End of an era

My eldest daughter, Jackie, nuzzled her way up and latched on to my breast whilst I was still in the recovery room after her caesarean birth over six years ago, and I’ve been physically nourishing my children ever since. In fact, I’ve been either pregnant or breastfeeding (or both) for longer than I was in High School. From the start of my first pregnancy, I was always keen to breastfeed if I could – I knew it was more convenient, cheaper, and healthier for myself and my babies; but I had no idea what a physical and emotional pathway it would take me on, or how long that journey would last.

First time for us both

Jackie weaned naturally from the breast when she was eighteen months old, and I was six months pregnant with her brother. Benjamin was a little harder to get started, but he fed slowly on drips of expressed colostrum from a syringe; then, thanks to the amazing guidance of the nursery nurses on the labour ward, graduated to both breast and bottle. He surpassed all expectations in his ability to feed and gain weight, and we left the labour ward five days after he was born. By the time his gastrostomy was eventually fitted, I was already pregnant with his baby sister.

Caitlin was a greedy little thing from the start. She fed for eight hours solid in the delivery room, while I was still attached to a syntocin drip and waiting for a bed in the labour ward. As a baby she would regularly drink more milk than her little stomach could handle – with inevitable consequences. By the time she started nursery at nearly a year old, she was able to go eight hours without milk, but morning, evening and night (and during the day on non-nursery days) she would still ask for ‘beebee,’ or just clamber up and pull down my top. She can feed lying, sitting, kneeling, standing up; whilst I am sleeping, cooking, tube-feeding Benjy, or reading a story to Jackie. It’s the easiest way to lull her to sleep, and the nicest way to comfort her when she is upset.

Caitlin is two and a half years old. I’ve breastfed her for more than the World Health Organisation’s recommended minimum time, and longer than 99.5% of UK mums. I’m starting to get tired of spending my evenings sitting in a darkened room feeding her to sleep, of not being available to my other children when they need me, of only wearing saggy old bras, stretchy tops and quick-access cardis. I know she doesn’t need the nourishment any more – she has a huge appetite for solids! Hopefully, she’s old enough to understand a little. She talks in long sentences, is ready to abandon her cot for a big girl bed, and almost ready to toilet train. So, after a few days of explaining, “Beebee’s going to run out soon. Beebee’s nearly empty,” our breastfeeding journey also has come to an end.

Caitlin has a huge appetite for solids…

We even let her eat spread straight out of the tub (third child syndrome)

To be honest, she’s taken it much better than I have. A couple of nights of cuddles with Daddy (I’m so lucky to have a hands-on, supportive partner) and Caitlin has gone to sleep with remarkably little distress. She still comes asking when she’s tired or upset, but after a quick reminder that, “Beebee’s all gone now,” she can easily be distracted with a toy or something yummier to eat.

To be honest, I was devastated. There were doubts. There were tears. I was terrified that my little girl would think I was rejecting her, would be utterly confused by the change, would hate me. I was worried about how I will now fulfil my role as a mother. I was lonely as I sat downstairs waiting for Daddy to finish putting her to bed. I was sad that one of the main things my body was built for, it will never need to do again.

My last baby

And the pain – oh my goodness – pain worse than when my milk came in as a new mum! I had hoped that Caitlin really wasn’t taking very much milk any more, and there wouldn’t be much of an adjustment to make. When my engorged breasts showed me how much milk I was making, I felt even more awful for taking it away from her.

Ten days on and we’re both doing better. My boobs are starting to settle down, even if I can’t lie on my front just yet. Caitlin will allow either me or Daddy to put her to sleep with very little fuss. She still comes into our bed for cuddles in the night, but it’s no more than cuddles (I’m still keeping my top on just in case!), and long may they continue. It still breaks my heart when she occasionally asks for milk, when she’s upset or just taken a tumble. It takes all my strength not to say “Oh go on then, what harm could it do?” But if Caitlin can be strong, then so must I.

I never tire of pictures of my sleeping babies

Maybe in the longer term this will actually enable me to be a better mother? I’ll be less stressed because I’ll have more time for work and play. I’ll feel less guilty because I can do my share of the chores in the evening instead of playing on my phone behind Caitlin’s back while my husband does the laundry and makes packed lunches for tomorrow. (Yes, I know breastfeeding is an important job too, but sometimes it’s been hard for me to feel that).

