you, about Rett, about daily life and endless challenges. A lot of the time, it’s not good. Much of the time, it’s about lost hopes and dreams, things that have not happened or things I wish could. It’s been about battles, losses, things unlearned and things out of reach. But this is not about those things. This is about things learned, things grasped, things gained. Things found and things created . This is not about Rett Syndrome, this is about you, my Hannah, and how proud I am to be your mum.

A few days ago, I stood in a room at the wedding reception of two remarkable people whom I would almost certainly never have met had it not been for you. One of whom was one of the very first people to come into our ‘special needs’ lives, long before diagnosis, and for you it was love at first sight. You still fold into giggles when she’s in the room and have difficulty remembering to breathe through your all-consuming smile whenever she’s around. She loves you right back. The other, with whom you also share a love at first sight bond, now sees you every day in your new school, where you share a classroom with their son. Together, they rank amongst your most loved and my most respected people. It was a genuine privilege to share their wedding day.

I looked around the room at them and at their guests, and realised that these people, all remarkable, are part of my life because of you. Most of them either work with, parent, (or both) children with special needs. Most of them ‘get it’. They are people with whom I may have nothing else in common, yet that one connection runs deeper and pulls us closer than innumerable other common factors could. It’s humbling to realise that you have brought us together, that I am dancing to S Club 7 and posing in a photo booth with some of the best people I have ever known, with people I respect and trust completely, because of you. Not just because they, like me, have a child with special needs of one kind or another, but because they, like me, love you.

It is even more humbling to know that your influence and inspiration is far from contained within this room. This moment of celebration comes at the end of a year in which you have inspired £10,000 worth of fundraising and innumerable new friendships, contacts and supporters: an 8 year old so moved by your story that she painted and sold 100 stunning canvases; a primary schools whose students, parents and staff staged event after event to raise awareness and funding; the third annual event hosted by a renowned hypnotherapist who, until he heard about you, had never heard of Rett Syndrome, but now supports us repeatedly and wholeheartedly; two secondary schools inspired by your story to choose Reverse Rett as their annual charity; old friends, new friends and friends of friends as far flung as South Africa hosting coffee mornings, quizzes and picnics with your smile as their backdrop. I could go on and on.

I stood in that room, thinking about all these people and about you and, I admit, felt overwhelmed. And then I looked at your dad. This man who is willing, enthusiastic even, about dancing opposite me. Who still, despite all that has happened and all that has not happened, honours his promise to tell me that he thinks I am beautiful and loves me every single day. Who carries you up the stairs every evening and down again every morning, even though his back is buckling. Who moves into your room almost every night when you wake, manic and shouting, and stays with you until you fall asleep. Who climbs onto an exercise bike in the living room every night and adds another 11kms to his final 4040km target, to raise funding for research for your future. I look at him and wonder, would I ever have known the infinite depths of his strength and courage and gentleness, had it not been for you? Would I ever have seen him the way I do had I not seen him look at you the way he does? Would I have known what he, and I, and we, were capable of?

When I got home, I crept upstairs to look at your sleeping brothers. The ones who, although younger than you, look after you and look out for you like older brothers protect their little sis. The ones who read stories to you, who wish you a ‘lovely day’ as you head off to school, who save things to show you and share with you when you get home again, who call ‘mummy, look!’ excitedly when you walk across the room or point or make a new sound, who say that they wish they could be superheroes so they could make you be able to talk to us.  I look at them and wonder, could we ever have taught them this kind of love without you? Could any classroom educate them better about empathy and understanding than you do? Would they be brothers like this if you weren’t the sister you are?

I could go on. Because it seems to me that there are very few people who meet you who do not love you and who are not touched and inspired by you. When I started writing that journal, eight years ago, I had dreams and hopes for my daughter, as all expectant parents do. When you were diagnosed, it felt like so many of those hopes and dreams were crushed. You might never read a book, sing a song, have a relationship, become a mother, travel the world, make your own choices. And I’m not for one second saying that any of the above makes up for the loss of those hopes; I still want all of those things for you, I still want you to be free and to be released from Rett Syndrome. None of these things means I hate Rett syndrome any less.  But one of the hopes I had for you back then is a hope that you have already fulfilled tenfold: you have made me proud. In ways and in measure I could not have imagined back then. I hoped also that you would love, and be loved. Little girl, you love fiercely and freely, with every fibre of your being, shining through your eyes and your infectious smile; and really, I do not think you could possibly be more loved than you are. After all, what’s not to love?

  When I flick back through that journal, I lose count of how many times I apologised for being ‘schmaltzy’ in my writing, or how many times I followed that apology with yet another outpouring of, well, schmaltz. I would apologise for this too, except that it is Christmas, the season of schmaltz, so in true Christmas spirit, I end on a quote, with a slight twist. The saying goes ‘I thought I would have to teach my daughter about the world, turns out I have to teach the world about her’. This has been true enough in the past four years, but it is also true to add that it turns out that my daughter has had, and I suspect always will have, to teach me. So, Merry Christmas, from a very proud and humbled mum, to the best teacher I’ve ever had. My Hannah.

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