Don’t fight it

If there’s one thing I’m learning from being a parent, from being a special needs parent, from being a member of SWAN, from doing the Partners in Policymaking course … in fact from all the paths that life has sent me down since becoming a mother, it’s that sometimes you’ve just got to stop fighting and roll with it.

Since January I have been trying – and mostly failing – to get to a Monday morning 6am pilates class that I signed up for. And beating myself up each week for hitting the snooze button instead of jumping out of bed and out into the darkness. By the end of the term I have finally accepted that I am just never going to be one of those people who can get up an hour earlier than the rest of the household and kick-start their day productively. I’m always going to function better late at night than early in the morning. So I’ve decided to stop fighting it, and signed up for a much more manageable 10am Wednesday class instead.

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Star of the week for super-switching!

Since forever, we have been trying to teach Benjamin to communicate with a simple switch. A big, colourful button that he can push to activate a toy, or sound a noise – anything that means he plays an active part in what’s going on around him. The problem is he can’t really raise or lower his hands in a controlled way (yet), and he also cannot see his own hands so has little awareness of what they are doing. He is, however, now pretty awesome at moving his head from side to side. So his OT had the idea of moving the switch up to beside his head (Why didn’t we think of that before?). Working with what Benjamin can do, rather than frustrating everyone pushing on with something he can’t, means he is now making leaps and bounds in switching and will be able to work towards more complex switch-based communication.

For the first few months (years?) after Benjamin was born I couldn’t believe there was no obvious explanation for his needs. I spent hours googling combinations of symptoms, following up references, emailing the names of potential genetic mutations to his geneticist. I didn’t want to be the only parent who couldn’t answer the question “What condition does your child have?” with a simple phrase or a tick in a box. Now, of course, I know we are not the only ones, not by a long chalk! In fact, 6000 children are born each year in the UK with a Syndrome Without A Name. Now that we are members of SWAN UK – the charity that supports families of children with undiagnosed conditions – it matters less whether we ever find an answer or not, because we are surrounded by people who “get it” anyway.

Of course, there are still battles to be won and changes to be fought for. Having a disabled child is hard. Having a disabled child in the UK in the age of austerity means every ounce of support has to be contested. Having an undiagnosed child makes it harder to access the benefits system, harder to make sure Benjamin receives appropriate medical treatment, harder to get the support he needs to attend school safely, harder to arrange travel insurance, harder to access childcare and therefore to work, and so on … But all these battles are made easier because we have a tribe now. We have access to a UK-wide network of other parents who have been there before us, who have the answers to some of our questions, who can tell us which battles are worth fighting and which are just a waste of precious energy, who can provide a voice of reason in the middle of the night, and a much-needed boost when the struggles seem never-ending.

In the beginning, I wasn’t sure whether I needed a support group. I railed against the idea of sharing my child’s medical details with an online community of people I had never met. I would fight my own battles; I didn’t need any help. Now I realise that it’s not all about the fighting. It’s about sharing the highs and the lows, having a laugh, making friends, sharing a love story. Like a pride of lions, SWAN parents work together, look after each other, and allow each other time to rest. We’ve got each other’s backs. We’re #ROARsome. This Undiagnosed Children’s Day (Friday 26th April 2019), I’m proud to have a SWAN, happy to roll with his needs, and grateful to be surrounded by lions.

We found love … So don’t fight it … Life is a rollercoaster … Just gotta ride it (Ronan Keating, Life is a Roller Coaster)

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My own little pride of #ROARsome SWAN lions

#UCD2019 #ROARsome

You can join SWAN UK at https://www.undiagnosed.org.uk/join/ and support them at https://www.undiagnosed.org.uk/donate/. Please share this to help us to reach the thousands of families with undiagnosed children who haven’t yet heard of SWAN UK.

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Too many futures

Why are the parents of disabled children always so tired? There are all the obvious reasons of course: so little sleep, so much paperwork; too many hospital stays, too much wine, cake, and coffee… but there’s one reason that I haven’t seen discussed so often: we spend so much time thinking about the future.

How often do you think about the future? About the trajectory life is likely to take? Do you feel prepared? Perhaps you have plans to travel the world, take up a hobby, or give something back by volunteering? Maybe you worry about how things will turn out, or maybe you live in the moment. We’re all aware that life often doesn’t turn out as we expect. That even the best laid plans don’t prepare us for what lies ahead. That’s why we make preparations that cover a wide range of scenarios: we put aside savings, start a pension, make a will, take photos, get vaccinated, … Preparing for the future is tiring. Worrying about the future is tiring. But hopefully once we’ve prepared a little, we can stop worrying quite so much, and get on with enjoying life in the moment.