Maybe I can find time to get fit in the evenings. Maybe I can stop eating biscuits all the time (I’ll have to stop eating biscuits all the time now I’m not burning 500 calories a day making milk!). Maybe my husband and I can spend our evenings together sometimes. Maybe we can even leave the children with a sitter and have a night out. Maybe I can go out with my girlfriends, or to the committee meetings that always seem to be scheduled for feeding time. Maybe I can dawdle home from my pilates class instead of rushing to be back for the end of bath-time.

Maybe I can be more available for all my children. On the second night of our weaning experiment I was able to camp out in the garden with Jackie – just for fun! If Benjamin is awake in the night, from now on I’ll be able to go and lie with him for as long as he needs me, rather than just popping his projector lights on and leaving him to his own thoughts. With two adults now able to meet the needs of all three of our children, we have more flexibility. Maybe this is the right thing for all of us.

I’m so lucky to have had only good experiences with breastfeeding, to have been physically able to feed for so long, and to have been supported by my family and community to do so. I was never one to keep it under wraps – my children wanted to feed anywhere and everywhere, and wouldn’t tolerate being hidden away under a scarf or muslin. During my first few weeks I was sitting by the checkout in Sainsbury’s breastfeeding Jackie, and an older lady came up to me, not to complain, but to tell me how “lovely it was to see”. When in hospital with Benjamin, the nurses always let me bend the rules and bring Caitlin onto the ward too – they would even sneak me cups of tea and pieces of toast to keep me going. The only problems I’ve encountered have been my feeding children’s biting, tweaking, pulling, hitting, and twanging…

I’m proud of what my body has done over the last seven years, and immensely grateful that it was able to. I’m amazed at how my outlook has changed through being a first-time mother, then mother of a child with complex needs, then mum of three, and a breastfeeding mother to all of them.

Because it has been so easy, so comforting, and so special, breastfeeding has become part of my identity; almost a crutch. Pregnancy and breastfeeding made me feel like a real woman. Now, I have to find a new way to feel like that. Now, I have to mother my children by my words and actions alone. Now, I have to see if I really have what it takes, and that’s scary. With big changes coming up – Benjamin will be starting school, and I’ll be going back to work in a couple of weeks – I’m no longer quite sure what kind of mother I am or who I will become. I guess I’ll start by dawdling home from that pilates class and shopping for some lacy bras.

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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.

“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).

Benjamin enjoying the drive

First stop: Aldi!

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!

Our home in the forest

Pizza. Nuff said

Allez les Bleus!

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?

The cost of disability

The Kiddicare ‘Traffic’ Group 1-2-3

Above is a suitable car seat for most four-year-old children. It costs £29.99. Below is a suitable car seat for Benjamin. It costs £2,301.00.

The JCM ‘Carrot 3’

Panelled XL Bean Bag in Aqua, from http://www.BeanBagBazaar.co.uk

Above is a pretty fancy bean-bag. It costs £37.99. Below is Benjamin in his bean-bag. It cost £972.00.

Chillin’ in ma p-pod

The average cost of a new bathroom in the UK is £4,500, according to specialists Victoria Plum. Quotes for the downstairs wet-room we need to be able to shower Benjamin in safety (there isn’t even the option for a bath, much as he loves them) range from £9,350 to £14,760. A grant from the council will cover part of this, leaving us to shoulder approximately £8,000 of the cost.

A pack of vests for my youngest cost £3.50 for five; vests for Benjamin are £3.50 each, and these are the cheapest ones. I could go on (and on, and on, as I’m sure could most people with a disability). The charity Scope reported this year that on average, “disabled people face extra costs of £570 a month related to their impairment or condition,” even when their benefits such as Disability Living Allowance or Personal Independence Payment are taken into account. This is undoubtedly our experience. Because of Benjamin’s needs, we spend more than other families on heating our house, more on travel to and from hospital and appointments, more on insurance, more on clothing, more on laundry, etc., etc. Not to mention the fact that our income is lower than it might be because there is no way I will ever be able to work full-time since childcare for children like Benjamin outside of school hours is non-existent.

How are we supposed to meet these extra costs, none of which are met by the state? We were fortunate that the charity Newlife fundraised to cover Benjamin’s p-pod. Radio Forth’s ‘Cash for Kids’ are contributing a generous £3,000 towards his wet-room. The wonderful staff at Kindred have tirelessly applied for small grants to cover the extra travel and childcare costs we face whenever Benjamin is hospitalised.

