Precarious

Earlier this week I looked after Ben on my own for the first time in three months. While James was out with Molly and Max, for just over an hour, it was just me and Ben. We did some schoolwork, then I got him changed and back into his chair, started his dinner and we read a chapter of our latest book. It was an entirely routine afternoon, only made remarkable by the fact that I haven’t been able to look after him like that since the beginning of March before I broke my ankle.

It has been strange that lockdown has coincided so neatly with my ankle recovering from being pieced back together by surgeons. In some ways it has been convenient – I haven’t had to work out how to take the kids to school on crutches, or reject invitations to meetings, because there has been nowhere to go and no-one to see. On the other hand it has been difficult because we have had three children at home and I haven’t been able to look after them in the way I usually would – most markedly for Ben. Max and Molly don’t need much physical help – in fact they have often been helping me – but Ben relies on the physically ability of others to be moved, fed and changed, and I haven’t been able to do that.

It has been deeply frustrating. Luckily with James and visiting carers (with the attendant hand hygiene, new protocols and PPE) we have made it work. Ben has been okay, but I don’t like it. I want to be a hands-on parent taking care of him and helping him do the things he enjoys but the ways in which I want to use my hands are, I have discovered, highly dependent on the stability of my ankle and my ability to walk and stand. I could read Ben books thoughout, sit next to him and keep tabs on whether he was being fed or not, but it wasn’t the same. It hasn’t felt like enough.

WhatsApp Image 2020-06-07 at 14.51.22

It’s made me realise how precarious my physical ability to look after Ben is, and that has been set against the precariousness of Ben’s normal life in general. I knew something about the fragility of my body – I have recovered from two caesarean sections and lower back problems which have each meant periods where I couldn’t look after Ben on my own – but I had settled into a naïve belief that the support that surrounded Ben was secure. Until it was all stripped away by the ramifications of Covid 19. At the exact point that my ability to care for Ben was reduced, everything else also stopped and James and I needed to not only be his parents but also his teachers, therapists, friends and carers.

IMG_1999

I know that everything has tumbled for everyone – we had all built lives that were dependent on friends, colleagues and professionals – but Ben’s more than most. Some support can be substituted remotely, but it’s not the same. Ben has learnt to zoom call his teachers, and we have sent photos to his therapists so they can review his position. He’s having music via videolink, and we send photos of completed work to school. Many of his carers have been able to keep coming, and we have been gratefully dependent on their help to not only care for him but also to attempt to educate him, but none of it is a substitute for him being at school. Max and Molly are also missing all of the benefits of formal education but we can more easily compensate. There are losses, of course, but they don’t feel as acute to me.

IMG_2315

And yet with a realisation of the precariousness of it all, comes an appreciation for all of these people who prop up our lives and the stability we enjoy. My naivety was a luxury – I hadn’t realised how delicate Ben’s normal, day to day, life was because he is usually so well supported and I had forgotten the physical demands of caring for Ben because I had had the benefits of my body allowing me to do it effortlessly.

IMG_2286

IMG_1673

It’s not all bad. In these last three months, Ben has never spent so much time in the hammock, or been read so many books, or been hugged and kissed so consistently by his sister (our fears about ruining their relationship forever by forbidding her from touching him when she was ill unfounded). He now knows significantly more about Thunderbirds than he did, and he is sleeping better than ever. So pros and cons. I suspect our children will remember this period fondly once they are reunited with their friends, family, teachers and therapists (or actually anyone that isn’t me and James). They probably won’t remember this period as a loss (though Max will take a while to recover from not being allowed to see his friends). As we rebuild all of the connections and relationship that are the foundation of Ben’s normal life, I will notice how valuable all of those people are and hope that we never notice just how precarious our dependence is again.

IMG_1501

New School

We are coming out of the post-surgery haze. Having come out of hospital one week after the operation, Ben started at a new school exactly two weeks after surgery. We had feared that he wouldn’t be well enough and might miss the beginning of term, so it felt like a huge win to get him there in one (slightly bruised, stitched together) piece.

IMG_1460 (1)

James has taken a significant chunk of time off work so we have had the luxury of introducing Ben to school slowly, calmly, with both of us around to make it work. We have been able to take him in together, learning how to drive into central London without killing a cyclist or getting embedded in a stationary traffic jam, and pick him up early. Max has come in with us and got to know the new school. We have all been able to meet the staff and see where Ben spends his day. It’s all been significantly less stressful than I anticipated.