But what if there are several likely scenarios that all require very different preparations? Physically, emotionally, financially, …? Preparing for, and worrying about, multiple, wildly differing futures is exhausting. That’s what many parents like us have to do. We have to think about too many futures.

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There’s the one where you continue caring for your child as they grow up and grow old. In this future, you have to prepare your child and yourself for a long term stay in the big, wide world. You have to make sure your child gets all the therapy, does all the exercises, no matter how unpleasant, that will set their body and mind up for the healthiest adulthood. You have to consider the surgeries that may benefit them longer term, no matter how risky and painful in the present. You may have to prioritise postural maintenance over cosy cuddles, practice and practice and practice over rest and relaxation.

You have to plan and prepare for transitions, for secondary school, for adult services, for PIP assessments. You have to ensure your house is adapted to meet your child’s needs as they get larger and heavier. You likely have to find funding for a proportion of these adaptations, particularly if you want them to be suitable for the rest of your family as well. You may try to see as much of the world as you can while your child is little, while you can manage without a hoist and a changing bed, before the world starts closing in around us.

You have to prepare yourself financially, for the fact that you may never again be able to work full-time ,or at all. You have to look after your own physical and mental health, for the long term. You try to make time to stay physically fit and strong. You may need to seek out, and fight for, respite options before you want or need them, because you know you’ll will need them, and accessing support can take years, if you qualify at all.

You start battles for the things you know your child and others like them will need in the future – accessible buildings, changing places toilets, better public transport, parking spaces. You fight the ever harder battles against cuts, austerity, stigma, ignorance, and hate.

You worry about having to care for both your parents and your child. You worry for your child’s siblings, whether they will be forced to compromise their own future plans. You fear for the future of your relationship with your partner. You fear becoming more and more isolated within your community. Yet you hope that this future comes true.

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Then, there’s the one where you lose your child too soon. You try not to think about this, but sometimes it pops into your head and catches you unawares. And you know you have to prepare for this scenario too: you have to focus on making memories fast. On going places, taking photos, snatching cuddles. On making more of an effort to see friends and family. You skip respite sessions because you don’t dare lose a minute together. You struggle on without the adaptations you need because later they will just be painful reminders. You neglect your own health – there’ll be plenty of time for that later.

But at the same time you have to prepare for life after. You keep your career going because you’ll need it. You try to subtly prepare your child’s siblings for the loss, as if anyone could ever be prepared. You wonder how you yourself will cope with the loss, with the lack of purpose, when your whole life has centred around being a carer. You think about end-of-life care. You make a list of all the things that will need to be done – notify the DWP, hand back the Motability car, cancel the endless deliveries of syringes and feeds, … You plan funerals in your head. You probably think about funerals too much.

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Scariest of all, there’s the one where your child outlives you. I think many of us bury our heads in the sand when it comes to this one. The future is just too grim, the outlook too bleak. There are too many horror-stories and not enough examples of best practice. But, prepare for it you must. Your child’s siblings mustn’t feel obliged to take on a parents’ role caring for him; can you make sure everything is in place so they don’t have to?

There are the complicated financial and legal preparations: wills, trust funds, guardianship, and power of attorney. There are practical arrangements. Everything must be documented: care plans, therapy schedules, medications, likes and dislikes, the intricacies of communication and how your child shows discomfort, pain, and distress. You can write care plans and make digital passports but what if you forget something? How to give NP-suction through his twisted airway … how he says hello … how to tell if he’s tired … how to pass on the things we know only by instinct and intuition that can’t be written or said …?

Without you, who will make sure your child is not only fed and clothed and medicated, but happy, loved, and befriended? Who will make sure he has contact with his friends, remains known in his community? You need to do as much as you can now to build relationships, to help him make friends with his neurotypical peers, to make sure he’s widely known in the community so that there are as many folks as possible looking out for him.

And, you have to prepare for all these futures now, at the same time, together, because failing to prepare for any of them is just too risky. Or at least you should prepare for them, and if you don’t feel adequately prepared you worry and stress all the more. You may even fear them. What if you fear all of them? What if you feel guilty for hoping one of them comes true?

