Life in Lockdown

I was reluctant to write this. In these turbulent times, when so many are dealing with grief, loss, despair and devastation, the story of my family doesn’t seem particularly significant.

But in recent days, as there has been an increasing focus on those with learning disabilities in the media, as I’ve spoken with numerous other struggling parents and as I’ve watched my own daughter’s condition worsen, reluctance has turned to resolve.

The story of my family is the story of many families of a child with complex needs. Our 14-year-old daughter, the eldest of our four small people, has Rett Syndrome. Diagnosed aged 2 and now nearly 14, she is non-verbal, almost non-mobile, dyspraxic, epileptic and entirely dependent on others (right now, us) for every daily need.

In ‘normal’ life, she thrives at school. She is sociable and almost entirely motivated by people. Not only does school provide the daily specialist support she requires for her physical well-being (Physios, OTs, SLTs) it also provides the social environment which is so critical to her mental well-being. She craves and requires a huge level of social interaction and, despite having provided her with three little brothers and two cats, life in lockdown simply doesn’t cut it.

And not in the sense that she’s a bit bored and might have fallen behind ‘expected standards’ by the time school resumes. In the sense that she is physically and mentally suffering.

During the first lockdown her mobility deteriorated significantly. In the few autumn weeks back at school some of that was regained with daily physio input and a level of expertise/attention which we simply cannot replicate at home. But now two months back into shielding and she is reluctant to even weight-bear. At 65 kilos against my 50 and requiring every physical activity to be done for her, this is ‘challenging’.

Challenging, but not as heart-breaking as watching her withdraw into herself, lacking the social interactions she craves; as terrifying as seeing her seizures worsen, fuelled by deepening anxiety; as crushing as realising that that curve in her spine is undeniably increasing; as depressing as watching her sleep away hours of the day, exhausted by seizures and anaesthetised by the monotony of lockdown.

Do I worry about my sons falling behind in Maths? Not so much.

Yet whilst the cost of neurotypical children missing school has been a consistent feature of the daily briefings and lockdown ‘road maps’, the cost for vulnerable children, for whom school is so much more than fractions and digraphs, doesn’t seem to have been being counted at all.

Nor indeed has the cost to their families: parents who have necessarily become 24/7 carers, desperately trying to fill the gaps of those therapists, teachers, TAs, school nurses and peer groups who are so critical to their child’s well-being; parents who are juggling home-working, home-schooling, full-time care and permanent guilt (it is impossible to do any of it well enough); siblings who have shouldered more than most – helping at home, completing their schoolwork, witnessing their brother/sister’s deterioration and their parents’ frustrated exhaustion.

But that’s okay, right, because we (and they) are used to it? Used to just getting on with it, to fighting for our children’s basic rights, to provision and services being cut, to falling through the cracks. Perhaps, arguably, ironically, we are therefore better equipped than most to deal with the pandemic, accustomed as we are to protecting our kids fiercely, to monitoring symptoms incessantly, to disrupted days, sleepless nights, non-existent social lives and, most of all, living in a state of perpetual fear. We are used to paddling furiously and invisibly under water to keep afloat.

We are also, admittedly, already fairly well-versed in the ‘positives’: the taking nothing for granted, the celebrating small moments and days survived; the holding on to what we love whilst we have it. These Facebook memes and Instagram philosophies have been written into our muscle memory for years; we’ve learned them the hard way.

But this is not about banana-bread-bonding and woodland-walk-wisdom. Yes, we’ve baked and walked and played and shared and made memories together, like so many families have.

But we have also seen three small boys watch wide-eyed and trembling as their sister’s seizures turn her lips blue.

We have discussed scoliosis surgery, seizure meds, fragile bone infusions and irregular heartbeats via video calls, all to the background of fraction lessons, toddler tantrums and work deadlines.

I have, for the first time since the morning after Hannah was diagnosed, felt like I didn’t want to face the day.

We have fought to have her correctly ‘coded’ as having a learning disability, so that when the vaccine becomes available to children, she is given higher priority than a healthy, neurotypical teenager. Because even on her very best day, she can’t breathe properly.