It’s not all been plain sailing. Until earlier this week Ben had periods of profound unhappiness which couldn’t be resolved with paracetamol, or ibuprofen, or TV, or books, or lying in bed. There are few things more sapping than spending four hours with a child who is really unhappy and being apparently incapable of making things better. Maybe he had a headache (there is, after all, stuff in there that wasn’t there before), or a tummy ache (ditto), or the wounds are uncomfortable, or he’s just really bored of being with us at home. Not fun. But if someone told me pre-surgery that Ben would start at school two weeks later and be largely cheerful (or at least not miserable), I would have taken it.

He’s now done two weeks and he isn’t just putting up with school, he is really happy. As we walked in on the first day, Ben was all smiles. He has loved school thus far and he knew he would enjoy it, and he was right. That is partly because he likes learning and the variety of a school day, and partly because it’s an excellent school. James and I were far more nervous than Ben, but the staff are so obviously capable, receptive and skilled that we have had no choice but to happily leave Ben there and go for lunch in Clerkenwell or take Max to the Museum of London, again.

I’ve described before the importance, and marvelousness, of one’s disabled child going to a really good school. We have been fortunate enough to find two. Ben has moved schools because we, and the professionals working with him, felt he would benefit from more specific and specialist input so he has moved from a school for children with a range of special educational needs to a school for physically disabled children. He, and we, loved his previous school and were sad to leave. We all made very good friends there and Ben was lucky to be taught and supported by lovely, skilled people for two years. Saying goodbye to them all involved a lot of weeping, for once not just by me.

As part of leaving, Ben got his last school report. We spend a lot of time reading expert reports about Ben that are, necessarily, factual and focus on problems. Ben’s report was the exact opposite of this – hundreds of words of enthusiasm and celebration. It was a joy to read and was written evidence of the can-do attitude of his lovely teacher. Forgive me as I quote some of my favourite bits – comments that could only be made by people who have taken time to really get to know Ben and see past the immediate obstacles to communication and learning:

report 3

‘Children and adults are drawn to Ben’s fun friendly nature and positive attitude.’

report 4

 ‘One of Ben’s many lovely qualities is his empathy. If another pupil receives praise or is celebrated for an achievement Ben will start to beam and become very excited.’

report 6

 ‘Ben can communicate with adults using his communication board, his PODD book, symbols or just by gesture.’

 ‘Ben has really flourished with phonics activities this year, and with the continued support he receives from his family he has excelled in this area.’

report 2

report 1

We are incredibly proud of him, so pleased he’s had such a brilliant experience of school so far and so thankful for such talented teachers and assistants. What a geek! Like mother (and father), like son.

Brain surgery

Ben had brain surgery last week. It was an elective operation, in which electrodes were inserted into his brain. These are connected to a battery pack about the size of a cigarette packet on the right side of his tummy. The idea is to try to reduce his dystonia and therefore give him a bit more control over his body. It’s called Deep Brain Stimulation.

IMG_1365

Ben spent a week in hospital after the surgery. He was discharged yesterday and is now back at home – recovering well but still in discomfort. We are relying heavily on paracetamol and films.

We chose for Ben to have this surgery. We entered in to it open-eyed – we knew the risks and we knew it would be hard. We hope that the benefits of reducing Ben’s dystonia, and therefore his disability, will outweigh the pain and disruption of the procedure. We thought hard about whether the gains would be enough to compensate for Ben never again being able to trampoline (in case the wires that now run down his neck snap), and not being able to swim for three months.

Having a child go through major surgery and recovery sends you into a hole. The intensity of the emotion and the level of care required is enormous and exceptional.

It feels all wrong to spend your child’s life taking so much care over who looks after them – we have never previously left Ben with anyone except trusted family, carefully chosen carers, at nursery or at school – then leave them with a group of doctors and nurses who you have only just met, and who are going to do unthinkably invasive things to him while he is unconscious. These places are so weird – full of people for whom this is all in a days work, while James and I are reading Ben knock-knock jokes and trying to convince him and ourselves that everything is going to be okay.

The six hours that Ben was in surgery felt like being in the eye of a storm. Everything calm and controlled, but filled with anxiety and waiting for the call to say he was in recovery. I tried not to dwell on the thought that if Ben’s brain was damaged for a second time I would never forgive myself. Then the call comes, and in we go, and the storm sweeps across us all.

