Responsibility

If you’re a parent, you may remember that feeling of arriving home from the hospital, putting baby in his/her car seat down in the middle of the room, and realising, Shit, I’ve got to keep this thing alive. With Benjamin, that’s an experience that happens over and over again.

The more hospital stays he has, and the longer they last, the more I get used to relying on the medical staff to keep track of his feeds, measure out his medications, monitor his temperature. I start to depend on his sats monitor to tell me if anything’s wrong, to let him lie around in his vest because I know it’s warm on the ward and his temperature is being checked hourly.

When we are discharged, late in the day, with an hour’s journey ahead of us and a whole family to feed and put to bed, I’m terrified I’ll forget something, miss something, or make a mistake. After each admission I have to get my head around new medications, changed doses, a new feeding regime, and a barely-recovered child.

This time, having been discharged once only to be readmitted for another fortnight, I had even more fears than usual. Normally I’m desperate to get out but this time I refused to take Benjamin home until he’d gone 48 hours without vomiting – which he very nearly managed a few times before vomiting at the 47th hour. When he finally did, acknowledging that I’d likely be just as nervous no matter when we took him home, I agreed to face it sooner rather than later.

The first feed back at home, he vomited straight back at us. The terror started to tug at my throat: it was happening again. He’d end up dehydrated, unresponsive, swollen, on a drip, maybe worse. After a month in hospital, stretching our family to breaking point, I couldn’t bear the thought that we might have to go back.

For two days we struggled as he vomited back more than half of his daytime feeds. I barely slept in case he was sick in the night. I spent an hour over each feed, trying to slip the milk down slowly without his stomach registering it, then an hour hovering over him … then an hour cleaning up. I approached each feed with trepidation, stomach churning, hospital bags ready by the door.

I feel like I always make the wrong decisions, especially when I have to balance the needs of the rest of the family, the disruption it causes the girls when Benjamin is in hospital. I rush my kids to the doctor only to be sent away with a flea in my ear and a note on file: ‘over-anxious mother,’ yet I carry on at home when we really should be on our way to A&E. I long for an objective observer to tell me what to do; but no-one knows Benjamin as well as me. Ultimately it has to be my call.

Thankfully, this time we had a halfway house – our wonderful children’s hospice, where we were due to go for a weekend break. I had been desperately looking forward to this as a chance to rest and be spoiled; now it became a place of safety too, somewhere with trained medical staff to share the responsibility and the decisions. I vacillated up until the moment we were due to leave. I phoned the hospital. I phoned the hospice. I packed, unpacked and repacked. I spent the journey phoning our dietician (I wasn’t driving). I fully expected to have one cup of tea and be sent packing to the Sick Kids.

But for once, it was the right call. For once, instead of getting worse, Benjy started to get better. In fact he pulled the usual stunt that he pulls at Rachel House, of sleeping all night and being no trouble to anybody so that I felt a complete fraud even being there!

The main factor in Benjamin’s turnaround was a step backwards, a step further away from ‘normal’ and closer to ‘medicalised’: we switched his feeds from three ‘meals’ a day to one long, continuous feed using a pump. It was at my request and I think it was another good, though dispiriting, call. I’ve been here before: I recognise that feeling of relief tinged with disappointment from when we finally gave in to tube-feeding instead of bottles. Now, it’s relief that Benjamin is getting the nutrients he needs and keeping them down, that he can stay at home with us and away from the monitors and needles; and disappointment that he no longer experiences breakfast, lunch and dinner like the rest of us, that he’s hooked up to a tube day and night, harder to cuddle, harder to play with.

But that’s a small price to pay, and it may yet be only a temporary one. Benjamin’s still not well; he’s tired, he’s flat, he’s pale and he’s sore; there’s a long road of appointments and interventions ahead of us to work out exactly what went so wrong over the past month and how we can rectify it, but for now we’ve found a way to manage it and to keep him at home where he belongs. The gnawing panic in my stomach is – slowly – ebbing away. The responsibility is firmly back with me, but I can handle it.

wp-1467753672990.jpg

Back in my own bed (‘Mummy, I’m okay, you can turn the light off now’)

Advertisements

To those who say my son is a drain on society

It’s about a year since I wrote a post for Scope about my disabled son, Benjamin, whom we decided to keep despite being offered a late termination of pregnancy. Amongst the many supportive comments on the post was one (swiftly removed by admin) that stuck in my mind: a comment berating me for my selfishness and the expense Benjamin would cause to the taxpayer. Benjamin’s recent stay in ICU – at an estimated cost of perhaps £10,000 (estimate based on this article) – brought this back to my mind. In fact I’ve heard variations on this opinion several times, perhaps increasingly in today’s political climate: that disabled people are ‘a drain on society’ and those of us ‘lucky enough’ to have the opportunity should prevent them coming into the world.

As new genetic tests become available, it is becoming more and more possible to do just that – for instance, as the NHS considers rolling out a non-invasive prenatal test for Down’s Syndrome (as well as Edwards syndrome, Patau syndrome and Turner syndrome), many are voicing concerns that it is being presented as an opportunity to ‘eradicate’ Down’s. As Hayley Goleniowska puts it in her blog, Downs Side Up, ‘I fear Down’s Syndrome is just the very visible tip of a much larger iceberg, with adults with non specific learning disabilities now being swabbed to look for genetic patterns to enable earlier diagnosis [and termination].’ Discriminatorily, for disabled babies there is no legal limit in the UK on abortion before birth although the limit for non-disabled babies is 24 weeks.

