TAPVD Sibling

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Status: In Progress  |  Genre: Non-Fiction  |  House: Booksie Classic


A short story about my experience as a child who grew up with a sibling suffering from a chronic medical condition. I'm an inexperienced write but it's a story that I feel people need to read.

Submitted: May 21, 2018

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Submitted: May 21, 2018

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The earliest thing that I remember from my childhood is at the bottom of a tree. In my kindergarten, when I was 4 years old standing next to my best friend Brittany o’ Call looking up to the top of its branches, imagining that there was a huge nest filled with baby birds. As 4-year-old animal enthusiasts, we had to use all of our might to climb this tree and save those poor birds, I remember Brittany climbing a lot higher than I could and reaching the nest. I was trying so hard to catch her but I was a dainty little four years old who had never broken the rules in my life. The next thing I remember is my kindy teacher Libby having to climb a ladder to get two 4-year-olds who were stuck in a tree down from the tallest branch. 

That was my first day of kindergarten. 

The next thing that I remember from my childhood I was 6 and a half years old sleeping at my nanas house. my yonder brother Kynan had just been born 7 weeks earlier. my sister and cousin were jumping on beds in the spare room and my nana was sitting on her black leather couch, on the phone to my parents in the lounge room. She was crying and when I noticed her I cautiously went to ask her what was wrong. I remember her telling me through tears something about my new baby brother being in the hospital, needing surgery and having something wrong with his heart. I don’t remember why but something inside me filled with rage at that moment. I stormed down my nanas hallway, feeling as if I was the only rational, oldest person in that house. I wasn’t crying and I was thinking about my crying nana who wasn’t handling the situation in the other room and I thought it was my duty as I stormed into the spare room where my sister who was 4 at the time and my cousin who was 2 and I remember screaming my lungs out saying “ how can you just play and jump on the beds. Don’t you know that Kynans going to die.”

Being only 6 years old myself, I didn’t really understand what that meant. And I don’t know where I got that idea from. I know now that I couldn’t have expected my younger family members to think any different. I remember them continuing to play and laugh,  jumping on the beds in their dresses saying that they didn’t care. And I think that was the first moment to the start of my life. 

I remember later on my dad having to drive down from pt Augusta with our things to drop them off to us at our nanas. I remember knowing that he’d be gone for a long time and that he didn’t know when he was coming back. Mum says that having to drive away from me and my younger sister was the hardest thing he ever had to do in his life. and was one of the only moments that she’d ever seen him cry.

In my R/1 class we hung a picture of my brother on the wall and being at a Catholic school we said a prayer for him every day. and after school every day we would walk just down the road to my nana and granddads house where nana would cook the worst food and wed sit on granddads knee as he told us stories about living in Britain after the war. We lived with them for roughly three months before our parents returned from Melbourne where my brother had open heart surgery. He didn’t die, he returned very much alive but from that point on he was the very focus of our lives. we would have to travel to Adelaide every few weeks for appointments or we would live at my nana and grandad's house. I remember often being told by my teachers about how well I could adapt to my ever-changing livening environment and was still doing well at school. I was never one to miss behave. 

in the following years, my mum started working for a charity called heart kids that worked with children with heart conditions like my brother and my family became close to many others in similar situations. I think with all that I know now, this was the best thing for my family as she worked as someone who supported others in our situations. but really they supported us. 

from this point on, I had set out to learning everything about my brother's illness, at the time I could name medically every condition that he had. I was the only year two student that could remember that Total Anonymous Pulmonary Venus Drainage meant that a baby had been born with all of the pulmonary veins from the left side of his heart were connected to a vein in their neck, with the only thing keeping them alive for 7 weeks is the same hole that keeps a babies heart pumping in the womb staying open for blood to flow in. 

as Kynan got older. from around the age of two. he started to collapse. 

I remember walking around my kitchen on a general day and turning the corner to my mum on the floor holding my younger brother screaming for someone to call an ambulance. I was always the one to call our grandparents to come pick us up. And ambulance visits became a normal part of our lives. by the time I was 10, I became accustomed to waking up in the morning to get ready for school and realising that only my dad was home. because I had learnt to sleep through the hurricane that was ambulance officers swarming into my house during the night to whisk my sick brother and mum away to hospital again, and again, meaning they weren’t there in the morning. 