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But there is a fourth future, one I until recently had no concept of (thanks, Partners in Policymaking). One where your child grows and thrives, makes friends, and is known, loved, and valued in your community. Where it’s no longer all on you. Where your child teaches you and all those around him; where your community becomes a better place because of what he teaches. Where his siblings become not duty-bound carers but gentle warriors. Where people you hardly know surprise you by independently making changes towards inclusion and accessibility. Where your son brings people into your lives that you would otherwise never have met but who become your best friends and your closest allies. Where you learn new skills, make new priorities, and realise potential you never knew you had. There are still preparations to be made, of course, but this is a future filled with dreams not fears. Where, whether your own child lives or dies, together we build a better world for everyone.

Daring to dream

For the past couple of weeks, Benjamin has been in the habit of waking in the early hours of the morning, hot, agitated, dystonic, twitchy. I’ve tried everything I can think of to relieve his discomfort: chest physio, pain relief, muscle relaxants, suctioning, repositioning. I’ve checked his heart rate, breathing rate, oxygen saturations and temperature. I’ve changed his pad, cuddled him and stroked his hair, massaged his tummy and exercised his legs, we’ve listened to music and we’ve lain and watched his starlight projector together. I’ve had to be nurse, doctor, and therapist: diagnosing what’s wrong, making the right clinical decisions, and guessing what will work. Each time he falls back to sleep hours later, leaving me none the wiser.

I wrote once, towards the start of this journey, that whilst I knew my child would be disabled, I didn’t realise they would be sick. That seems so naïve now, for in many ways sickness has taken over our lives. Benjamin is on a dozen regular medications; he needs twice daily chest physio and antibiotic nebulisers; he’s fed a complex cocktail of chemical nutrients through a tube; his temperature and heart rate need regular monitoring; and managing his bowel movements is practically a full-time job! As we lurch from clinic appointment to therapy session to full-on critical care stay and back again, our lives are dominated by Benjamin’s health.

Does this mean we have succumbed to the dreaded ‘medical model’ of disability? Where the disabled are considered to have something ‘wrong’ with them – something to be cured, treated, isolated, stigmatised, or even locked away?

With some disabilities it’s relatively easy to see a dichotomy between the medical and the social, but with children like Benjamin – with complex medical needs on top of, and largely due to, their underlying neurological differences – it’s more difficult to make clear distinctions. Whilst outwardly championing the social model, I’ve slowly fallen into the trap of seeing my son more as a patient than as a child.

It’s abundantly clear in his day to day life. While we’ve always been flexible, even spontaneous, with the girls, Benjamin is pretty much always in bed at the same time, hooked up to his feed pump, whatever else is going on around him. When we go away anywhere, while his sisters are free to run off and explore the minute we arrive, I shunt Benjamin off immediately to start setting up his positioning systems and field hospital, making sure all the equipment and drugs are in place so that his routine can run as smoothly as at home. While the girls are encouraged to run in the wind and jump in the puddles, some days I daren’t take him out of the house at all if the weather is too hostile.

And, while that means Benjamin stays as healthy as possible, it also means he misses out. He’s slowly but surely becoming relegated to a second-class member of the family, strapped to his profiling bed, whilst the rest of us carry on the business of living in the next room. Yes, we do his morning chest physio and nebulisers at the kitchen table alongside the girls eating their breakfast – but one day soon the need for efficiency and to minimise time-consuming hoist transfers will probably necessitate getting him ready in his bedroom. Yes, this year we managed to get all three children into our bed to open their Christmas stockings together – but soon the time will come when we simply can’t get Benjamin safely upstairs. Yes, his little sister likes to climb onto his bed in the mornings as he’s getting ready for the day, but how long before she tires of playing with his teddies and chatting with the carer?

And when Benjamin misses out, we all miss out. When Benjamin is excluded from family life, we are no longer a family.

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This isn’t easy stuff to admit, not least because it makes the future look so bleak. If even I, his mum, am starting to relegate Benjamin to a patient rather than a son and a sibling, to a list of medical procedures rather than a child who needs to learn, grow, interact, love, and be loved, what hope is there for his future care providers after I am gone?

Thank goodness, then, for his school! His amazing teacher and support assistants treat Benjamin like any other child – he shares his news every morning; he studies the same topics as everybody else, in whatever way works best for him; he is able to choose toys to play with; he spends time with his friends; he gets homework; he is not allowed to shirk PE! Under their inspiration, Benjamin is thriving, growing, and a fully-participating member of his class.

