Teen Girl With a Satchel: On going to Holland with Jack

Teen Girl With a Satchel: Going to Holland with Jack
By Georgie Carroll

I can’t remember the first day I realised my brother was different. Three years my senior, growing up with Jack had always seemed like the norm, but I suppose when I was started being able to do things that he couldn’t (like reading, writing, holding conversations) I began to notice differences. 

I’m lucky that for the first eight years of my life, and the first eleven years of his, we lived in a tiny coastal town in which everyone accepted Jack like there was nothing different about him. He had more friends than me, was a part of all the local sporting teams, and was a major participant in our local primary school.

We moved in 2003, and that was difficult for him, but we were lucky in that our local high school allowed him to go through fully integrated (my mum is a strong opponent of “special schools”). He graduated high school in 2009, and I’m pretty sure it was the proudest day of my parents' lives.

My parents had been married for eight years and were in their early thirties when my brother was born. In a bizarre twist of fate, my mum had been working in Special Education for a decade before they had Jack. I guess God wanted to send him to a family who He knew would be able cope.

It’s not something my parents talk about often, but a few times they’ve alluded to the difficulty of going into hospital expecting to have a healthy first child and then being told something had gone wrong. They coped because they had to, and a year later, his first birthday apparently turned into a massive party for everyone who had helped them survive the first year.

There is a piece of writing my mum often turns to when she faces difficulties either with Jack or in her line of work, and it’s called “Welcome To Holland” and it's by Emily Perl Kingsley:

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this.....

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. 

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." 

But there's been a change in the flight plan. They've landed in Holland and there you must stay. 

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. 

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. 

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland. 

It hasn’t always been easy. People are cruel. The word "retard" and the ease with which it is thrown around makes me feel sick.

Sometimes living with Jack is frustrating. It is hard when I have to stay home on a Saturday night to look after him. It is hard when I have to be a carer. It is hard when I realise I am never going to know what it is like to have a “regular” sibling.

It’s also hard when I make off-hand comments about getting married and having children, and it then hits me that it is something Jack will never experience. Jack doesn’t see himself as disabled, and so despite knowing many lovely girls with Down Syndrome, he is adamant he wants a “normal” girlfriend. That breaks my heart.

Knowing that I will one day be responsible for him is also a hard realisation. With two 50-something healthy parents, hopefully that reality is still a few decades away, but the thought is always at the back of my mind. It’s at the back of my parents minds, as well, as later this year they want me to gain power of attorney over him. It’s not something most 18-year-olds have to think about.

All of the difficulties aside, I am blessed to have one of the most inspirational brothers in the world. When he was in Year 12, Jack won the Minister’s Award for Excellence In Student Achievement. Only a handful of these are given out each year, and at the ceremony he was surrounded by high school Olympians and world-class musicians and artists.

He is a second degree black belt in Muay Thai (grading to third degree in December) and an utter gym addict. He amazes his personal trainer every single day with what he is capable of achieving. In terms of his fitness, he far surpasses most other people he encounters.

He’s a TAFE graduate and has held numerous part time jobs. He is also fiercely independent. Despite the fact I (or my parents) are required to help him occasionally, he is able to go shopping and do things by himself. He is also studying to get his Ls. He is determined to not let his disability ever get in the way of what he is able to achieve.

Jack turned 21 in August and over a hundred people from all over Australia turned up to celebrate. Mum had everyone fill out a guest book with their favourite memory of Jack, and the number of people who said knowing him had changed their lives brought a tear to my eye.

I personally think it’s impossible to get to know Jack and not be impacted by his spirit. I yell and scream and am utterly selfish, but he is the kindest, loyalist, friendliest, most inspirational person you will ever come across.

To me, Jack is a normal big brother. The way I see it, God was just so excited to make him, that he accidently gave him an extra copy of chromosome 21. It’s like in the Powerpuff Girls when the Professor accidentally adds Chemical X. It changes the girls, but not for the worse. It’s not a negative thing...

Society often acts like Down Syndrome is the end of the world. But it’s not. Maybe it’s not Italy, but I’m pretty thankful that God diverted my parents to Holland the first time around, because if He hadn’t, I would be nowhere near the person I am today.


Claire @ cinnamon and south said...

Thanks sharing your story Georgie, and for being so honest about what it is like to have a family member with a disability, great article. Your brother sounds like a very determined young guy, he is an inspiration, and also lucky to have a sister like you!