In this New Year’s blog, parent carer and campaigner Bev talks about navigating celebrations as a carer, and the fact that COVID lockdowns will hopefully help other families understand the isolation many families with disabled children experienced day-to-day before the pandemic.
Ah, hasn’t Covid ruined a lot of New Year’s Eves? London fireworks cancelled for the second year running. Edinburgh’s famous Hogmanay celebrations nixed. The usual massed throbbing festivities in clubs and pubs in Northern Ireland and Wales restricted to paltry groups of six.
By the time our very disabled daughter Liora was born 15 years ago, our tight little group of old besties were well into the groove of delicious New Year’s Eves. Offspring of the group would scamper around excitedly when they were little – until they skedaddled when they got older, to avoid the embarrassing sight of dads dancing and mums shrieking at midnight.
We brought Liora along once, when she was about five. It was a nightmare trying to care for her as well as hang out with our mates. Rahul – her dad – is a Northern bloke not given to tears, but he found it hard to keep his happy face on when the stress almost made him cry. We never tried it again.
Liora has complex needs which means medical as well as behavioural issues. She has epilepsy and can crash to the ground at any time in a seizure – she spent her first New Year’s Eve in the paediatric Intensive Care Unit after a three-hour fit. She has a chronic kidney condition needing 11 medicine doses per day and she has autism. At 15, she still can’t speak. She is doubly incontinent and needs nappies. She has large red bumps on each side of her beautiful little face from self injurious behaviour. When she was younger we tried holidays and visiting family and friends for weekends. Then we stopped. It’s much easier to care for a disabled child in the home environment.
We are lucky to get some paid respite from our local council and we have a very supportive social worker. But the trouble with New Year’s Eve is that none of our lovely carers want to work on that day and who can blame them? They want to bring the New Year in without the worry of an epileptic fit, a hospital trip, walls being head-banged, not a minute for the carer to wash or eat or chill.
New Year’s Eve 2021 fell on our regular respite day. Could this….possibly….mean…..? YES! Our carers agreed to have Liora for some of New Year’s Day so we could stay overnight with our old buddies and not race back with hangovers to get her at the crack of dawn. We could join in the ritual New Year’s Day walk in the park for the first time in 15 years.
I felt I had crossed over a line, a trench, a chasm from slavery into freedom, into the parallel but vastly different world of neurotypical families. I felt normal.
And then a close contact got COVID the day before and our friends asked us not to come, for the sake of their elderly parents. Fair enough, I would have made the same decision.
My reaction wasn’t appropriate to the situation. I felt a sharp stab of coldness in my chest. I felt flung back through an invisible portal to the prison world of full-time carer for disabled person, back on the wrong side of the trench.
But cancelling New Year’s Eve is the new normal this year isn’t it?
The cold sharpness comes from the previous 15 years as a parent to a sick child. It’s like Covid lockdown when nobody else has heard of it. The only difference Covid has made to my life – apart from a mask or two – is that we are all in it together. Everyone is upset about not being able to go places, lots of people are feeling isolated. It’s not just me and other parents with disabled children standing on the wrong side of the trench.
Hopefully Covid will soon be manageable and people will be partying on 31 December 2022.
I hope one day parents like us will emerge from our Covid-type lockdown lives and be able to join them.
But I don’t expect our carers will want to work another New Year’s Eve for a good long time.
The Disabled Children’s Partnership campaigns for a fairer society for every family with a disabled child. If you would like to join the Disabled Children’s Partnership campaign network, and help us create a better future, you can sign-up here.