The Coronacoaster

“Honestly, I think you’ve got it harder than anyone I know” my friend said sympathetically to me that afternoon, some months ago when I began this blog. Her words gave me permission to wallow in a brief, but extremely gratifying, soup of my own self-pity, it was delicious. Poor me. The sympathy was aimed at our predicament of being in lockdown with Cali, my six year old child with full Edwards syndrome, and “A”, my four year old daughter.

I had rung her up to rant about my life, how hard it all was, how it felt like we would be shielding for many months to come, how if testing had been running for key workers two weeks ago Cali’s PA, who has almost certainly had the virus, could have been tested and then might have been able to return to work with Cali again. But at the time, testing hadn’t been available, and so there we were, trying to manage, having lost every scrap of outside support.

I told my friend how Cali has taken nearly 6 weeks to recover from what had only seemed a moderate cold, and how since her recovery she’d started to drop her sats during the night to the low 80’s. So, on top of all the other things that already interrupted our sleep, we were now being awoken an extra two or three times a night by the sats monitor shrieking raucously at us. 

Although my friend’s sympathetic words were momentarily party poppers for my personal pity party, I knew that we didn’t have it that bad. Lockdown has been incredibly hard at times, but I am also aware of all the things I have to be thankful for and all the ways it could be worse. 

I work with disabled people and carers who receive Direct Payments. At the beginning of lockdown we rang all our clients and I spoke to many people whose situations left me full of fear for them. People who are not just disabled by their impairments, but also by lack of money, inadequate housing, poor English, lack of access to information and lack of choices. I work with people whose mental health is taking a battering from loneliness, and with people with learning difficulties who don’t understand how to keep themselves safe. Many people have had their carers in right through the apex of the pandemic, putting themselves at significant risk, because they wouldn’t be able to manage without.

Regular contact with people who have a more difficult lockdown than myself has been helpful to keep me from too much self-pity and has highlighted the many things I have to feel gratitude for. As the weeks have passed it’s become increasingly clear that both covid and lockdown often hits hardest the poorest people and those with the most limitations on their lives.

The early weeks of lockdown were, however, quite traumatic. As well as trying to adjust to the situation with all support gone, Cali was also unwell and needed a lot more care than usual. We were worried that hospitals would be overwhelmed and would turn Cali away. We were also worried that if she was taken to hospital she would then catch the virus. We were exhausted and also slightly crazed, as surely everybody was, with the surrealness of finding ourselves living in a pandemic. It took four difficult weeks and two sets of antibiotics before Cali seemed to be mostly better. It was only then that we were able to start adjusting to life in lockdown.

Once Cali was better I started feeling like we were managing again. We started enjoying our time together and to go out for cautious outings. I have a great pile of happy memories from the last few months which include both girls’ birthdays, a sponsored walk for the hospice, treasure hunts, walks in the woods, doorstep chats with friends and a very special trip to the Wye Valley. Lockdown showed me how much I enjoy my family’s company, and C and myself are more collaborative than perhaps we have ever been as parents. For some time I was the sole earner which forced us to shift into each other’s former roles, and this helped us find more understanding for our respective challenges. Whilst lockdown has been hard, boring, frustrating, scary, anxiety inducing, weird and lonely, I can’t ever imagine feeling closer to my family than I do at the moment. Lockdown and the old coronacoaster, like my experience of mothering Cali, has felt wonderful and very difficult at the same time.

Now we are over three months in, and the end of shielding is in sight (you can tell how long this blog has taken to write). I’m worried about how safe it is going to be for families like ours as the country opens up again and shielding is paused. Despite the fun we’ve had, I now feel I am languishing in a lack lustre state of lockdown lethargy, I feel I need some change, I want to go charity shopping and choose my own fruit and veg, I’d like to hug my friends.

One of my greatest challenges during lockdown continues to be the sense of frustration I often feel on my days alone with both children, this is because I don’t feel I can meet both of their needs well enough. If you have two children, one of which is medically complex, who needs support with almost everything, this won’t be news to you. Just getting Cali up in the morning takes forty minutes or so. Then there’s syringes of food to prepare and give, nappies to change, tubes to suction, vomits to catch, medicines to draw up, hearing aids to put in, hearing aids to hunt down after they are flung across the room, hearing aids to put in again... And this is just treading water, ensuring Cali’s most basic needs are met. We also try and give her a varied day which includes exercise, vitamin D, play and an opportunity to connect to her parents and sister. Very little of this is simple, getting her trussed up and strapped into her standing frame takes an eternity. Even putting her in her supportive seating can take a while - that damned vest to clip on, the elusive straps to tease out of crevices in the chair. 

Cali can’t move about, see far or hear well (especially when the hearing aid has been hooked out and flicked away) so I can’t communicate with her by talking across the room as I can with A, or presume she’ll follow me upstairs. I may position her chair next to me as I do things but if I don’t lean in and talk to her I might as well have left her next to a brick wall. Communication is all or nothing with Cali, and all too often it feels like it’s nothing. My attempts at home schooling have also been fairly unsuccessful. Cali needs lots of time and familiarity to get into any activity and so trying to do a “quick” session seems to generate nothing but unresponsiveness in Cali. Sometimes it seems she needs to shake her head and grumble for half an hour before she’s even able/prepared to get involved with an activity. And yet I get little flashes of her capacity to learn when I am able to be stay with her long enough which makes me sure if I had more time and patience that Cali would be learning more. 

I have to try and balance Cali’s needs with the pretty constant needs of my other daughter, who struggles having a sibling she can’t play with and often seems to want me to be mum and sibling at the same time. Her games are easy to generate and can be quick but they rarely have a place for Cali in them. Feeling torn between their needs often leaves me feeling grumpy and overstretched with a guilty feeling that neither of them are getting the best of me. 

Accepting my limitations as a mother to two very different children is one of the lessons I am still learning. It feels like part of the reason we manage the intensity of parenting young children is because we know that it’s not forever. Most children are edging towards independence from the day they are born but this is not the case with children like Cali. Children who are affected by Edwards Syndrome to the extent that Cali is will never stop needing their parents there to provide everything for them. With her intense physical and educational needs, as well as the necessity to be close in order to communicate, lockdown has really shown me how much Cali, as well as her parents, needs school and other forms of support in order to give her enough attention and variety and to help her learn new things. 

The plus side is that if she is given the right toys and activities Cali can self-entertain for long periods without apparent boredom. To finish I have shared 11 of her favourite activities in case you are in need of ideas for how to keep your precious trisomy child entertained, whether or not there is a lockdown on. Check out the blog post '11 of Cali's favourite activities.'

Sending lockdown love and hoping that some of this will be helpful for you.

Best wishes

Jay