I have written a letter informing any doctor making decisions about my daughter’s care, should she contract Covid19, that she is not DNR and that on no account would we sign a DNR if asked to. An evidence-based argument for why my 14-year-old, who has an infectious giggle and a wicked sense of humour, should have as much right to a ventilator as anyone else. An account of why her life is worth saving.

No parent should need to write a letter like this. I am grateful that we haven’t had to use ours yet and hope we never do. But the act of writing it alone breaks a little piece of you which no amount of baking or walking or board-game-playing can fix.

We’re all struggling. But to quote one Instagram philosophy, ‘we’re all in the same storm; we’re not all in the same boat.’ If we survive the storm in-tact we can count ourselves amongst the incredibly fortunate, yet there will inevitably be damage that can’t be undone.


For children like Hannah, skills that are easily lost are hard fought back. Their deterioration may be temporary, but it may not. The emotional impact on children who have watched their siblings’ struggle may be overridden, but it may not. The strain and exhaustion for families like ours may be reparable, but it may not. Even if/when the world returns to ‘normality’, our children’s physical and mental well-being may turn out to be collateral damage, leaving us paddling more furiously and desperately (although just as invisibly) than ever.

A little challenge part two

In previous years, the 5×50 Challenge (5kms a day for 50 consecutive days) has been difficult to fit in to everyday life: squeezing it in around school-runs and meetings, appointments and work – all the usual busy-ness which comes with four young children and a job. But at the same time, it has provided some sanctuary: 45 minutes to myself, an excuse/permission to simply walk out the front door and get some rare ‘head space’ or ‘me-time’.

This year, it’s been back-to-front. Fitting it in has been easier: it’s still been squeezed in-between home-schooling, work and all the demands of having those four young children at home all the time, but essentially I’ve been able to choose when to jump on the exercise bike (thank you Roosha!) and start pedalling.

The head space, on the other hand, has been non-existent. From the saddle I have explained fractions, proof-read reports, overseen play, mediated fights, directed performances and negotiated deals. My music choices have been replaced with those that keep Hannah happy (thank you Olly!), whilst my own stream-of-consciousness has been replaced by a toddler’s stream-of-questions . . .

Which is, of course, all fine. In the context of the current crisis, the absence of a little ‘head-space’ is a negligible problem, and I have genuinely been daily grateful to be able to stay at home, work and shield my children as fully as possible whilst continuing the challenge.

As I have cycled I have been mindful (as far as mindfulness has been possible) about those who have not been afforded such a choice: those who are still going out to work, those who are necessarily living apart from their own children to keep them safe; those who are in isolation alone; those who are in isolation with danger. We may all be in the same sea but our boats are very different and it is hard (although crucial to try) to imagine what it must feel like to be struggling to stay afloat, or worse.

I have also thought about Hannah. Since the first time I did the 5×50 Challenge, five years ago, she has lost almost all of her mobility, her hand function has deteriorated, her breathing has worsened and her medications have increased. On top of all that, lockdown is now damaging to her physical and mental well-being, she is understandably bored and frustrated and she is most definitely letting us know!

This version of Hannah is not one which most of you will ever see. You probably won’t believe that she is capable of an ongoing scream which reverberates through my head, of a persistent loud, low moan which prevents clear thought, or of tearful sobbing which makes my heart ache.

To some extent, these sounds have become the soundtrack to our lockdown  and they make it hard to not feel like we are failing. In fairness, we are. Only twice have we tried to get her into the standing frame, we make her walk too infrequently, her eye-gaze device has only come out of its bag once, updating her visual timetable keeps getting pushed to the bottom of the ‘to-do’ list and yes, I too often placate her frustrated screaming with a bag of crisps.

On the other hand (thank goodness there is an ‘other hand’!) her trademark mischievous giggle has been part of our soundtrack too – the version of Hannah you always see. She has giggled at her brothers’ crazy games and her cat’s mad moments, at foam-fights and Zoom-calls, at paddling pools and painting, at naked-toddler-trampolining and bad-Dad-dancing, at screen-sharing and photo-taking and quiz-failing and lip-syncing and at lots and lots and lots of cycling.

