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6 Things That Are Part of My Reality Having a Sibling With Down Syndrome

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Being a sibling to someone with a disability is like being in a secret club. Some things, only fellow siblings will understand. But what is the reality of having a sibling with Down syndrome or other conditions?

It is hard to understand what a life like this is like when it isn’t your life. There is the old saying about walking a mile in someone else’s shoes. So I am going to tell you the reality of being a sibling, from my eyes.

1. The hospital appointments.

If you have a sibling that sees a lot of health professions then you will know that NHS hospitals are like a second home. I know that not every family has siblings that go along to these appointments. The appointments themselves can be stressful, you go for moral support for your parents and sibling. I’ve met pretty much every one of Rory’s consultants. I have my own opinion of each one of them. In some ways, I do feel as a sibling it is easier to tell a consultant there is something you don’t agree with. I have the mind-set that if Rory needs something, I will put up a fuss and I do that more than what my parents do, purely because I don’t care what Rory’s consultants think of me. I want the best for him and I will fight for it.

2. The future.

As the oldest sister I have heard people assume that when my parents are gone I will be ultimately “left to care for Rory.” I have never understood this as a negative thing, I will always care for him as he is my brother. The fact that people think being left with a sibling is a bad thing makes me so angry, I don’t care if I am left with my brother. I care for him now and I will do the same when I am 80!

3. The idea of lack of attention.

Maybe not so much for me as I am older, but if there are younger siblings involved this can happen. Someone with additional needs can need a lot of attention, this time can be taken away from other members of the family. If you are older, perhaps it is easy to understand the adjustment that has to happen. For younger siblings this can be hard to process.

4. The stereotypes.

Nobody really likes stereotypes. Society seems to have this idea that we can be unapproachable and won’t have any time because of our family situation. Obviously this isn’t the case and Rory doesn’t have that much change on my life events.

5. Relationships and friendships.

In regards to relationships, I didn’t have to worry as I was with Jonny, my partner, years before Rory was born. But what is it like if you date or make friendships when you have a sibling with additional needs? I guess some people might find it awkward, but I feel like if they stick around when they know about your whole life as a sibling in this disability community then they are definitely ones to stay in your life.

6. The love.

The love you have from your sibling is indescribable. They never judge you, they never stereotype you and they are always there for you no matter what. The experiences you have with them and because of them are precious. I would do anything for Rory and I know that some sisters don’t have to do anything like I do for their brothers, but honestly, I wouldn’t have it any other way.

I don’t mind the fighting for what he needs, the judgement, the stereotypes, the people who might not want to be my “friend” because of the life I have because I have unconditional love from my brother and that is all that matters. I am proud to be in this club with fellow siblings. I bet you didn’t realize that some celebrities are also in this club? Jamie Foxx has a sister with Down syndrome and Eva Longeria has a sister with a disability similar to Down Syndrome. So it is a pretty awesome club to be in!

Originally published: July 22, 2018
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