How I Feel When My Brother With Down Syndrome Is Sick

Dear Brother,

As soon as I hear that you are not doing well, my brain goes in to overdrive and I feel like I can’t breathe. I guess it is because you becoming sick again is not something I can control. That moment when mum tells me that her and dad are having to take you to the hospital in the middle of the night actually makes me feel sick. Worried sick. My brain races at 100 miles an hour.

I know I’m your sister, and some people wouldn’t understand the responsibility I feel to make sure you get everything you need, that no doctor or nurse ignores your needs. While our parents tend to your every need, I will hold up the fort back at home. When you are ill, my responsibility extends from my kids, Elsa and Cleo, to our other brothers and sister. I take care of them all while you are recovering.

My heart breaks seeing you so helpless, so sick. You are not yourself and you are literally swept off your feet. No energy, no laughter, not my Rory any more. I picked you up and it felt as if you were going to slip through my arms. I normally watch you run around and you act as if you have endless energy. But this time, you couldn’t even sit up, support your own weight. It is a time of 100 emotions — including relief that you are finally getting the help you need. Sadness because we have no idea what is going to happen to you. Worry, too.

I go into some kind of standby mode. I can’t switch off and rest or even sleep. I don’t want to commit to any other plans, in case you need me or the rest of the family needs my help. I can’t do anything other than worry about you. I just have to be there. The hardest thing is to try to stay strong, not to cry.

We have been in this position with you before: the hospital, the uncertain feeling. I have to be strong for our other siblings and for my kids. I have to be able to explain anything to them without making them worry more. I should be able to reassure them that everything will be alright, even if we aren’t sure they are going to be. I need to be the one to kick anyone up the arse for not giving you what you need. I need to the be person that has the strength to do whatever you need.

I didn’t think I had this strength until you came along. I didn’t realize I would have the ability to hold back my tears to make sure you are getting the perfect care. To make sure my little man gets better and becomes the energetic cheeky monkey that we all love so so much.

As soon as I know that you are getting better — that is when I know I can breathe.