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Class ceilidh, Benji-style

And thank goodness for Partners in Policymaking, the internationally-recognised course for disabled self-advocates and parents of disabled children. When I joined the course late last year, I was all fired up to work towards Partners’ aims of inclusion and social justice; of driving change at national and local levels through policy and practice. But I wasn’t expecting it to work change in me. However, just three sessions in, already its gentle yet powerful message is transforming my vision (if I even had one) of life for Benjamin and our family.

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Most importantly, Partners is giving me permission to dream. With a child like Benjamin it’s so tempting, and understandable, to live day by day, hour by hour. After all, we don’t know how long we will have him for so let’s make the most of every moment. Why waste time looking forward or back? And yet… what do we have to lose by assuming that Benjamin does have a future? We have everything to gain by thinking about what we want that future to look like and working towards it right now.

I am learning to dream that Benjamin will be happy, will be able to communicate his needs, desires and opinions, will have friends, and will be known in his community. I want to identify his particular gifts and skills, and uncover his true character. He should be able spend time with his friends outside of school – just like his sisters do. Why shouldn’t he join Beavers or an after-school sports club, or do ballet?

I am starting to dream of a realistic plan for his long-term care that doesn’t compromise on Benjamin’s enjoyment of life and involvement with the community. I want us to spend time together as a family – for my children to be children, together; for the girls to be sisters, not carers; and for Benjamin to be a brother, not a burden, now and in the long term.

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I dream that we are able to be spontaneous, not constrained by Benjamin’s care needs. I want us to be able to make the most of the beautiful part of the world in which we live. We should be able to spend time together in the garden, to pop down to the harbour for an al fresco dinner at the pizza van, to play on the beach, to go on holiday.

In fact I have a list of – inspiring and desirable, but feasible and achievable – dreams nearly two pages long! But above all I dream that we can live an ordinary life.

It actually starts in those early hours of the morning, barefoot in my pyjamas, when the rest of the family are asleep. When it’s just Benjamin and I, and I am no longer torn between too many tasks, I realise that, first and foremost, he’s my child. When the hustle and bustle and the schedule and routine are stripped away and I’m just a mother responding to her little boy’s call. His need to be held, comforted, and listened to, just like any other child.

And, as I engage with him, I find a potential explanation for why Benjamin has been so upset recently. He has two wobbly teeth! A disconcerting and painful feeling for anyone, let alone a child as unprepared as Benji. I hadn’t been looking out for this, because the medical professionals had told us his small and under-developed skull would likely result in slower-than-average jaw and tooth development. But at just five years old, a good year earlier than his elder sister, he’s going to lose his first baby teeth already. My little boy really is growing up. He’s got a future to grow into, a future to dream for. Now I need to go out and make it happen.

Brave, bruised, and better for it

With apologies for the spoiler, I can hardly believe it went without a hitch.

Back in the depths of winter, when Benjamin’s health appeared relatively stable, we rashly booked ourselves a summer holiday, more than two hours drive from our local hospital. Twelve hours drive and sixteen hours ferry away from our local hospital. Abroad! During May and June, as he deteriorated, it looked as if we would have to cut our losses and claim on the travel insurance. But, with almost three consecutive weeks of reasonable health under our belt, I nervously started to pack, whilst simultaneously trying to keep everything low-key and last-minute to avoid getting anyone’s hopes up.

Mostly, that is, the hopes of my six-year-old who’s learning French at school and was desperate to show it off: “I can do all the shopping, Mummy, you can just relax.” Because that’s all you do on holiday, right? Shopping and relaxing. My own hopes weren’t really that high to begin with, what with the twelve hours of driving, six of them on the wrong side of the road, the horrendous thought of a sixteen-hour crossing of the North Sea, the likely infestation of mosquitoes since we were camping right by a lake, the high chance of sunstroke, frostbite, drowning, or lightning strike, and the lack of an en suite toilet.

It’s hard work preparing and packing to take a family of five on holiday. By the time I’d arranged passports, warning triangle, vehicle clean-air certification, breathalysers, head-lamp stickers, GB sticker, maps, travel sickness pills, first aid kit, two weeks supplies of milk, containers, giving sets, bile bags, medications, nappies, wet wipes, incontinence pads, nebuliser, suction machine, feed pump, spare feed pump, sats machine, thermometer, electrical adaptors, clothes for everyone, toys for everyone, bedtime stories, surprise activities to keep everyone amused on the journey, snacks, directions to every hospital between here and Le Mans, a French translation of Benjamin’s medical notes, insect repellent, sun cream, blankets, waterproofs, swimwear, and cuddly toys, I was seriously wondering if it was really all worth it.

