My family and I got back from a break to Centre Parcs and there was a message to say Mary’s school had been closed due to suspected Covid-19. Mary’s Consultant confirmed she would need shielding after a prolonged seizure which required A&E resuscitation care and a stay on a High Dependency Unit just a couple of weeks before isolation started.
In the beginning I couldn’t sleep, I was terrified that Mary would become sick and her mummy or daddy couldn’t be with her. I even had the horrible thought about what if she got so ill and died alone?
And then I had to isolate myself in a different room as I felt ill and feverish, with flu-like symptoms and didn’t want to pass it to Mary. It felt awful because I was worried that Mary would wonder why mummy wasn’t cuddling her.
During this time Mary had another big seizure. I was crying on the phone to 999. It was the heartache that because of my symptoms I couldn’t go with her to hospital. I watched her being whisked away in the ambulance with her daddy terrified I might not see her again.
Another big worry initially was how I was going to source all the shopping for my family. I have 6 children at home. How would I get all Mary’s medicines? Slowly we have been able to secure supermarket deliveries, and we have a brilliant volunteer to pick the medicines up.
It’s heavy going. Mary doesn’t understand why she can’t go to school or go out. The other children luckily understand we can’t take a daily walk as we need to keep Mary safe. I worry that being at home for so long will affect Mary’s development without the help of the brilliant staff at her specialist school. Her school teacher does twice weekly phone calls, to check on Mary’s wellbeing, and give ideas for activities.
It is exhausting not having the break I would get while Mary attends school, but I am grateful she is safe, and she brightens all our day with her lovely big smiles.
Hope House Hospice calls every two weeks to check if they can help with anything. I know there is always someone there who understands and can listen without judgement. Hope House Hospice also have specially trained sibling support workers who could offer a listening ear to Mary’s brothers and sisters. Sadly we won’t be able to attend our hospice respite break in the summer because of the virus and we will miss that greatly.
The Together for Short Lives’ Facebook support group remains a good place to chat with parents in similar situations, and I know the helpline is always available for support too.
I worry that we may need to shield for a long time, and how this will affect everyone. All the planned days out with Mary to make memories are obviously not going ahead, so I am changing my mindset and going to bring the fun to the home. The future is uncertain but we are safe and not alone.
Please join us in supporting this year’s Children’s Hospice Week (22-28 June) at this critical time. Coronavirus has changed all of our lives, but for families caring for a seriously ill child, or whose child has died, they feel more alone than ever.