The 5×50 Challenge ended yesterday. Today is the first day since March 22^nd when I don’t HAVE to get those 5kms done. But Hannah sits next to me when I cycle and she smiles. So when I’m done typing this, I’m putting Olly Murs on loud, bracing myself for some intense toddler-questioning, remembering how fortunate I am to be in this particular boat today, and getting on that bike.

 

https://www.justgiving.com/fundraising/5kEveryDay4Hannah

 

 

 

 

A little challenge

It’s the first day of my 5×50 Challenge: Mothers’ Day, thirteen years and four days since Hannah was born, and day 6 of family self-isolation.

To say it’s not quite how I had expected this team challenge to start would be an under-statement.

I knew, of course, that fitting in 5kms a day every day for 50 consecutive days would be tough. I knew that finding the time and the energy and the motivation would be challenging, that juggling it with work and school-runs and homework and childcare would be tricky. It’s not called a ‘challenge’ for nothing, right?

But now here we are, and the 5kms must be done in-between home-schooling, home-working, incessant-cleaning, hand-washing, toddler-entertaining, physio-delivering, more hand-washing, worry-soothing, eye-gaze-teaching, quarrel-mediating, snack-providing, more hand-washing, pharmacy-chasing, delivery-slot-hunting, temperature-taking and yet more hand-washing.

I couldn’t possibly have known that each venture out the door would be done with a deep breath and an anxiety about what I might bring back in; that routes would be planned according to the least possible interaction with other humans; that outdoor clothes and phones and hands would be necessarily scrubbed on re-entry; that worrying about how to fit in a 5kms run would become the most insigificant of my worries.

And yet I also couldn’t have realised how important those 5k would be: how needed the fresh air, the breathing-space, the calm, the exercise would become. I couldn’t possibly have guessed that my little personal challenge would become such a lifeline within the context of the immense, global one.

Hannah was born on Mothers’ Day, 13 years ago: unquestionably the best mothers’ day gift I have ever (and will ever) receive. She made me a mum; she started me on the journey of motherhood and the most life-changing, important, privileged journey I will ever take.

Before that day, I couldn’t possibly have imagined what motherhood would bring. I had no idea about the challenges in-store, no clue about what I would have to cope with or realisation of what I would be capable of coping with. And that’s even without Rett Syndrome in the equation.

I knew of course that parenting would be tough: that it would come without a guidebook, with highs and lows, with fears and frustrations, with successes and failures, with guesswork and uncertainty.

I couldn’t possibly have known that it would come with devastating diagnoses, with medications and missed milestones, with seizures and scoliosis, with hospitals and hoists, with wet-rooms and wheelchairs, with longed-for voices and goodnight kisses which plead ‘please wake up tomorrow’.

And yet I also had no idea, quite simply, how much I could love.

Today, that love and the fear that comes with it, are overwhelming. Honestly, I am terrified. Terrified that she will catch this thing and that it will take her from me. As I type and watch her out the window, giggling at the antics of her silly brothers and enjoying the wind in her face, I know with absolute certainty that the beating heart of me would be taken too. It’s not a thought I can dwell on, it’s not a reality I could bear.

My very first 5k is yet to come: later this afternoon, when they are all tired and ready (on the toddler’s insistence) to watch Ice Age 3 for the 6th time in four days, I will sneak out. I will take hand gel and avoid people and scrub on re-entry. I will try to not let my mind wander to the ‘what if’ thoughts but will focus on the daffodils and the blossom and signs of new-life emerging, be grateful for the most incredible mothers’ day gift ever and, most of all, think with awe and gratitude of those who today continue the almighty global challenge of keeping hearts beating.

 

If you would like to join the 5×50 challenge you can find out more and register here

If you would like to sponsor Beth or any member of the team, you can do so here.

In the spaces in-between

A couple of weeks ago, at a staff planning meeting in Manchester, Rachael mentioned Valentine’s Day approaching and ‘how about somebody writing something about romance as Rett parents?’

Foolishly, I laughed, made a flippant comment along the lines of ‘what romance?’ and found I had inadvertently nominated myself as the author . . .

First thoughts: my husband is unlikely to be thrilled. As it goes, despite my initial reaction, he’s a pretty romantic type, and it would be to do him an injustice to suggest that romance is dead in our house.

