I was asked to write a short piece about how things currently are for us during the Covid-19 lockdown. It’s ATR-X awareness day today and yesterday was the first ever ATR-X day of remembrance so I thought I’d share.

As cases of covid-19 arrived in the UK our family were taking steps to protect my brother Dan who has a rare genetic disorder resulting in Profound and Multiple Learning Disabilities. Things changed very quickly. At first it was a trip round all the shops in our local town to source antibacterial gel and laminating posters on how to wash your hands to put up around the house. We googled how safe it might be to still go swimming as this is Dan’s favourite activity, would the chlorine kill the virus? We stopped going to our local coffee shop for our weekly hot chocolate and cancelled plans with people who might be higher risk. Before Boris’ announcement it felt very much like the general public weren’t concerned. We went out for a walk with Dan in his wheelchair, we chose somewhere we hoped would be quiet and tried to keep a significant distance from others. A woman approached to pet our puppy and we had to respond with a panicked “keep back we’re isolating from the virus”. Within days of these early measures we had to take the diffcult decision to shield Dan from the virus. This meant cancelling all of the support we have in place, the PAs we employ to support Dan at home and the cleaners that helped us keep on top of the domestic tasks. I have my own house 5 minutes away but at that time our close family friends had moved in with me during a planned relocation from Cambridge to Edinburgh so I packed a suitcase and moved back in with my brother and our parents.That was on the 17th March. We’re 7 weeks in to who knows how long? We can’t count days off on a calendar because what’s the end date for those of us protecting highly vulnerable family members? Social isolation in the general sense is about flattening the curve, protecting the NHS so it is not overwhelmed. I understand the need for relaxing those restrictions to keep businesses up and running but the risk to Dan is no less now than it was in March. I honestly can’t see anthing changing significantly until there’s a vaccine in place, I really try not to think about that because that could look like 18 months of full time care and no outside contact except via a screen. There is plenty to be grateful for, we are safe and healthy. The biggest one is that we are together and able to care for Dan between ourselves, I have no idea how we would handle being separated from him, especially during such a worrying time. We have access to a large garden and have been enjoying beautiful weather. I am getting out most days for an isolated walk or bike ride. We are financially secure and are able to safely receive food and medications by delivery. There is a handful of people nearby willing to run the errands that we can’t. These are the things I try to turn my focus to when my brain starts running the question “how much longer?”We are worried and weary. Last year took almost everything from us because we lost my younger brother Sam very suddenly to sepsis and pneumonia.

On his anniversary I sat by his grave singing the song I had sung at his funeral service, tears running down my face. Our code family friends woo are currently living in my house stood several metres away and it broke all of our hearts that we couldn’t embrace to share in our grief.

The daily restrictions didn’t hit us as hard as it hit the country in general. Our family is used to putting those more vulnerable ahead of ourselves, we are used to plans being cancelled and used to staying in for days on end when someone is unwell. We’re certainly not scratching our heads wondering what to do with all this time. We’re doing our own tasks in Dan’s team of support and we’re doing eveyone elses’s. We cook and clean and care to keep Dan healthy. We summon non existing energy to plan and execute activities to keep him settled and stimulated.What would I change? I’d bring Sam back and I’d have the vaccine ready to hand so that we could go to the holiday house in Rhosneigr that we love. We could breathe in the sea air, hug our friends and watch the dogs running along the sand.