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

Limping through lockdown

It has now been over four and a half weeks of us being at home – at first in self-isolation because Molly was ill, then in the typical lockdown that everyone is doing. It has been over five weeks since I slipped on a small hill in a kids’ playground and broke three bones in my ankle. Tomorrow will mark exactly five weeks since I was wheeled into surgery, telling James I would see him in two hours, only to return five hours later with three metal plates and ten screws in my very swollen ankle.

I was discharged from hospital two days before Molly got ill and so our lockdown is inextricably linked with my ankle injury and my often clumsy attempts to manoeuvre myself around on crutches, bearing no weight on my left leg. Having a leg in a cast was not ideal preparation for having three children at home, all the time. Yet, when I was first in hospital the thing that upset me the most was being separated from my family. I was so lonely and all I wanted was to be in my own house with my children. So in some ways all my dreams came true!

Once I could leave my bed, my inability to move, carry or help has been difficult and it has felt like the worst timing because what we could do with now, more than anything, is two adults who can both look after our children. My incapacity meant James doing everything, for all of us, for weeks and it was a lot for him. More than once when I tried to be helpful and independent, I fell over. I have found it incredibly frustrating. I am unused to dependency and have found it hard to rely on nurses, my husband and my children for the most basic of my needs.

But in some ways I injured myself at the best possible moment. We had bumped into a friend in the playground just before I fell and so she distracted Max and Molly while I worked out how to get myself to A&E. I had delivered a massive work project the day before I injured myself so it has been okay that I haven’t worked for a month. James had returned from a work trip to Canada two days before I was admitted to hospital. I was discharged from hospital just before the pandemic took full hold, and my limited mobility is less of an issue since I’m barely allowed to leave my house.

We have bought me a one-legged scooter and so I can now prop my healing leg on it and potter around the house. I can cook, and carry things from one place to another without needing to pack them into my rucksack. I have made it out to the garden and have played an extremely amateur, ridiculous, game of seated volleyball with Max. I have been reaping all of the benefits of a house without steps, with doorways wide enough for a scooter, and a lift that takes me to my bedroom. I have been so grateful for the mobility aids that have allowed me to move around and increasingly parent my children. And yet I am so resentful that I can’t use my legs like I am used to. It’s been a surprise to find myself dependent on crutches and a scooter and I struggle to reconcile my long-standing belief that mobility aids are freeing, not confining, with feeling incredibly constrained, all of the time. I hope this is more a process of change management in my own mind than latent prejudice against disability, but it’s hard to fathom my own thoughts when I have only left the house twice in a month and we’re in the midst of a pandemic.

Because obviously the pandemic weighs heavily. When Molly was ill, we attempted to self-isolate her and Max from Ben, so after years of encouraging our children to touch, kiss and cuddle each other we had to stop Molly going near Ben in the house. It felt necessarily but wrong. Max stopped sleeping in the same room as Ben. We still had some carers coming to spend time with Ben, and we had to tell Molly and Max not to go downstairs when they were here. After years of encouraging an ease around Ben and his carers, we had to police everyone’s exposure to each other, spraying cleaning fluid in their wake. It was heart-breaking. I’m not sure how long it will take for us to undo our policing of touch.

As Molly entered her second full week of illness, it seemed like Ben was in a vulnerable category and we tried to work out what we would do if he got ill. We spoke to Ben’s lead consultant and he suggested a plan which made us feel reassured, but we were on tenterhooks every time Ben coughed or grimaced. Somehow he has so far remained unaffected, and now we are all healthy, touch wood. It now seems like Ben no longer officially counts as vulnerable, though who knows, and there is only so much we can do to keep him safe. We remain vigilant, nervous and concerned.

In the midst of all of this, I scoured the internet for guidance about how we should manage carers coming into the house. Not having carers was not an option given my inability to look after Ben and James needing to look after all five of us. I cannot push Ben’s wheelchair or move him between his chair and his bed. I can barely change him without wobbling perilously and can’t get to him in the night in any kind of timely fashion. So we came up with our own version of guidelines for how we would manage the risk, long before the government produced anything helpful.

I noticed news reports that told us, with a tone of reassurance, that many of the people who died had underlying health conditions. I knew that is how Ben would be described. I was relieved that children did not seem to be among the worst affected, but then there were reports of child deaths, and plenty of other people to still be worried about. When NICE published guidance setting out how access to critical care would be managed, I noticed that it was on the basis of frailty, and that according to their criteria Ben would be frail. I realised these criteria didn’t apply to children, and I was both relieved and still stricken, because Ben will one day be a disabled (apparently frail) adult, and we have friends who are disabled adults. I am still shocked that a formal, public document set out the ways in which a disabled person’s access to life-saving treatment would be considered rather than assumed. It was later edited to say the guidance should not be used with younger disabled people, but why did it take outrage to prompt that clarification? Of the many things I never imagined before COVID-19 appeared, I didn’t think I would ever worry whether my child would have to compete for medical attention and whether his disability would count against him if he did. 

I’ve barely articulated any of these thoughts because I am mainly aware of our luck. We are currently healthy, in a large house with a garden where we have time to appreciate the tulips. We have offers of supplies and the money to buy them. I have a husband to help, and subscriptions to streaming services. We have as much hope as anyone else does of home-schooling our children, albeit with the colossal pressure of being not only Ben’s teacher but also his physiotherapist, occupational therapist, speech and language therapist and support system. 

We could be in a much more difficult situation, and I know many are. We are okay – letting our kids watch marginally inappropriate films, making and eating too many cakes and wondering how to get any work done. We are more fortunate than many, yet each morning I remember that this crisis has laid bare an assumption that Ben’s life might be, if not now then in the future, a little bit less valuable than someone else’s and I just hope that we are going to weather this storm and then come out fighting, with strong ankles perhaps.