Second thoughts: what is ‘romance’ anyway, how do we know when it’s dead, dozing or simply re-defined?

The OED defines romance as ‘a feeling of excitement or mystery associated with love.’

When you’re changing bedding (again) at 2am, whilst your other half showers down your trembling 12-year old, before you both re-dress her and then head to separate beds (again) where you will soothe the stirring toddler, whilst he stays to calm the 12 -year old back to sleep, knowing that in 3.5 hours the alarm will ring and the hoisting, cleaning, dressing, medicating and spoon-feeding will begin again, ‘excitement’ and ‘mystery’ are hardly the primary emotions.

When conversations typically revolve around the current status of your child’s bowel movements (who knew these could be a source of such elation and/or desperation), or the latest frustrating development in the fight for her medication, or the necessary amendments to her EHCP, or which WAV will best suit her needs now that mobility is all but gone, it is hard for romance to find a gap to squeeze through.

When every outing, every activity requires careful advance planning: is the route wheelchair accessible? Will there be an appropriate changing place? Will she be able to join in? Will those around us be understanding of uncontrollable shouting?

Such pre-analysis leaves little room for any element of ‘mystery’ or ‘excitement’, and in the absence of any ‘babysitter’ who can be expected to cope with moving and changing a 65-kilo non-mobile dyspraxic child, a spontaneous ‘date night’ is nigh on impossible. Most of the time, the logistics and arrangements required to both go out simultaneously just aren’t worth it.

So where does that leave the romance?

To paraphrase one of the best romantic films I know, I think it leaves it, actually, all around.

Not in the big, wild, demonstrative gestures of days gone by, but in the spaces in-between. In the exchanged 2am ‘I’m glad you’re here’ glances; in the favourite meal shopped for and prepared; in whispered requests to the kids to ‘just let daddy sleep a bit longer’ on Saturdays; in the late night washing up so there’s one less thing for mummy to do in the morning; in the hospital appointment ‘it’ll be alright’ hand squeeze; in the ‘our song’ sneaked into the kids’ Alexa requests; and in the silent mutual agreement that you’d really rather watch Netflix together on the sofa on a Saturday night than do pretty much anything else.

It might not exactly fit the OED definition, it might not be wildly exciting or mysterious or anything close to a Charlotte Bronte novel, but it’s real. And it counts.

Because what’s more romantic than doing life, with all its extraordinary and its extra-ordinary moments, together.

Just another day

Today is not a remarkable day. It is a day like most others and like millions of other
families’ days. It will involve teeth-brushing and lunch-making and bag-packing and bag-unpacking and dress-up-day-panicking and form-filling and sock-finding and train-catching and guinea-pig-returning (?) and cat-feeding and laundry-hanging and email-sending and phone-call-making and nappy-changing and list-writing and bin-emptying and dish-washing and spillage-cleaning and school-gate-chatting and homework-nagging and story-reading and worry-soothing and quarrel-calming and tangle-combing and hug-giving and screen-time-negotiating and freezer-raiding and news-exchanging and, crucially, hopefully, tea-drinking. Just another day.

It’s true, there are some additions to our day which are less common, but they are neither unique nor, anymore, extraordinary to us. Technically, the day started at 3.30am when Hannah woke, needed changing, and didn’t resettle. Before 7.55am, a hoist, a sling, pads, a caliper, a wheelchair and a syringe to administer 22.5mls of two different medications had been used. Breakfast had been spoon-fed in-between boot-lacing, coat-maneouvring and hair-wrestling, ahead of the 8am wheelchair transfer and minibus arrival.

Between 8am and 3.15pm, the day follows a relatively ‘normal’ track: 3 boys (and guinea-pigs) delivered to school and childminder, work tackled, emails sent, calls made, lists written, albeit with Hannah and Rett Syndrome at the centre of it all.

Later, the after-school hours will be standard: the boys home first, I’ll empty school bags, read letters, check spellings, listen to their days, provide snacks, referee football, squeeze in more work, prepare dinner. Hannah comes next, transferred from WAV to house, from wheelchair to sofa, caliper removed, Alexa instructed to ‘play Olly Murs’ to stave off the daily homecoming meltdown, brothers employed to provide entertainment and snacks.