It was so worth it.

For me, there was a lot riding on this. Following three years of in-out hospital admissions, disrupting the lifestyle and opportunities of Benjamin’s sisters, this was my first chance to prove that we can give them a semblance of a normal life. To answer the detractors who said we should abort Benjamin for the sake of the rest of the family. And those who said we’d never make it work with three children. To show that we can all – including Benjamin – have fun times and a decent quality of life. To show that our little family works, plays, and stays together. I was determined to make it work.

My aspirations were given a massive boost by the wonderful staff of the P&O Hull-Zeebrugge overnight ferry. All we had to do was pop our hazard-lights on, and we were directed to a parking space right by the lift, and met by a lovely lady who took charge of Benjamin, leaving us enough hands to manage the girls and the luggage. The same lady seemed to be on hand throughout the entire voyage, always keeping a friendly eye out to make sure we were staying safe and having fun.

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“Nice bed, Mummy, but where’s the boat?”

Our club-class cabin was amazing! A cold beer from the minibar helped my husband get over his initial panic that we had only three beds (I quickly pulled down the upper bunks that had been stowed against the wall, and the girls just as quickly clambered up and got into their pyjamas, so exciting was the prospect of a bunk at sea). Once we’d coaxed the girls back into their clothes we risked the terrifying prospect that is taking a wayward toddler out on deck, and watched the delights of Hull receding into the evening sun with a G&T before heading down for our all-you-can-eat buffet dinner (which in Jackie’s case consisted of rice, chips, naan bread, poppadum, a bread roll and a scoop of mashed potato – with ketchup, of course – just in case they don’t have carbs in France).

A full days’ drive down the motorway later (with copious stops for coffee, picnics, toilet trips and ice cream) and we arrived at Lac de Sillé, a forest campsite that somehow managed to be both on top of a hill and next to a beautiful lake. With the occasional exception (like our tent being on a wooden platform up some wooden steps, making it somewhat difficult to wheel Benjamin into it), the campsite setup also made life very easy. There were real beds, decent toilets and showers, a fridge, a pastry delivery every morning, a pizza van every evening, draft beer, and plenty of fun atmosphere thanks to the World Cup!

I’d love to say I’d planned it ‘just so,’ but it was pure luck that made it the perfect holiday for everyone. The site was so safe – and car-free – that the girls could have a real taste of freedom, pottering around the woods, building dens, playing tag in and out of the trees. Generally they played really nicely together, and even found novelty in helping with the washing up. They both got to stay up late enjoying the poolside World Cup parties, and as a consequence we mostly got a lie-in in the mornings.

Since we were in the right country at the right time, it would have been churlish to refuse my husband a day out at the Tour de France. And I got to visit local markets, photograph butterflies, and drink cheap wine to my heart’s content. Best of all, the lakeside ‘resort,’ about a mile’s walk away through the forest, had pedalos, ponies, pancakes, a little train and, for Benjy, a beach wheelchair! So many opportunities to spend ‘quality time’ with one another – in and out of the water. But most of the time, Jackie turned out to be right, was spent shopping. Particularly as the local supermarket contained possibly the most exciting invention of the century – an orange-squeezing, juice-making machine!

Of course there were moments of confusion – and not just involving the mythical motorway exit for the Le Mans by-pass. Caitlin had been so excited about going on a ferry – but once we were on board, the ferry was so big she couldn’t comprehend it and spent the entire journey asking plaintively “But where’s the boat?” There was the morning I got up last and emerged blearily to be informed excitedly, “We’re going to make bunting!” I somehow misheard. “You’re going to make pancakes?” Fortunately we had the ingredients for both bunting and pancakes. Win-win.

And of course it was hard to relax completely. What if Benjamin gets ill? Do we know how to call an ambulance, and how long would one take to come? Can we speak enough French to explain his condition and what he needs? What if some vital piece of equipment goes wrong, or we run out of milk or medications? It wasn’t until we were on the boat home that I really believed we might make it without a medical disaster.