But that’s it. So far I’ve drawn a blank trying to find a charity that will fund the car seat that Benjamin urgently and desperately needs – without it he simply can’t travel safely which means he won’t be able to get to important hospital and therapy appointments. There are no other charities that will cover the outstanding cost of house adaptations. The reason? The major sources of funding for disabled children, such as Family Fund and the Caudwell Trust set an earnings threshold which we fall just above. Although Benjamin fits the medical criteria, we will never be able to take one of Caudwell’s ‘Destination Dreams’ holidays to Florida, because we don’t fit the income criteria and there is no way we could afford, or have the time to organise, the immense practical and medical support needed to take Benjamin on a plane and far away from his local hospital.

One charity sent back my application for funding to help with Benjamin’s car seat, with pink highlighter over the expenses we declared that apparently indicate we are ineligible for help, including the cleaner that I pay for out of Benjamin’s DLA to allow me more time to look after him, and the amount I estimated I spend on presents (for when the girls go to other kids’ birthday parties, and end of term presents for the numerous staff that help all of our children in such wonderful ways). Benjamin’s sisters are stigmatised enough by association with their brother and miss out on many things because he is in hospital or has yet another appointment. The least I can do is try and ensure they attend their friends’ parties when they are able, and that they take a present with them like everybody else. This despite the fact that I accounted nothing for, say, extra expenses during hospital admissions, or holidays, as there were no boxes on the form for these. Clearly families with disabled children are not expected to enjoy such luxuries. Our girls have had nothing more than a long weekend away since Caitlin was born!

We are one of a large, hidden caste of families with disabled children who fall between two stools: we do manage to work and have an income that puts us just over the threshold for receipt of benefits including carer’s allowance and tax credits, and therefore face the enormous additional costs of disability practically unaided, on top of paying the usual bills such as a hefty mortgage and attempting to provide necessary items and the occasional treat for our children. I know we’re living beyond our means, even if I haven’t got time to sit and calculate our budget: the last time I worked through our income and expenses with our Kindred advocate, a couple of years ago, I was shocked to find we were running at a net deficit of roughly £400 a month.

Yes, we are fortunate enough to have some funds in a savings account in case of emergency. In case, say, Benjamin needs a power-chair that won’t fit down our hallway and we have to move out of our ‘forever’ house. In case, God forbid, he passes away meaning our Motability vehicle would be repossessed and we would suddenly need to buy a car. And of course we’ll happily use our savings for anything that Benjamin needs, because nobody else is going to help us with those kind of expenses. Money in the bank isn’t everything, won’t buy us happiness, and is no use when you’re gone. So unlike most middle-class families, building up their savings to put their children through university, ours will likely be whittled away well before they may choose to go there.

I know we are the fortunate ones. Every family has some kind of unexpected expenditure to deal with, whether that’s a disabled child, a sudden redundancy, a health crisis, or just a little girl who would give up everything to ride a horse. At least we do have some rainy day funds that will suffice for now. For now we can absorb the extra costs of disability without running into debt, relying on foodbanks, or disadvantaging our children’s prospects in today’s dog-eat-dog world.

And I hate doing it, but as well as eating into our savings I will continue to fight for state and charity funding, because that’s the kind of world we live in. That’s what the rich, the influential, the educated and the well-connected are doing. I will write eloquent letters, I will fight social media campaigns, I will go to the press, and I will cry down the phone if I have to (usually I can’t help it anyway). I will reapply again and again explaining our household budget in ever more demeaning detail and pleading for Benjamin to get the car seat that he needs before he no longer needs it.

I hate doing it because it makes me feel mercenary. Because it makes me go over and over our worst case scenarios when I want to hope for the future. Because it means I have to explain and justify our spending habits to strangers. Because it makes me feel guilty about taking limited resources away from those that don’t have the knowledge, education, time, health, resources and energy to fight for them.

I hate doing it because I don’t want Benjamin’s sisters to pick up on it. I want my girls to prioritise the values of happiness, kindness, fairness, gentleness and concern for others over money, and I don’t want them to see me doing any different, but I also want them to know I fought for them to have both. So while I will keep fighting I have to balance that with awareness-raising, fundraising, volunteering, trying to give back to others in as many ways as I can.

