The Reality of Having a Sibling with Down Syndrome in a Pandemic

If you haven’t been on my blog before, I have a brother with Down Syndrome. It seems like forever since I last wrote about him and my life with a brother with Down Syndrome.

Before March 2020 and a pandemic, I spent pretty much every day with Rory. He is only 6 and since he was born, we haven’t really spent any time apart. He has been in and out of hospital alot in his life and that is the only time apart. We still facetime though so does that still count?

So when the pandemic hit last year, Rory was told to shield and we were all told to stay home. This meant that we couldn’t see Rory.

At first, it was ok. We facetimed. But time went on and the next thing we know it has been months.

Staying in the house isn’t good for anyone. It isn’t ideal for mental health and we need to have contact with the outside world but Rory was at risk of getting very very poorly from Coronavirus so even though it wasn’t good for him to not leave the house, it was best.

The first time that I saw Rory was heartbreaking. With covid rife throughout the UK and still being in lockdown, we couldn’t be close to him. Rory was struggling so we decided to go park outside my mum’s house and wave through the window.

To say heartbreaking is an understatement really.

After noticing it was us, he got so upset. First we thought it was happy tears. They were but then he cried like I have never seen before. It was like he was in pain. He was heartbroken that he couldn’t hug us.

It was then that we decided that we couldn’t do it again.

We waited until lockdown was lift and support bubbles were allowed. Jonny was back at work so my mum and I become each others support bubbles. That way, we could see Rory, be safe and get the support we both needed.

Since then, we haven’t gone too long without seeing each other.

The reality is that it is heartbreaking. Rory doesn’t understand what is going on. I think he thought that everyone just left him. He didn’t know where we went.

I will never do it again. Rory needs his family and we need him!

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