And of course it was hard work. Constantly lifting a 25 kg boy and his 25 kg buggy in and out of the car, the tent, the back-breakingly low camp-bed, and the floor took its toll. Working through his morning and evening routines every day made me realise how much of the weight our wonderful carers take off back home. Remembering all his medications and equipment every time we went out, and working out how to use them away from our familiar set-up and in 30-degree heat, was mentally exhausting. It made me realise this is probably the last time we’ll be able to holiday like this – by next summer Benjamin will just be too heavy to manage without some concessions to accessibility. But, we are so lucky to have had such freedom for so long.

I was pushed way out of my comfort zone in many ways: keeping Benjamin safe in unfamiliar situations; speaking up to make my children’s needs understood – in French; driving a big car on the wrong side of the road; letting routines slip; letting things get dirty; using those hole-in-the-floor toilets! I learned that trying to economise on space by sharing a single tube of toothpaste is self-defeating. I learned that a car packed to the roof with milk and syringes on the way there = a car with plenty of space for nice French wine on the way home!

There was no infestation of mosquitoes. Nobody got (too) sunburnt, drowned, or was struck by lightning even in the dramatic thunderstorms we experienced for the first three days. It’s true there was no en suite toilet (at least, not until we got back on the ferry). But, we were blessed with totally awesome weather so we never had to traipse across the campsite in the rain. I know everywhere has had awesome weather this year, but still it felt like Someone was watching over us. When asked “Would you do it again then?” my answer has generally been, “Of course not, we’ve had all our luck now, something is bound to go wrong next time!” But maybe, maybe even if something does go wrong, I think we might just survive…

Graduation Day

Since when did nursery graduations become a thing? I’m sure I never had one, but last year my eldest daughter had two, complete with ribbon-tied certificates, gowns, mortar boards (long relegated to the bottom of the dressing-up box), and the obligatory cake.

Lovely as they were, I couldn’t help thinking this was all a little bit contrived. Yes, it was nice to mark the end of one stage of their life and the beginning of the next, but these smiling, bouncing, excited youngsters weren’t moving on through any merit other than having achieved a certain age. Yes, my daughter had done a lot, grown a lot, developed a lot, and learned a lot at both her nurseries, in no small part thanks to the wonderfully dedicated and inspired staff, but she hadn’t finished anything – she was only just beginning. We got some nice photos, ate the cake, and moved on.

With Benjamin, however, graduation seems utterly fitting. The two years he’s spent in the Green Room are laden with real achievements to celebrate: holding his head up; looking to both sides; expressing likes and dislikes; anticipating; recognising signs; choosing activities; making music; making friends. Tiny steps that accumulate slowly but surely. Graduation allows us to look back and see just how far he’s come.

Benjamin certainly perfected the art of sleeping through anything that doesn’t interest him

Unlike his neurotypical sister, Benjamin’s achievements haven’t all been fun. The children in the Green Room have worked hard: walking and talking don’t come easy to them. Smiling, turning their heads, focusing their eyes are real challenges to some of them. Benjamin is exhausted at the end of each and every day (if not by lunchtime). Graduation is a chance to show him how proud we are of the effort he’s put in.

With a fragile, life-limited child, we never know if the current school year might be his last. He can go downhill so quickly we don’t know if each day might be his last. Our opportunities to make special memories are finite. Graduation is a precious source of photos and thoughts to cherish.

Benjamin, like many children with additional needs, goes to nursery (and will go to school) on the other side of the county. So I don’t see his teachers every day; I send him off in a taxi with his clinical support worker, and get a written report back on his return. I don’t see him interacting with other students; I rarely meet the other parents of children in his class. Graduation and other formal events are vital opportunities to meet Benjamin’s classmates (including his adorable best friend), to crystallize friendships with other parents with whom we actually share a great deal, to see the environment in which our son is being nurtured, and to meet with the people who care for, teach, inspire and monitor my little boy’s progress.

And what incredible people they are! Graduation Day is an (inadequate) opportunity to thank them for all they have done for Benjamin and for us over the past two years. These are not just teachers. They are carers, nurses, and friends, to Benjamin and to me. Theirs is not just a job but truly a vocation; they couldn’t do it otherwise. I trust them with my precious boy and they repay that trust a thousand times. Teaching and caring for children like Benjy is physically, mentally, and emotionally exhausting; saying goodbye to them is a wrench. On Graduation Day, we were all smiling through tears.

