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.

DSC_0931.JPG

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.

_20190208_112324.JPG

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.

_20190208_112422.JPG

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.

_20190208_112153.JPG

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.

Advertisements

Breaking the chain

Last week was a tough one. My eldest was under-the-weather and whiny. My youngest was angry, violent and loud. My husband was overworked and unwell. Benjamin’s health was up and down, as usual. No-one had enough sleep.

We had problems with transport, issues with medication, missed phone calls from professionals, unnecessary arguments, and at times it felt like I would never make it to the course I was due to go on at the weekend.

But did I ask for help? Did I call anyone to let off steam? Did I dare admit it’s been tough? No. These are things I find incredibly difficult.

In my mind, it’s because I voluntarily chose this less-travelled path. Unlike many of my fellow parents of disabled children, who received a diagnosis at birth with that painfully inappropriate “I’m sorry,” or those who faced the agonising months and years of feeling that ‘something was wrong’ before anyone would take them seriously, I had the luxury of choice and preparation. I knew that Benjamin was going to have significant physical disabilities, learning difficulties, developmental delays, and a limited life expectancy. I was offered an opt-out and I refused to take it. So, I’ve brought this all upon myself and my family. I’ve made my own bed and that’s where I must lie. I deserve everything that’s happened to me and I don’t deserve any help.

And because, for all the unborn Benjamins out there, I need to prove I can do this. I have to keep up a façade that everything’s perfect, because anything else would be fuel to the already rampant fire that disabled people and their families are scroungers, burdens, and second-class citizens. That it’s perfectly justified and in no way discriminatory to allow them to be aborted up to birth.

In other words, because I’m proud. People want to help, but I don’t ask and I won’t let them, because I fear their unspoken, “We told you so.”

I shared these feelings with some fellow parent bloggers and found that – while few were in the position of a prenatal diagnosis – many had experienced similar feelings. “I knew the chance of having twins was higher with IVF, so I felt I couldn’t ask for help when they arrived.” “My previous pregnancies were risky, so by deciding to have another child I had only myself to blame if anything went wrong.” “When I fell pregnant for the fourth time my mother told me I should have an abortion … I feel I can’t ask her to look after the kids now because she will think it’s my fault for having another child who now has so many appointments.” “I struggle to ask for help as I feel the need to prove the naysayers wrong.” “Because I wanted him so much, he’s mine; my burden.”

IMG_20180725_223545_732.jpg

But, they also pointed out that, “Any pregnancy is risky.” “No-one knows what they’re going to get when they choose to have a child.” “Everyone who has children faces the possibility that their child may need extra help, support, care, or they themselves may need to support due to circumstances outwith their control.” And the wonderfully insightful Alison of Downright Joy simply said, “It takes a community to raise any child and your community are far better off for having your child in their midst… You and your child can give them an incredible opportunity to really value what it is to be human and live in community.”

I need to swallow that pride, don’t I? In being too vain to admit it’s hard, reluctant to ask for help, scared to show the ‘warts and all’ picture, I am also failing to show the beauty that Benjamin brings to our lives. I fought for Benjamin like I have never fought for anything before or since. But what’s the point in fighting for something if you don’t share it? Neither Benjamin nor his sisters belong to me; I don’t have exclusive rights.

How will the prevailing view of disability as something to be cured, shut away, or eliminated, ever change if we don’t give our families, friends, and neighbours the chance to experience disability and neurodiversity as things to be embraced, included, and learnt from? As normal. Families with disabled children need a village, and that village needs them too.

I did, after all, make it to my course this weekend. We were learning about inclusion (more, much more, on this in future posts). We learnt that the first key to inclusion is as simple as a welcome, a greeting. Many of us find it hard to greet disabled people. We don’t know how to say “hallo” in Makaton. We don’t know whether to make eye contact. We can’t look beyond the wheelchair. And such awkwardness stems, itself, from a lack of familiarity, from segregation and exclusion. It’s a self-perpetuating cycle – until we break the chain. By keeping Benjamin to myself, by trying to do it all myself, I’m extending that chain still further.

I want to share this letter written by Parents for Inclusion. I wish I, and my family, had read it before Benjamin was born.

“Dear Little One,

Welcome to the world! We are so glad that you have come. You have a right to be here and belong. You belong to your family, your community, your culture, your country, this world which we share together. How wonderful to have you here.

The people who love you may be feeling sad and scared and will need to cry away their fears. This does not mean they don’t love you and that you are not right for each other.

Like all children coming into this world you need to be loved and valued for who you are including any difficulties you may be facing. You need to be loved, touched, cuddled, smiled at, sung to, talked to, made to feel safe.

