My Brother: Down’s Syndrome and Loss

On the 4th September 1984 my life changed completely. I was four years old and it was my first day of school. It also happened to be the day my brother was born.

I can still remember now, (approaching 30 years later) walking into that room to meet him for the first time. This tiny person lying on his front with his hands either side of his head dressed in a white towelling baby grow with a white blanket pulled up to his neck.

“Mum, why does he look like a tortoise?” To my child’s eye his head and hands looked like they were coming out of his blanket shell.

I always thought my parents knew right away about the Down’s Syndrome but only in recent years did I learn that this wasn’t the case.

Gary was born with a hole in his heart, which his lung was partially inside. He had one strong lung and one lung damaged by his beating heart.

My memories of my amazing little brother have become clouded by discussing them with people who remember things differently to me or don’t remember the incidents at all. So I prefer to keep my memories separate from my family.

Even now writing this I have tears forming in my eyes. Tears for the brother I always wanted, who taught me what love was and who sadly is no longer with us.

But I’m jumping ahead to the end and selling him short. He was with us for 2 3/4 years, dying on the 12th May 1987. It wasn’t long enough, but he was never mean’t to stay forever.

Being born in the 1980’s means we have no record of his voice. I really wish we did. I recently got our home cinefilm’s transferred to DVD. The sub total of his short life was a couple of minutes of film.

We don’t have a lot of photo’s either. I guess not knowing how short a time he would be with us we didn’t think to take more photos. With the invent of digital cameras and camera phones there aren’t many days that go by now when I don’t take a photo but back then things were so different.

My mind is full of some wonderfully vivid moments that over the years I have shared with most of the people in my life. You see unlike some people I don’t think talking about him is a bad thing. I don’t want one of the most important people in my life to be forgotten. Because not a day goes by when I don’t think of him.

I wear his picture in a locket around my neck and have a photo of me and him playing in the snow on my wardrobe door. He is always with me, because I chose not to let him go.  My parents told me I should move on and even now they don’t think it’s healthy for me to hold onto him but he is my brother and he is a part of me.

I was the lucky one. I never saw the Down’s Syndrome only Gary. I saw his pain and suffering but I also got to see his face light up when I walked in the room. I miss the way he looked at me as if I was the most amazing thing he had ever seen. I got to hear him laugh, so much sometimes that he would literally gasp for breath and you’d have to leave the room to let him calm down.

I got to be the person who taught him to walk. He was walking for a week before I could get him to do it in front of anyone else. As soon as he started walking I’d scream for them to come quick but by the time they got there he was always sitting on the floor laughing at me and clapping his hands

I told my Grandad and he said he had an idea. He would call me into the kitchen and see if Gary followed us. He used to call him my shadow because he was always two steps behind me. The first time he came crawling through the door, but we didn’t give up. We tried again later in the day and he came walking through the door. I wasn’t the only one who knew any more and after that he walked more and more.

Although it should be noted walking was a difficult thing for him, he would only manage a few steps before needing a rest.

I often wonder what it must be like for my Sister (born the year after Gary died) and my brother (born 5 years after Gary died) to have a sibling they never got to meet. I know my brother thinks about him sometimes and has always been curious and asked questions. I don’t ever remember my sister asking questions about him.

I’m not sure why I decided to write about him. I guess the fact he would be 30 this year is making me miss him even more. I always visit him on his birthday, so I can sit and talk to him and fill him in on what I’ve been up to. To mark his big birthday’s I have a wreath made with his age on it and I make a donation to the Down’s Syndrome Association in his name.

I made a choice to allow myself to keep him in my life. To sit and talk to him when I need to. To cry for him like I am now when I miss him. But the truth is he never left me. I can’t see him anymore but I know wherever he is he’d be looking out for me.

I owe him so much. This little person who changed my life completely, not once but twice. Once in the best way possible and once in the worst. I guess in writing this a few more people get to know he existed and the impact he had on my life and in that he gets to live on in memory a little bit longer.

The truth is without having him in my life I wouldn’t be the person I am today. Not a day goes by that I don’t miss him or wish I could see him again but then I believe one day I will. I know this because on the day of his funeral I saw him playing outside and he told me when my time came he would be waiting for me and I wouldn’t be alone and in knowing that I have nothing to fear.

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