Quite apart from being frankly insulting to the millions of disabled people who contribute fully to society in every way on a daily basis, the premise that even the most severely disabled are a ‘drain on society’ is built upon a fallacy: that society is fundamentally about money. Taken to its logical conclusion, the moment any one of us is hit by a bus, contracts meningitis, enrols at state school, or wants our dustbin emptied, according to this argument we become a drain on society.

The word ‘society’ comes from the Latin socius (companion) and was first found in English in the mid-16th century meaning ‘companionship, friendly association with others.’ Society as thus defined is based on give and take. Yes, Benjamin receives disability living allowance from the state. Yes, in his first two and a half years he has received more healthcare input than we would have liked. Yes, his education may cost more than that of other children. But Benjamin gives hugely in other ways. No one can fail to be brightened by his smile, relaxed by his hug. The determination with which he tries simply to reach out and touch something that has caught his interest could teach many of us a thing or two about persistence. He has certainly taught me about priorities, principles and prejudice. He makes me acutely aware of the state our society is in, and more dedicated to making it better. It is no coincidence that disabled people, their families and carers are often the ones campaigning for social justice, battling against climate change, fighting discrimination in its many forms.

Benjamin will never get married or hold down a job. He will never start a business, own a house or vote in an election. He will also never get drunk and cause a multi-car pile-up, hold up a shopping mall with an AK47, or evade his tax bill. But his life has value, his voice should be heard and his needs should be met, because that is what society is all about.

I am very aware how lucky we are to live in a country where society, on principle and in practice, provides help with the extra needs associated with being disabled or caring for a disabled child. But believe me, families like ours are far from living a life of luxury at the expense of the state; nor do we enjoy being dependent on it. Benjamin’s specialist bed, bath chair, even his toys, are second-, third- or fourth-hand, and go back into stock to be used by another child when he outgrows them. For his feeds and medications, we make do with the same number of syringes in a month that a hospital would use in one day! Benjamin is too young to receive nappies from the continence service, but when the time comes we will receive perhaps half the number needed to keep him comfortable; the rest we will have to buy. I hesitate to speak for other families, but I suspect that most of those in our position are proud, even stubborn, and as a consequence extremely resourceful. Our dignity and that of our children is precious, so we tend to explore every avenue before finally turning to the state. Furthermore, a recent campaign has highlighted the extra costs of being disabled: costs over-and-above those borne by the state. Thanks to society, living with a disability has been made easier, but it is still harder than it should be. Choosing to let Benjamin live was never the easy option.

It is often said that the measure of a civilised society is how well it looks after its most vulnerable members. Benjamin shows us all that is good about our society, and all that can and should be improved. I cannot fault the care he has received from the education, health and social services, nor that from charities such as the Newlife Foundation, Capability Scotland and our local children’s hospice. We would not be where we are without the support of friends, family and neighbours. But there is a long way to go until our whole society values people like Benjamin for their true worth and doesn’t disparage them as a drain on resources.

Giving Benjamin a chance was the right decision for him, for his family and for society. Anyone who thinks otherwise should come and meet him; they might just change their mind.

Acceptance, accessibility and attitude

I am fortunate to have an incredibly understanding, flexible, patient employer. They have allowed me to cut my hours down to almost nil; I am secure in the knowledge that I can increase those hours again when my caring commitments allow; I am kept abreast of developments in the workplace; and I am welcomed with open arms every time I – and one or more of my offspring – deign to make an appearance in the office.

So when I was asked – I’m not sure if it was ironically or strategically – to take part in a committee focusing on gender equality in the work place, I was very happy to contribute. The first test of equality I proposed was that the only way I could make committee meetings was to bring Benjamin with me…

So, we toddled off into work. People held doors open for us and offered to carry the buggy up stairs. I parked Benjamin in his buggy in one corner of the board room. We received just the right amount of cooing to make me feel special but not enough to disrupt the meeting. Everyone politely ignored Benjamin as he snorted, coughed and grunted his way through the hour (fortunately he didn’t cry). I was enabled to contribute to the meeting and to care for my child.

Afterwards I popped in for a quick chat with my line manager. Benjamin threw up banana milk all over her office: she didn’t bat an eyelid and even asked if she could give him a cuddle afterwards.

**

There are three rail companies running on the line between my home and my office. I was unfortunate enough to catch a train home on the least accessible one. I struggled up the high step into the train with the buggy. I parked it in the wheelchair space because – although it’s an ordinary buggy not a wheelchair or an official special-needs buggy – it has been specially adapted for Benjamin by a wonderful engineer called Derek at Wheelchair Services. He (Benjamin, not Derek) is safer and more comfortable in it than on a rail seat or on my lap, and it is the only place I can safely sit him if I need my hands free to tube-feed him.

So, I argued with the guard who insisted that my “buggy” should be folded and moved to a different coach. I blushed in front of the other passengers witnessing this argument but probably not hearing the ins and outs of it and thinking I was just an obstinate mother. And then I stood, wedged against the back of the seat in front, to administer his tube feed, because train-designers clearly do not think that disabled people deserve to sit next to or talk to anyone else while on a train, but position them on their own, with only the luggage rack for company.