We’ll eat stir fry at the table, sharing news, feeding Hannah, occasionally urging her to ‘calm down’, ‘chew properly’ and ‘breathe’. We’ll clear and clean up, administer another 22.5mls of medication, feed the cat, ask Alexa to ‘play more Olly Murs’ casually mention ‘homework’ to boys with selective hearing, and, hopefully, find time for that tea-drinking.

At shower-time, a wheelchair, shower chair, wet room and a good deal of physical strength will come into play, but my nearly 13-year old deserves more dignity than would be afforded to her if this routine were to be fully described. The hoist will help us get her to bed, where, if we’re lucky and she’s not too tired, she’ll press her switch to tell us the news from her day. A glimpse of school-life which she cannot otherwise articulate.

The room will empty and I will lie down next to her to read a story. Maybe the age appropriate Jacqueline Wilson we bought her for Christmas, but more likely the familiar, somewhat battered ‘Charlie and Lola’ to which she eye-points. She’ll be asleep within two pages: maybe for the rest of the night, maybe for a couple of hours, maybe until 3.30am. She will most likely need to be changed during the night, whether she is awake or not.

We will move on to other bedtimes – listening to reading, being listened to, hunting for comfort blankets, timing teeth-brushing, soothing worries, emphasising the ten- minutes-only ‘chat time’ before lights out. Later, we will prepare for another day – make packed lunches, add to lists, review the necessary tweaks to tomorrow’s routine, ensure swimming kits are ready, home-school books filled in, switch news re-recorded.

We will go through innumerable unremarkable motions, passing each other repeatedly, exchanging anecdotes from the day, remarking with despair on the latest news, updating each other on upcoming appointments. We will stop for a moment, share a hug, a sigh, a silent acknowledgment of the day it is, and then move on.

Because beneath the unremarkable motions of the day, there is a memory – a little closer to the surface than usual – of this day ten years ago; a day which divided our lives into two distinct parts: pre and post-diagnosis. The day on which we heard two words we had never heard before but which have become so intrinsically embedded in our lives since.

It’s been an eventful decade: we’ve had three more children, moved house twice, changed career once (each), acquired a cat and, devastatingly, lost my wonderful Dad.

In terms of Hannah’s diagnosis, the decade has been relentless. It has brought a gradual loss of mobility and hand function, complete loss of speech, further diagnoses of epilepsy, scoliosis, osteoporosis and borderline long QT Syndrome, increasing levels of necessary equipment and adaptations and decreasing levels of certainty about what tomorrow, let alone the next ten years, may bring.

It’s been a decade of battles and challenges – some sought after and some forced upon us; some won, some lost.

It’s been a decade of wonder: of getting to know four amazing human beings, of watching them get to know each other and to love each other fiercely; of discovering what extreme goodness people are capable of and the real worth of true friends; of finding out what we are capable of and the power of parental love; of learning that the darkness which fell upon us ten years ago is no match for the light which four little lives shine every day.

In human terms, it’s been unremarkable, like this ‘anniversary’ day itself. There have been births, deaths, laughs, tears, challenges, achievements, highs, lows, and lots and lots of in-betweens.

Just another ten years, just another day.

But what of the next ten? What will they bring and where will they take us?

Alongside the resurfaced memory, today, is another thought, also edging slightly closer to the surface as each year passes, just that bit harder to ignore or to push away: does Hannah have another ten years to wait?

When we are young, we dream of and aim for extraordinary lives, I think. My 17 -year old self may have found little excitement in the thought of a future filled with the mundane and the ordinary. But now, with the exception of one extraordinary scientific breakthrough, the ‘ordinary’ is what my dreams are made of.

If, in ten years’ time, my little girl is a happy 22 year old woman, my sons are safe and healthy, good young men, if we are still sharing our days around a dinner table, lamenting the latest news, teasing, embarrassing and comforting each other, disagreeing over music choices, deliberating over life choices and exchanging glances which say ‘I’m glad you’re here’, then that will be absolutely remarkable enough for me.

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.

*’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

 

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.

 

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.

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.

Unfinished Thoughts

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.

 

 

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.