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.

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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.

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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.

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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

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Festival spirit

Yesterday, I took the two little ones to a festival – Daytripper – on my own. It’s not the sort of thing I would normally do. I’m not great at mixing with people I don’t know, or don’t know well. It’s in a crowd that I feel loneliest and most conspicuous. And with an energetic toddler and Benjamin, with his tube and his bile-bag and his suction pump I was sure going to be conspicuous. And without my chatty biggest girl and my husband I was sure going to be lonely.

Ric and Jackie were away camping (with his best mate and her best mate and our car and a bottle of whisky), and this festival only comes around once a year, and it is only two minutes from our house. So my options were to sit around the house listening to it from outside, or go and join in the fun: try not to worry about the routine of medications and feeds and physio and do something ‘normal’ families do.

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The children were both totally up for it

Maybe I’m over-egging it a bit: it wasn’t exactly Glastonbury – it wasn’t even an overnight thing. It was a few bands I have to admit I hadn’t heard of, in a small park with only one entrance for Caitlin to escape out of. The sun was even shining and the loos were cleanish (even if I couldn’t get the buggy through the door). And, as I said, it was literally two minutes’ walk from our house.

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Mummy, why is the sky that funny blue colour?

I did find it a bit difficult to mix at first – but mostly because I had to keep breaking off from conversations to chase Caitlin, or to move Benjamin into or out of the sun as I fretted whether he was getting too hot or too cold. But Caitlin made friends with a little boy through the medium of bubbles, so I braved the bar for another sort of bubbles…

…and as the sun went down and the pyrotechnics (really!) came on, we all drew closer to the stage and I found myself drawn into a friendly crowd of local mums, dads and neighbours. The music was great, the pizza was yummy (if a little grass-covered after Caitlin had finished with it), Benjamin enjoyed the lights and the music, and Caitlin stayed within sight most of the time, primarily because she didn’t want to move too far from the donut stall. We stayed out almost to the end – well past the children’s bedtime if not mine – and listened to the last couple of songs on the way home. I even managed to get both children to sleep after all that excitement – in time to reward myself with a shower and another (small) glass of wine.

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Grass-cuttings with your pizza, anyone?

So were we conspicuous? Well, maybe – but certainly no more so than the 87-year-old who was dancing with anyone and everyone and enjoying every minute of it. Yes, it was tricky managing tube-feeds and nappies without getting everything contaminated with crazy-string, but no-one else seemed to bat an eyelid. Yes, a little girl came up and asked questions about Benjy (much to her mum’s consternation) but not in a fearful or critical kind of a way, just out of innocent interest. Yes, Caitlin did repeatedly make off someone else’s football but, well, I just pretended she wasn’t anything to do with me!

And was I lonely? Well, of course it felt strange being there without my husband to hold, and without my biggest girl to indulge (we brought an Elsa balloon home for her) but really I was reminded how warm and welcoming this small town can be, if I only stop looking for problems and let it.

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Feeling the love

At the same time as I was dancing the afternoon away with my children, another SWAN family elsewhere in the country were visiting their music-loving little boy’s grave, leaving sunflowers in memory of his bright spirit, which passed just over a year ago. I honestly cannot imagine what that must feel like. To visit your own child’s grave. However hard it is – however hard – to care for Benjamin, to get out and about with Benjamin, to fight for what he needs and to do things that ‘normal’ families take for granted; it cannot ever be as hard as that.

So however conspicuous, lonely, difficult and downright different our life is, we need to make sure we keep on living every minute of it to the full. I will dance until I’m 87 if I can keep my loved ones dancing with me. I certainly intend to be dancing at Daytripper 2018.

To those who make our lives difficult … and those who make them better

It has not been a great week. Friday night I finally worked out (with the help of a head-torch and strong stomach) what had been keeping my five-year-old (and therefore the rest of the family) awake for large proportions of the last couple of nights: threadworms. Cue a weekend of swallowing foul-tasting medicine (okay, banana-tasting, but I don’t like bananas so it tasted pretty foul to me), nail-cutting, disinfecting, hoovering, and washing every damn sheet, towel, and pair of pants in the house.

About six loads into the approximately twenty loads of washing that needed doing (why my husband needs to keep six pairs of jeans on the go at the same time is beyond me), the trusty washing machine gave its last gasp and went to Hotpoint heaven. Well, you have to laugh don’t you? Off to the shopping centre for a new washing machine and some more pants.

If we huddle together maybe she won’t wash us? (I did)

The day the new washing machine was delivered, which also happened to be the day the temperature went down to -1 degrees outside and it snowed a blizzard, and the day Benjamin was back home from respite, our central heating thermostat decided the washing machine was having far too much fun up there and headed off to join her. Cue another sleepless night waiting up for the British Gas man and making sure Benjamin was not alternately freezing to death or catching fire due to the slightly rickety electric heater we set up in his room.

Perhaps surprisingly to those who know me, I actually did manage to stay positive through these tribulations, despite a niggling sinus infection and a baby who still decides to feed for five hours a night, because I know they were really nobody’s fault and I could make a plan to resolve them. I always feel better if I have a plan.

What does upset me are the things that I have no control over but somebody else does. The things that just aren’t fair. The things where people just don’t think. The things that make our life – already stressful, exhausting and expensive – just that little bit more difficult. The things that, on a good day, I can shrug off, but on a bad day tip me over the edge.

The neighbour who consistently parks her car overlapping our disabled space, sometimes so close that I can’t even open the boot, let alone open it wide enough to get a wheelchair in.