Despite their totally hands-on job, Benjamin’s teachers had somehow had time to make him a certificate and a book of hilariously-annotated photos of his time at nursery. There were presents and a video slideshow. There was cake and much-needed coffee. Graduation Day was a chance to relax, in the busy and stressful world of special needs parenting, to share a cuppa and a laugh with people who ‘just get it.’

It’s not just Benjamin who’s grown during his two years in the Green Room. I too have learned a lot. I’ve learned who to trust, when to ask for help, how to let go (to some extent), and when and how to fight like only a mama bear can. Graduation was a chance to reflect on how far we’ve all come over the past couple of years.

For a boy whose prenatal prediction was ‘incompatible with life,’ Benjamin continues to exceed expectations and defy predictions. For a child who was unlikely to start nursery, let alone finish it, Benjamin has beaten the odds. He’s passed huge milestones and, with the help of the Green Room staff, made irreplaceable memories. He might not have worn a mortarboard, but he’s built a legion of admirers who would in any case just have taken it off to stroke his hair. He’s a worthy graduate of the Green Room. Bring on Primary 1 (and don’t worry ladies, we’ll be popping back to nursery for cuddles very soon).

Can I have a wee rest over the holidays please?

Torn

We are just back from weekend trip to Aberdeen. I say ‘we’. I mean my husband and I, and the two girls. Our first trip away without Benjamin.

I think we pulled off a pretty good impression of a ‘normal’ family on a ‘normal’ trip. Dare I say ‘minibreak’? A few bags slung into the boot along with sledges just on the off-chance – no squeezing in of feeding supplies, nebulisers, and suction catheters around the wheelchair. We stayed in a simple family hotel room – no phoning round for hours to find anywhere with a wheelchair accessible room that would sleep five (actually, I did phone around for hours before I remembered that, this time, Benjy wasn’t coming with us. Doh.).

But for me it was far from normal. My normal is with Benjy, and Benjy was away having his own holiday. We are fortunate to have access to a specialised, nurse-led, NHS children’s respite service, the kind of service that is under great threat in many parts of the country. We are grateful they can accommodate Benjamin for a weekend once a month – enough time for us to really make time for the girls. We are thankful that the staff have worked with us to get to know Benjamin well enough that we can entrust him to them.

But still, I’m torn. I don’t want to move too fast. We could have flown to New York for the weekend! But no, take it slow, baby steps, for all of us but mostly, if I’m honest, for me. So Aberdeen was a test run, somewhere we could get back from within a few hours at any time of the day or night. A test run for the logistics, yes, but also a test run for the emotions.

A six year old girl in snow-gear, arms outstretched, standing on a rock on a snowy hill

On top of the world (or a small hill in Aberdeenshire)

Sure, it was simpler and easier. Sure we could do things – like visit friends with inaccessible houses, like climb a snowy hill, like stay out later than usual – that we can’t do with Benjamin. The girls had a ball, singing songs in the car, playing in the snow, exploring the hotel, ransacking the snacks, a longer bath and a later bedtime. I can’t say we got any more sleep than we do at home – two excited girls and a late night in one room doesn’t compute. Add to that all the packing, and driving. It wasn’t exactly a rest, and it wasn’t a family holiday – how could it be, without Benjamin?

Sure, Benjy doesn’t seem to miss us. He enjoys the attention and the activities and the lovely lady nurses! But does he realise? Does he know that we’ve gone away without him? That we’re having family time without him, because it’s easier; because it’s too much trouble to take him with us? I wouldn’t dream of leaving his sisters with anyone else overnight at the age of four; how can I justify treating him differently? Especially when his needs are so great and his time with us may be short.

What if he gets sick and I’m not there to interpret how he’s feeling? What if the worst happens? Even if the worst doesn’t happen, we are all missing out on precious time with Benjamin. Will we regret these lost hours when there are no more hours with him to be had? Have I drunk in enough of him that I will remember his scent? The feel of his cheek? The little noises he makes when he senses I am near? Have I taken enough photos of his little freckled nose? Have I let his sisters have enough cuddles to last them a lifetime?

But his sisters can’t live their lives within an hour of the hospital. They can’t keep missing out just in case. They need to live now, experience the things their friends do now; they need Mummy and Daddy’s undivided attention, now. And I need time away from Benjamin to realise just how much I do miss him, to appreciate how much he means to me as a little boy, as my son, as my daughters’ sibling, rather than a patient and a full-time job.