It’s draining, it’s demoralising, it’s exhausting. The financial costs of disability are enormous, but the cost is not just financial; disability (by which I mean social disability – being disabled by the world around us rather than by one’s own limitations) costs dear in terms of time, energy, sanity, stress and relationships. We are so fortunate that – at least until our savings run out – we can shoulder the financial burden and this gives us the breathing space to be resilient against the other pressures. Many are not so lucky.

How do I fight for all my children to have the best start in life, whilst at the same time teaching them values of gentleness and concern for others, without driving myself insane in the process?

That GDPR thing…

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Fake it ’til you make it

Someone once told me that, however bad you’re feeling, simply smiling will make you feel happier. It’s to do with the physical action of moving your face muscles triggering neural pathways involved in emotion. Or something. I don’t know whether it’s scientifically proven, anecdotal, or just bullshit.

Anyway, I wonder if the same can be said of looking like you’re in control? Coping. On top of things. If I behave every day – on the school run, at work, in all Benjamin’s appointments, when I’m changing shitty nappies, when I’m frantically suctioning his airway until he can breathe – as if this is all a walk in the park, then is it? If I keep putting one foot in front of the other and holding one tiny person by each hand instead of rolling on the floor and screaming like a toddler am I doing just fine? Or am I just kidding myself? Am I actually kidding anyone else?

I sure want to look like I’m coping. I want to be smart, svelte, smiling and on time, with matching socks and freshly brushed children like everyone else. Why? Because I’m proud (too proud). I’m not about to prove right those I overheard saying, “I don’t know how she’ll cope with three children so close together.” I’m not about to live up to their prediction that, “The eldest will be neglected.” I will bust a gut to show them that I am not only coping with my three children but that all of them are completely loved, cared for, listened to, engaged with, taught, and nurtured.

Look, I even give them healthy snacks

Please don’t squeeze the guinea pig too hard

So worth it (when they are asleep)

And because, actually, coping has always been something that gives me a little buzz. At school I loved to be the responsible one – the pupil the teachers could trust to run errands not just reliably but well. I like being the colleague that people can call upon to take on an extra task and know that it will be done excellently and on time. The more things I volunteer for, the more I can kid myself that I am useful, my life is meaningful and valuable, and that I am in control of what I do rather than simply responding to each demand as it arises.

And, because I have to. If I don’t keep on top of the childrens’ calendar and my work commitments and the shopping and the laundry and feeding the guinea pigs and mowing the lawn and making sure the church magazine is out on time who’s going to do it?

See, they get new shoes. She’d only gone up three sizes…

Yes, we are very lucky to have a ‘village’ that would do their best to step in in a crisis (and we probably wouldn’t have to cook for a month!) and yes, we have a social worker and six hours agency care a week, and yes, we can afford to pay for some day-care for the girls when we need it, but in the end the buck stops with me to organise and coordinate everything – to carry the ‘mental load.’ With school and nursery and reading practice and homework and swimming and music and ballet and a house and a car and all Benjamin’s appointments and prescriptions and equipment and a little bit of campaigning and a little bit of work and everybody outgrowing their shoes all the time, there are just so many balls to drop!

Are they starting to fall? How long have I got before people realise it’s all a façade? Where the professionals once said, “You’ve done so well with Benjamin!” Will they start realising that I should do so much more? Where friends once said, “You’re always on top of things!” Will they start noticing that my to-do list is so long things are dropping off the bottom? That the girls have been promised new curtains since I got my sewing machine, the Christmas before last… That I told a colleague I’d write a ‘topical’ paper two summers ago… Do my family notice that I’m less patient, my sense of humour has shrunk, I drink more wine, and we’re always out of salt and vinegar crisps?

Now that two out of the three children are mobile and talking but only one of them has any sense of danger or ability to understand reason, I am seriously outnumbered. Not to mention the fact that none of them sleep through the night… When I’m home alone with them I’m a nervous wreck: planning, imagining worst case scenarios, trying to second guess which one will need me next, how to keep the other two happy at the same time, and when it’s safe to go for a pee. And out of the house is worse.