We only really emerged from the swirl of hospitals, and cannulas, and exhaustion yesterday. Here are a few thoughts as we come into the light.

Rotas

When Ben has been in hospital previously, we only had one child and this time we had two. This made a bigger difference to our ability to cope than we expected. Someone who knows Ben well needed to be with him all the time – partly because he was sensitive and sad, mainly because he can’t communicate with anyone who doesn’t know him beyond crying. I had created a rota on a geeky spreadsheet to ensure there was always someone with Ben and someone with Max, but the reality of organising it was so tricky.

The easiest solution was to largely have me or James, or both of us, with Ben and for Max be with family and carers. We knew he’d be confused and annoyed, but hoped new Playmobil pirate sets and promises of cake would get him through. And it did for the first few days. Then, he realised that he hadn’t seen his dad for three days and Ben wasn’t at home. He didn’t understand why last week he’d been on holidays with the four of us hanging out all day, but now he never saw his parents in the same place, his brother was in this mysterious hospital place, and we kept trying to offload him on other people. He was so confused. At one point the fact that both of our kids were struggling nearly broke me. Things improved a bit once Max started visiting Ben at hospital, realised he wasn’t too far away and just looked like Mr Bump, and found out that hospitals have not only play rooms but also cafes that sell croissants.

I am raw to Max’s feelings about all of this. He shows such insight and accommodates so much. On the day before surgery, he asked where we were going to be while he was staying with my sister. We explained (again) that we would be at the hospital with Ben, that he was having brain surgery, that we hoped it would help Ben control his muscles. His first question was, ‘Will Ben be able to eat after the surgery?’. No, he won’t. But the three-year-old is asking all the sensible questions. Be still my heart.

Pulling together

I’ve said it before, I’ll say it again. Our family is kept on the road by us all pulling together. For eight days I have spent up to 15 hours in a small room of a hospital. Sometimes with company, largely on my own with Ben, reading The Twits for the sixth time and eating fondant fancies for lunch because I can’t leave Ben for long enough to buy a sandwich. It’s not been that much fun.

But being James has been quantifiably less fun. James did six night shifts with Ben in a row. We were meant to alternate but the kindness of my husband and the frequency of my tears led to him doing every night. These were nights of Ben being miserable, almost no sleep, frequent observations and intravenous antibiotics. This last week, our family has been kept together by this man.

IMG_1387

Ben and James developed an amazing kind of symbiosis from spending all of these hours together in adversity in a small room. By the end of last week James knew what Ben wanted or needed from the smallest facial gesture or the subtlest wriggle. He knew when Ben wanted to be held, or how to get him to sleep. Oh man, these boys of mine.

Meanwhile, our families have been at our beck and call. My sister Maddy has once again proved that her capacity to sit in hospital rooms for hours is one of her most valuable skills (photo below of Ben and her just before his surgery). Along with looking after Max for days despite him almost continually insulting her.

IMG_1344

It will be okay

So here we are. We’re on Day 9 and Ben is well as he could be. It’s all held together with Calpol and constant entertainment, but we’re home.

A few weeks before the surgery we had a party to celebrate our new house and summer. It was our normal combination of friends, prosecco and semi-naked small children. Uncle George brought his decks and at some point before bedtime he played this song: Can’t Do Without You by Caribou. James and I went to Latitude Festival in July and we arrived, via horrific food poisoning, an emotional final assembly at Ben’s school and six hours of Ipswich traffic jams, to Caribou playing this song on the main stage. I love it.

As we then danced to this song in our garden at our party a few weeks later, with James holding Ben and Max jumping around, I had a moment. A little bit of clarity that Everything Is Okay – Ben is happy, our family is amazing, and we can all dance together at a party with our friends on a summer evening. I imagined looking at us from the outside and thinking ‘they look happy, that little family of four’.

As I sat in the hospital room when Ben was in surgery I listened to this song. As I stood in our kitchen at midnight during the last week, having just returned from the hospital but needing to make Ben’s meals for the next day before I could go to bed, knowing that I needed to be up at 6.30am to get back to Ben and James, I played this song. I imagine that many people associate this song with taking drugs on dance floors, but it’s become my anthem of Deep Brain Stimulation. I absolutely cannot do without my little gang of boys, we just need to get through this little patch of discomfort.