Edwards syndrome: ‘How many siblings do you have?’ I once had two and now I have one

How many siblings do you have? It’s a perfectly normal question to ask someone, but a harder one to answer when there are so many possible replies.

I once had two and now I have one. But that’s depressing. You can’t say that to people. How are they meant to respond? Instead, you adapt.

The answer to the question can vary according to who is asking. For instance, when I had a doctor’s appointment recently, I was asked arguably one of the most normal questions that can be asked.

This was great, I didn’t have to sugarcoat it. “I have one living and one dead.”

The poor doctor’s face fell. Luckily, my mam was with me, and she swept in with all the medical jargon.

My sister had special needs and honestly, I could explain it you, but I would be lying if I said I could fully grasp what happened. When I told my older sister about it, she laughed, sure she gets it!

My sister was born with Edwards syndrome, a chromosomal disorder with which she also obtained multiple other medical issues.

She was also the most gorgeous baby you have ever seen.

I was five years old when I went from being the youngest to the middle of three girls.

I was five years old when I became a big sister.

I was five years old when I had to understand what special needs was.

I was five years old when I returned to being the youngest child.

I was five years-old when my family’s life changed forever.

The concept of a five-year-old burying their sibling is not normal, I know that. A five-year-old watching their parents break down as they go from having three little girls to two is not normal.

The concept of the question of how many siblings you have causing immense confusion for a five-year-old is not normal. I am aware of all these things and yet it was my reality.

I remember thinking, ‘I need to be better at this,’ like my older sister, who was seven at the time. To be honest, we have had multiple discussions about what we both say when someone asks us how many siblings we have.

When we say “just the one”, the most common reply is: “God that’s gas it’s just the two of you!” A response I often get, which is really a bruise to the stomach: “I could have sworn you were a middle child!”

Apparently, I still have retained the typical qualities of a middle child without even realising. I always brush it off and laugh.

But I technically am, or maybe I’m not.

During the preparation for my Leaving Cert Irish oral, I was asked if I was going to mention it (my sister) by a family member. I love our native language, but I was never going to be able to translate her medical condition to Irish.

It is great when my friends bring her up in a nonchalant, yet comforting, way. “Imagine us getting ready for her 18th now!” they say.

It is a strange solace knowing they will help you acknowledge it as they have the awareness of how cringe it can feel when someone asks: “How many siblings do you have?”

Of course, you can tell the whole spiel to the person asking, they mean no harm. It’s the awkwardness after that I struggle with, the discomfort in their eyes as if to say: “I’m sorry, I should have known better.”

This isn’t fair on the person who asks such an innocent question and yet, when they find out the truth, I find myself feeling the obligation to comfort them as they get frustrated.

They ask questions, I answer, and suddenly my chatty, creative disposition dissolves into a string of medical jargon and me assuring them I don’t mind talking about it.

Truth be told, it depends on the day of the week whether or not I like chatting about it.

My little sister turned 18 a few months ago. We did not have a party. Instead, we went to the grave and sang happy birthday in the middle of October. God bless anyone who was walking by – I would say they were petrified hearing singing in the graveyard.

I am not looking for answers, simply because I don’t think there is just one.

I have two sisters, but I also only have one who I am incredibly close with. When people learn about the loss of our little sister, you can see something click in their brains as they realise – “Ah, that’s why they’re so close.”

We watched the film Little Women one year at Christmas. It is a known classic, yet we had no idea what the plot would entail.

I wish I looked it up beforehand, a bit of warning would not have gone amiss. But that feels silly: who needs warning for a movie?

I have friends who I can chat to about it and I feel at peace with it. We have our inside joke of how I whip out my acting skills when I say ‘just the one sister’.

It is a completely normal question. And you know what? I hate it.

• For more information on Edwards syndrome, see SOFT Ireland, a charity that supports those who experience Trisonomy 18 and Trisonomy 13.