We were fully expecting to be contacted and told to shield. My six-year-old son Sebastian has Duchenne Muscular Dystrophy, a progressive, life-limiting muscle-wasting disease. Pre-lockdown, the term shielding didn’t mean anything to me. I didn’t understand the impact it would have on our lives and how long it would last. I still don’t think I understand that fully.
Muscle wasting in Duchenne Muscular Dystrophy means every muscle, including the heart and lungs. Sebastian takes medication to suppress his immune system, so it didn’t come as a surprise when we were contacted and told to start shielding. Neither did we struggle to come to terms with total isolation.
But what did come as a shock to me is how hard it is to come out of it.
Shielding essentially means responding to the most primal parental need – to protect your child from the risk of the outside world. Parents often say they wish they could wrap their child in cotton wool – but when you have a child with a complex, life-limiting condition, that instinct is even stronger – and even harder to ignore.
We already live in fear of the outside world
Knowing our children already have so much to deal with that we as their parents can’t protect them from weighs heavily, and made so much worse by the added risks in the outside world. We learn to push it down, to bundle the anxiety deep down inside like a ball, and learn to live with it still there.
Professionals encouraged us to accept those risks as part of our ‘normal’ lives, to encourage participation in all that life offers over the fear of the everyday things that threaten his life. To try and live as ‘normal’ as possible. To trust that the outside world was safe.
And then Covid-19 crashed into our lives
It has reignited fears not just of this virus, but every cold, cough, tummy bug – all of the daily risks we take, of Sebastian’s vulnerability. It has given a rational space to the idea that our Child’s life is much more fragile than those around him. It has allowed our greatest fears to be voiced and acknowledged. It has made the world outside into a frightening place. And more than that, it has allowed us to feel that by keeping us all at home, we don’t just control, but rather eliminate, those risks. We can keep him safe. We can protect him.
So, I didn’t feel relief when we were told that shielding will come to an end. I felt fear.
It means entering the world again when I am uncomfortably and acutely aware that I cannot control what happens and I cannot keep my son safe from harm. Our world has diminished and I am not ignorant of the inherent risks of that. But they are somehow abstract, easier to dismiss.
Now I have to learn how to squash it back into a ball, but the ball is much less pliable and the space it occupies will be bigger.
Once your world has shrunk into a safe cocoon to protect your most vulnerable and most loved, expanding it and relearning how to live with risk will take time. It will take courage in a way that very few people will ever understand.
So, please be patient. Wait for us. We’ll join you. It’s just going to take some time.
Friendili is a social networking app where families share their experiences of disability and chronic health conditions. You can find out more here.