As you grow up you need to have fun and laughter, play and music, friends and people who are willing to listen and learn from you. Yes, you may need to have more help and support at times possibly all the time; but remember, the most important thing for you is to be included in ordinary life and for your life – long or short – to be valued. That is not different to any baby in this world.”

Yes, I deserve my beautiful boy … but everyone else deserves a part of him too. It’s time to break the chain.

More than carers

Last week we said goodbye to someone we will all – Benjamin especially – miss like crazy. But it didn’t start out that way.

I’m a proud person – I don’t like asking for help (my husband will tell you that’s an understatement).

I’m a private person – I don’t like having other people in my house. Especially not when I’m in my oldest pyjamas, haven’t cleaned my teeth, and last night’s empty wine bottles are still sitting on the counter.

I’m a helicopter mum – I don’t trust anyone else near my kids.

And I’m a perfectionist – I like everything done ‘just so’ (the aforementioned husband has long since given up loading the dishwasher).

So the thought of having strangers coming into our house first thing in the morning and last thing in the evening wasn’t comfortable. At all. But these people aren’t strangers any more.

I’m not talking about our professionals, wonderful though they are – the physios, the OTs, the community nurses, the visiting teachers, who pop in for an hour once a fortnight, into the pre-tidied sitting room, do their particular specialist task with Benjamin, write up their notes and get back to the office.

I’m talking about the agency and the private carers, who get up at stupid o’clock to cycle through the pouring rain while I’m still sleeping; who change dirty pads and sometimes dirty bedlinen, and wash bottoms, and brush hair, and dress Benjamin’s stiff little arms and legs; who take the trouble and the time to learn tube-feeding, and chest physio even though we are their only client that needs it; who bring birthday presents that cost more than they get paid to be here; who wash things up when I’m not looking and help the girls on with their coats when we’re getting late for school; who text me when Benji’s in hospital because they really care how he is; who raise money for us in their spare time; who become friends that I care about, and helpers that I could not be without.

DSC_0158

Love my birthday elephant (at least I think it’s an elephant? It’s got tusks. And stripy legs. Could it be a raccoon? But that nose… an aadvark?). Anyway, I love it.

There’s Cameron, just eighteen years old and the best-dressed young man I have ever met, who arrives on the dot at 7.15 to make sure Benjamin is turned out equally perfectly each morning, turns a blind eye to the girls hurling cereal around the kitchen, and keeps me up to date with the East Lothian gossip.

_20181130_232129

Thank goodness Cameron did my hair this morning

There’s Amanda, who whispers sweet nothings to Benji as she takes off her own shoes and socks and rolls up her trousers to shower him. He literally purrs as she washes his hair; you can see his whole body relax in her presence. She’s the kindest and most selfless person I know, and I can’t believe we are lucky enough to have her in our lives.

_20181130_232047

There are others too, Christine, who always made Benji’s bed up neater than in a hotel before she could leave, and Julie, who cycled through rain, wind and snow to get to us and still always asked how I was each morning, and Susan, who would do the ironing if she had any of her hour left over.

And then there’s Tracy, who we sadly said goodbye to after being with us from day one; who was way more competent than me at every aspect of Benji’s care from washing and dressing to feeding and medications. She drove all the way from the Borders to put Benji to bed while we bickered over our spaghetti bolognaise. Every time the doorbell rings, Caitlin jumps up hopefully shouting “It’s TRACY!” She will be sadly missed and I hope we keep in touch.

IMG-20181119-WA0001

Did you say Tracy was coming?!

I have no idea why these people do what they do. They work unsociable hours, deal with all manner of bodily fluids (at least in this house), are generally ignored while the rest of us rush around getting our own selves ready for the day or eating our dinner, and are paid peanuts (if they are paid at all: if we cancel with even a few moments notice, even if they are already on their way to our house, for instance if Benjamin goes into hospital suddenly, the agency carers are paid nothing).

Swallowing my pride and baring our struggles to a social worker to get our eight hours care a week was one of the best things I ever did for our family. We have all got completely used to having people in the house (perhaps too used to it; I gave Amanda a bit of a shock by stripping down to my underwear to put my clothes in the washing machine the other day), that without them the evenings seem quiet, and the mornings, well the mornings are just chaos. Having people help with Benjamin at the critically busy times of day allows all our children to get the care and attention they deserve. It means we sometimes even get to school on time. It’s brought us new friends and a new perspective on our local community. And it’s a good incentive to buy some new pyjamas.

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.

429954_253895268030061_1225564724_n

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.

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.

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.

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.

IMG_20180621_140332_073.jpg

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.

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?

_20180502_145057.JPG
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?

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).

DSC_4532.JPG

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.

IMG_20171218_200840_123.jpg

On the mend