I’m fine. Or at least that’s what my photographs from the last eight weeks show.
In reality I’m not fine. I’m processing a major event along with the rest of the world. It’s hard to admit that life is difficult when you know that it’s tough for everyone. Everyone has circumstances that make this situation difficult whether it’s isolating alone or as a working parent; losing a job or doing a job that’s particularly demanding. Everyone is doing what they can and hopefully communities are rising to the challenge of supporting each other just as ours has.
For us the shutters came down around our family of four a week earlier than lockdown. My instinct was to protect Quinns as I felt he was particularly vulnerable. I questioned myself constantly for several weeks before we finally received his shielding letter. The letter brought a certain amount of relief. Knowing that my instinct was right and that professionals agree is comforting. It doesn’t however bring back the support that we are missing.
We’ve gone from a team that couldn’t fit in the school’s biggest meeting room to just the three of us looking after all of Quinns’ needs while Dad works full time at a stressful job from home and Big Sister is home schooled.
There’s no longer the same NHS input as those who support us have been redeployed to cover other areas. On a practical level I have been unable to get the bigger size in Quinns’ support shoes from orthotics and have no hope for the next few months.
At the beginning of lockdown Dad had to fix the headrest on Quinns’ chair while receiving instructions on the phone from the rep. Later that day the rep was furloughed. For a while now a bit of the chair falls off periodically. We simply stick it back in.
Quinns’ three Nursery days a week provided not only education and socialisation for him but also space for me. He had the benefit of 1-1 support in the classroom while personal care was provided 2-1. Now it’s me providing it all and my much needed space is non-existent. My one saving grace is his classmate, Big Sister who also covers as my teaching assistant and occasionally additional support for personal care.
We chose to stop the carers who came into our home a couple of times a week to help us out. The risk to us and others was too great and we felt we could manage. However with grandparents all isolating in their own homes there’s absolutely no hope of respite. My only relief is when Dad manages to take holiday from work.
Much as I have wanted to I have not had the time or energy to write. I have however tried my best to keep up with developments. There have been times when I’ve desperately wanted to shout about frailty guidelines, DNR letters and serious changes to legislation. It rang so true when I read recently that it’s difficult to write when you are afraid.
‘We are all safe and well and making the most of our time together’ is my cover story for a level of exhaustion and anxiety that is off the chart.
Knowing that we are shielding at home till at least mid July, the only thing we can do is keep on going. We plan to make the most of the opportunity to ‘home school’ making use of the skills and resources available to us (it will come as no surprise that our home school has it’s own name and brand!)
I can’t take on all the roles of Quinns’ team but I can still be an advocate for value over vulnerability by sharing our positive stories.
And one last thing if you’re needing a break in lockdown and haven’t watched the film Crip Camp yet I’d highly recommend it!