in Year 3 we had an assignment where we would have to make a poster about anything we would like to. most of the girls in my grade were doing it on breeds of dog, princesses and footy. I decided to do mine on Childhood Heart Disease. I wrote about how the surgeries work and made what I thought was a magnificent heart-shaped poster. I remember researching my topic and being so interested. Finding pictures for my assignment was a breeze, I simply placed pictures on that I was accustomed to seeing in my life. one was a picture of an open chest as doctors are working on a patients heart, and another was a picture of a doctor holding a baby's hand while its still in the mother's womb as I talked about how surgeons could do open heart surgery before a baby is even born. both of these pictures were shots from the surgery room, covered in blood and gore. I remember looking and making that poster with so much pride and joy, I was sharing a part of my life. I was completely unaware of the ruckus it was causing behind the scenes with my parents going to see my teacher in order to ask if it was okay for other students in the class to see. I had the most gorgeous teacher at the time, her name was miss Opie and I remember her having curly blonde hair and a tear jar for when people cried. she simply said “This is her life, this is what she wants to do. she needs to know that what other people think about her passion shouldn’t stop her.” Although she had never viewed the poster before.

I still have that poster today. I look at that poster now and think about how I would never show those pictures to an 8-year-old. I wouldn’t expect any person that is so young to understand what anything on that poster meant. Even today in a class full of almost adults, I feel as if those images would be too much to handle and the words on the poster would be incomprehensible. But I know that I understood it, and it astounds me every day. 

I gave that poster to my teacher and I remember as I gave it to her she burst out in tears. I remember getting her tissues and trying to comfort her, but I also remember being so confused. I had absolutely no idea why she was crying. these things were so normal to me and I think at that moment as she saw what I had made, she was taken back by the goriness of it all. and at that moment, she saw a little bit into my mind. I was a small little girl with long blonde hair, who was only 8 years old and had never misbehaved, always came to school with a smile on my face, and she saw my true experience with life. and she could see that this was so normal. and as I comforted her she never said a word about it being different from the other posters. She was definitely one teacher that changed my life for the better. 

Throughout the years I feel as if my family became more of what is considered ‘normal.’ my mum continues to work for heart kids although my dad works a hard job in the mines to keep us going as a family. I am now 17 years old. My brother is still fighting every single day. he’s gotten a lot better and hospital trips are not as often, although he has also been diagnosed with multiple different learning disabilities that were triggered by his own traumatic experience. 

Last month I lived by myself for two weeks, getting lifts from friends to school every day and still trying my best. This was because my brother had to go to Melbourne once again for another heart surgery and because I’m in year 12, they had to once again leave me behind. I stayed by myself because my grandad died early last year and my nana has moved into a nursing home. it wasn’t so had to be left here, I had a boyfriend figure at the time who provided me with as much support as he could, although I believe that my heck-tick life is not for everyone and he broke up with me a short time after they got back. 

I feel as if being a sibling in this type of family is hard. I feel the need to constantly explain to people why my brother is the way that he is, some people are more accepting than others. none of us has copped the abuse more than my mum who had to deal with children and other mothers saying snarky comments about the breathing tube that my brother had to wear when he was little. some wouldn’t let their children play with my brother on the playground because he was “sick” and it broke my mum's heart hearing others being so uncaring and inconsiderate of all that the little boy in front of them had already gone through. 

I have learnt that it is hard being in such a crazy family. and after everything that is going on in my life including my granddads death and the fact that my nana had to sell what I feel to be a family home to move into a nursing home, my friends and learning that girls can be mean throughout high school, losing my first boyfriend not long ago, and all that goes on with my brother, i am now failing school in year 12 have haven’t told my parents about it. I feel as if I am failing at every aspect of my life and I won't reach my goals for next year because I can’t focus.

 i decided to write these things down as I am in my final year of high school and although I don’t want to forget these early times in my life that shaped me as a person, I also wrote my year 12 research project about siblings of children with chronic illnesses and disabilities and finally after this research these things have made sense. My sister was so young when my brother was born and although at the time she didn’t understand, she went through the same experiences I did. she has grown to despise my brother. and to many, this may seem like a horrible manner for my now 15-year-old sister to have, I have learnt that this is a scientifically proven behaviour of some siblings. and I have learnt through experience that when it really counts, she does care for him the most., also learning that my youngest sister who is two may experience similar traits even though she will have a completely different experience to the rest of us. 

 

there are many more stories I could tell about my ever-changing, dramatic on the go life that has been made for me. including the facts that I have grown up always feeling the need to be perfect, I never misbehaved, I would parent my younger siblings and learnt a lot about my brother's illness at a young age. I have learnt that these traits are not just me being ‘different’ they are in fact caused by these battles I have faced with my family throughout my life. I have learnt that getting support from heart kids has positively affected the way I and my sibling's cope. I want to share this experience as I feel that a lot of light is shone on parents experience with their chronically ill children and obviously the child that has to go through it all. but its not often that you learn about a siblings experience. We all go through it together. 

 

 

 


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