Some weeks I feel like I’ve embarrassed myself, let everyone down, like I can’t do this at all; others I feel I have totally got this. Bizarrely, the latter is usually when things are busiest, Benjamin is poorliest, and I am most overstretched. It’s when we’re whiling away a sunny afternoon at the park because we don’t have to be anywhere particular that things seem to go properly tits-up. Perhaps I really do thrive under pressure? Or do I only realise what a car-crash my life is when I have time to think? And am I the only one? Is everyone else doing better? Or are they too just winging it, firefighting one crisis after another and relying on chocolate and a good mascara to face the world? Are we all swans, swimming serenly past one another as we paddle frantically under the surface to stay afloat? And if I keep faking being in control will it one day actually come true?

Sunshine and ice cream make everything alright

Oh, and huggles too

Crazy lady (credit my eldest for this flattering photo)

Captain Endurance and the Imperturbable Girls

I have to admit, I’m not really up on my superheroes. I understand things have moved on a bit from Thundercats (I wasn’t allowed to watch He-Man and the Masters of the Universe because it was on ITV and therefore infra dig). I’m painfully aware of the PJ Masks, thanks to my six-year-old and YouTube, but the whole Marvel Empire is largely a mystery to me.

However, I really don’t feel I’m missing out because I have daily contact with at least three superheroes of the absolute superest kind: my children.

Leader of the gang, Benjamin, is ‘Captain Endurance’ because the number of unpleasant, frustrating, and downright tedious things he puts up with (and, often, sleeps through) without any fuss whatsoever is frankly astonishing.

He’s coped with four-hour seizures that were exhausting just to witness, not to mention the drugs needed to stop them – enough to put a horse to sleep. He’s undergone multiple surgeries under general anaesthetic. He tolerates being physically restrained for MRI scans, and multiple attempts to get a cannula into his veins at every hospital admission. Every few months a radiologist sticks a wire into his stomach and intestines, pulls out his feeding tube, and pushes a new one back in – a process that can take anything from ten minutes to four hours and generally makes Benjamin feel pretty sore and sick for a couple of days, not mention that the radiology suite requires a deep-clean afterwards to get the bile out of all the equipment.

Benjamin doesn’t complain at the worst pain of all – the application and subsequent removal of dressings each time his permanent IV port (he really is half-boy half-robot) is accessed, and that of the hyoscine patches that go behind his ear to reduce his dribbling. He is subjected to an unpleasant round of beating, shaking and squeezing going under the name of ‘chest physio’ twice daily (or more, if his little sister takes it upon herself to emulate the procedure).

At intervals throughout the day (up to half-hourly depending on how poorly he is), a catheter is forced down his nose and into his throat to suck out all the gunk that accumulates there – a procedure that must at the very least be uncomfortable if not distressing, yet Benjamin puts up with it; sometimes he even sleeps through it!

He’s on medications that can make you drowsy, medications that make you agitated, medications that taste horrible, smell horrible and drip all over his trousers. He’s fed nasty-smelling milk into his jejunum (the first part of the intestine) and is nil by mouth so he never experiences the sensation of food on his tongue or the satisfaction of a full stomach. From his vantage point in the kitchen he spends hours every day watching the rest of the family cook and eat meals, smelling curries bubbling, cakes baking, fish suppers fresh from the chippy, without ever getting to taste them himself. Yet he never seems to get frustrated or complain. Remarkably, neither do his wonderful carers who also arrive at tea-time yet aren’t allowed to partake.

However, this is preferable to what went before – months of being fed into his stomach only for the milk to reflux up his oesophagus and down into his lungs causing chronic chest problems. It’s also preferable to what went before that – a constant barrage of bottles and breasts trying to force milk of any kind into his undernourished little body, not being allowed to sleep for more than three hours at a timebefore another feed was due.

Then there’s the hours of waiting at out-patient appointments. There’s being weighed and measured and having the details of your bowel movements discussed in excruciating detail by your parents and a team of consultants and medical students. There’s sleeping constrained by a system of wedges that forces you to lie in a straight line no matter how much you want to curl up cosily in a ball. There’s never having shoes that fit, because by the time they’ve arrived from the Orthotics people you’ve inevitably grown out of them. There’s never having glasses that fit, because, well, no-one seems to be able to make glasses that fit you.