The parents without blue badges who fill the disabled parking spaces next to my daughter’s nursery, and those who do the same at my son’s even though it has an SN nursery attached so clearly they are going to be needed.

The parents who think it’s okay to leave their towels and clothes ‘bagging’ the only disabled changing cubicle at our local swimming pool while they shower, so I have to wait with a dripping, freezing five-year-old, or leave Benjamin outside the cubicle blocking the gangway, or confront them and risk their (sometimes vitriolic and frankly foul-mouthed) wrath on their return from the shower.

The medical secretaries who repeatedly ignore and refuse to return my worried calls.

The paper-pushers who drip-feed us form after form over week after week, while they mark Benjamin up against their secret criteria to decide whether he is entitled to medical support to enable him even to attend the nursery placement to which he is legally entitled.

The last straw…

But these are minor niggles, really, compared to the worms, ohmygod the worms those that many SN parents (and carers) face. Parents who feel compelled to take horribly drastic measures because they see no other way to get their child the support that he needs. Parents who have to go to court to get the right school, the right house, or the right care for their child. Parents who need physical protection from their own children. Parents who risk losing their homes because they cannot work to pay the mortgage. Parents who aren’t believed that their child has needs because they behave perfectly at school but let all their emotions out at home. Parents who have been allocated respite but have no one to provide it; parents who desperately need respite but have been refused it. Parents who have to fight every step of the way just to ensure their child is healthy, happy and included and their family stays together and has the energy to fight another day. And these parents still put a brave face on it and support each other because that’s what we do.

And they are minor niggles because, for every one of the people who make our lives difficult, there is always at least one who makes it easier.

The washing-machine man who fitted our new machine with a cheery smile and a knowing nod. The boiler-man who came out in the middle of the night and returned the next day with a brand new, all-singing all-dancing internet-enabled thermostat. The friends who volunteer to hold (and jiggle) Caitlin while I get Jackie changed after her swimming lesson, so that I have one less child to keep an eye on. The neighbours who look out for us and invite us over for coffee. The agency carers who come in on their day off and spend time encouraging Caitlin to walk and listening to Jackie chatter as they take care of Benjamin’s needs. The lady at the council who actually listened to our problems, understood, and promised to do something about them. The hospice staff who arranged a photographer to take some family photos for us, and the photographer who refused to charge for them.

New washing machine (and expert washing machine selector)

So we’ve got through this week with our humour (if not our wallets) intact. With a few more grey hairs and bigger bags under the eyes. There is still enough in our lives to smile at and plenty to laugh at. Often it’s not about money and limited resources, it’s just about thoughtfulness, consideration and an inclusive attitude. Just don’t mention the worms.

Reasons to be thankful

My last post was dedicated to my brilliant baby boy. But I know he – we – wouldn’t be where we are today, still standing, still laughing, still together, without the help and support of many, many people.

My parents, and my parents-in-law, have been there at the end of the phone and at the drop of a hat, to care for children, cook meals, build compost heaps (well, a compost heap), do laundry, go shopping, iron shirts, calm tears and give advice (asked or unasked-for!). All with barely word of thanks and, more often than not, with ungrateful criticism. The rest of the family – Benjamin’s aunts, uncles, great-grannies, great aunts, great uncles, cousins of various descriptions, have all been there for us too, and we have never felt alone.

Our friends, near and far, continue to look out for us, call us, drag us out for a drink, care for us, laugh with us, cry with us. You know who you are and we hope you know how grateful we are.

We have been incredibly lucky to have been assigned a brilliant team of health professionals right from the very start. From our GP, health visitor and practice nurses, through the obstetrician, midwives and nursery nurses at the Edinburgh Royal Infirmary, to the community team of paediatrician, physio, OT, speech and language, plus wheelchair services, eye doctors, neurologists, counsellors, geneticists and more, we really have received exceptional support and it seems nothing is too much trouble for Benjamin. Add to this the increasing involvement of a team of dedicated and proactive visiting teachers, and I really can’t fault the care we have received so far.

As a stay-at-home mum in a new town with no experience of special needs of any kind, support groups, both on- and off-line, have been invaluable to me and to Benjamin for finding information, talking to those with similar experiences, and making new friends. I am particularly grateful to my local special needs parents’ group, and SWAN (Syndromes Without a Name), as well as the helplines at Kindred and Contact a Family.

The two people who have given, and given up, the most are of course my ever-patient husband and ever-cheery daughter. Every minute of every day I have reason to be grateful to them; I simply couldn’t do this without them.

In fact, with all this help, support and encouragement it’s easy to fall into that mothers’ trap of feeling guilty. In this case, guilty that I have it so easy, that I haven’t had to fight for recognition of Benjamin’s condition, or for treatment, care or benefits. We haven’t spent weeks on a hospital ward. We get some sleep most nights. We have food (and wine) in the fridge, and gas in the boiler. Living with a special needs child has not yet led us – as it has many – to depression or divorce.

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A dear friend of mine learned recently that she has perhaps six months left before she loses her battle with cancer. Six months to show her partner how much she loves him. Six months to remember the good times with her friends and to say thank you to her family. Six paltry months to give her two-year-old daughter enough memories to last a lifetime.

So I’ll try not to waste any more precious moments feeling guilty, wallowing in the challenges life has thrown at us, or wondering at how fortunate I am. I cherish each person who, in any capacity, shares any step of this journey with us. Thank you.