So, hard though it is, it is good for us all to have this time apart. It wasn’t a family holiday and it wasn’t meant to be. All we can do is to make the most of our time away, to do things we can’t usually do, go places we can’t usually go, to spoil the girls and spoil each other, to try not to argue and try not to feel guilty if we do. And when we get back together, all we all want to do is hold Benjamin close, hug him tight, listen to his welcoming murmurs, kiss him gently, kiss him hard, hold him some more and appreciate being a family once again.

Just a cold

The males in our household have been stricken with a cold. My husband has adopted the standard attitude of shuffling around the house looking sheepish, occasionally being wracked by paroxysms of coughing that needlessly shake his entire body, and ostentatiously ironing handkerchiefs and boiling kettles for uncertain purpose. This in itself is pretty hard work for the females of the family (with the exception of the guinea pigs who seem remarkably unbothered by the whole thing).

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No preschool today

Benjy, however, takes it to another level. It usually begins with a sudden dramatic increase in secretions (i.e., snot). During his morning physio routine, a white froth starts pouring from his nose. He’ll need suctioning every half an hour, day and night, rather than twice a day.

He’ll be uncomfortable – as you or I would be – but he cannot tell me so. Instead, his muscles will tense, he’ll be stiff, hot, jumpy and irritable, making me fear a seizure. He won’t sleep, and neither will I.

After a couple of days the secretions will thicken and he’ll wake choking in the middle of the night. This is the scariest time, frantically suctioning a frightened boy to clear enough of his airway so that he can breathe. His heart rate rockets and so does mine. I try to remember that, despite all his complex requirements and specialist equipment, Benjamin is still just a little boy with a cold. I give ibuprofen and Calpol, drop Olbas oil on his pillow and place bowls of steaming water in his room.

Then the wheezing starts – ‘viral induced wheeze’ they call it. Although his secretions are clearing, his oxygen levels are dropping. So it’s sixteen puffs of his salbutamol inhaler a day – twelve at scheduled times and four to keep in reserve for that middle-of-the-night panic.

A week in, and when most of us would be starting to get over it, the rest of his system starts to respond. This is what would have put us in hospital last year but now we are (hopefully) equipped to deal with it at home. With Benjy – and this is typical of jejunum-fed children, I’m assured by our patient specialist gastrointestinal nurse on the phone – his output of stomach juices and bile increases dramatically. So dramatically that they can’t all drain out into a bile-bag, but end up being vomited out of his mouth and nose. Now I know all our kids are superheroes, but sometimes I really wish Benjy’s superpower wasn’t firing green slime out of his nostrils onto his poor unsuspecting support worker…

IMG_20171220_221317_051.jpgWith the vomiting comes an increased risk that Benjamin will aspirate his stomach contents into his lungs and cause a chest infection. Our amazing team of ‘rapid response’ specialist respiratory physios come to the house to assess him and take swabs for analysis. We embark on a cause of strong antibiotics in addition to the prophylactic antibiotics that he is on permanently through the winter, just in case. We put Benjy to sleep on his side (worse for his back, better for his lungs). I ‘sleep’ with the video-monitor inches from my face, ready to leap up when I hear him cough. I wonder how we’ll manage in the New Year when we move him to a downstairs room.

The antibiotics have their usual effect of (without going into too much detail here) producing nappies that require an entire change of clothes, several times a day. I resort to sitting him on an incontinence pad to save washing his chair, car seat, or buggy. And I double his daily dose of Imodium. But he goes 48 hrs between bile-vomits, which is an improvement. We feel safe to send him to our wonderful NHS respite centre for a couple of nights. I feel glad they will be dealing with the nappies. I keep my fingers crossed they don’t panic and send him to the hospital.

I don’t know how much it has cost the NHS to see Benjamin through one simple cold – providing us with a sats monitor, suction machine, catheters, nebulisers, inhalers, medications; giving us the expert assistance of doctors, pharmacists, nurses and physios. I know it’s cost our family about a fortnight’s sleep, two swimming lessons, one meeting about Changing Places toilets and a whole lot of Christmas shopping.

But for all of us, this is infinitely better than having Benjamin in hospital, splitting our family up and putting him at risk of catching all manner of other winter bugs. I’m proud of what we’ve achieved, and I’m grateful for the equipment and training we’ve been given and the trust that has been placed in us, to keep Benjamin safe at home. Team Benjamin has risen to the challenge, so far.

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On the mend