I think the thing that would frustrate me the most – although Benjamin bears it with beautiful grace – is never having control over even the minutiae of his own life. He is poked and prodded when he wants to sleep, and put to bed when he is not sleepy. He is constantly climbed on by his sisters, forced to watch their choice of programme on TV. He is cared for by carers he had no say in choosing (although he clearly loves them to bits), sent to respite when it suits the rest of the family, and generally surrounded by people with whom he can rarely communicate his desires. As yet, he shows no sign of annoyance at all the things he has to go through, no sign of frustration at the things he cannot do. I don’t know whether to wish for him to grow and develop to the point that he does get frustrated, or to want him to stay forever in a state of more-or-less blissful ignorance. And, since Benjamin’s condition has no overarching diagnosis and therefore no prognosis, I have no idea which scenario is more likely.

So yes, Benjamin is super-patient, super-tolerant, super-uncomplaining. He is Captain Endurance. He’s also super-amazing! Before he was born, it was predicted that he wouldn’t survive birth: he not only survived, he needed nothing more than a little rub to get him going, he registered the same APGAR score as his sisters, he spent zero time in the neonatal unit, and was discharged from hospital five days after he was born. It was predicted he would never be able to breastfeed and would need an NG-tube from day one: this superhero breastfed like a trooper until the age of 17 months. It was predicted he would be blind and would never recognise his family: Benjamin sees, recognises, tracks and smiles at the faces of people he knows and loves. Our little man works so, so hard to achieve every tiny milestone, superhero-style.

And is this a surprise? No, because Benjamin comes from a family of superheroes; just look at his sisters, ‘The Imperturbable Girls’! Among his little sister’s first words were ‘syringe’ and ‘suction.’ At the age of two, she can conduct a pretty rigorous round of chest physio when Benjy is least expecting it. At six, his elder sister can look after the little one when I need to look after Benjy; she fetches nappies and muslins, passes me the right size of suction catheter, and knows how to dial 999. Both accept uncomplainingly that they never get to travel further than Granny’s house, that sometimes we can’t go places that have too many steps or no suitable toilet; that we have strangers in our house every evening, that most school holidays will involve at least one long boring day playing on the iPad in A&E.

They put up with all of this because they don’t know anything different. Neither of them can remember a time before Benjamin. Neither of them has seen enough of other children’s home-lives to know that ours is unusual. They don’t know anything different – yet. Unlike Benjamin, they will definitely come to a point when they realise they are missing out. When they start to count the differences between their lives and their friends. Already, although they sleep through the ambulances arriving in the night, they remember for months the mornings that Benjamin wasn’t there when they woke up.

Having a ‘SWAN’ (Syndromes Without a Name; a child with a condition of unknown cause) for a brother will make this harder, as there is no easy explanation for any of us to fall back on. I can’t tell Benjamin’s sisters why he is like he is, and they can’t explain to their friends either. They live in a world of uncertainty because I can’t tell them what will happen tomorrow, next year, or in ten years’ time, for Benjamin or for them. So, imperturbable, yes; unaffected, no, and increasingly no as they get older.

My superheroes in their super-mobile (and a half naked doll for some reason)

In many ways, caring for Benjamin is easy: it’s all practical stuff. I can lift him, bathe him, feed him, medicate him, clear his airways and time his seizures. I can call an ambulance when I know I’ve done all I can. All I can do for my girls is to try to provide them with the support they need when they might need it: their school teachers are aware, they are on the waiting list for our heavily-oversubscribed young carers’ group, I try to let them know they can talk to me about anything and I will do my best to make things right. Perhaps the best way I can help them is to build on their superhero abilities by making their superhero status super-cool! They are part of the SWAN club! They get to join SWAN days out, share SWAN balloons, wear funky hoodies in groovy colours, and meet other SWAN siblings with similar superpowers. And I know – along with their SWAN pals, they will grow up to be super-accepting, super-inclusive, super-tolerant, super-gentle, super-strong, and with a super sense of fairness and justice. True superheroes.

As to Benjy, how will he grow up? Will he continue to push the boundaries of what is possible? Will he become a ‘SWAN graduate’ with a firm diagnosis? Will he join the ranks of SWAN angels gone far too soon but held forever in our hearts? Whatever happens, he’ll always be a superhero to us.

Friday 27 April is Undiagnosed Children’s Day 2018. Support the Superheroes: Text SWAN18 £3 (or any amount up to £10) to 70070. #UCDsuperhero