Love, Shawn
Chapter 1
Love can be defined as an intense feeling of deep affection or a great interest and pleasure in something. This intense feeling, I feel it towards my little brother Shawn. My name is Gina Parker, and my full-time job is to take care of my younger brother. Our parents tragically died in a car accident a few years ago. A drunk man who never stopped at a red light crashed into our parents' car at full speed. None of them survived the accident. I still remember the shattering feeling when the police officer came to my house and announced that both my parents perished. By then, I was 18 and Shawn was 12. I was in my first year of university, pursuing a degree to become a psychologist. It had been my ultimate career goal ever since I can remember. I'm now 21, and I'm nowhere close to getting my diploma or having any paid job at all. Turns out, after the accident, they wanted to send Shawn into a specialised residence since he requires a lot of medical attention. I couldn't imagine my baby brother being separated from his family, from me. I tried to convince my grandparents, uncles and aunts to take Shawn under their wing, to spare him from going into an institution for the rest of his life. Nobody wanted to. Everyone was willing to just let him go. That's how I found myself becoming Shawn's legal guardian. Years later, I understand why my family was so reticent to taking care of him. I love my brother to death, but Angelman's Syndrome is a complete challenge for someone who has no knowledge or experience about this trouble.
Angelman's Syndrome is a complex genetic disorder that primarily affects the nervous system. It is characterised by a delayed development, an intellectual disability, a severe speech impairment(most people diagnosed with A.S will never talk) and problems with movement and balance. In certain cases like my brother's, there will be recurrent epileptic seizures. Young people with Angelman's Syndrome typically have a happy, excitable demeanor with frequent smiling, laughter, and hand-flapping movements. Shawn is always smiling and getting excited about the smallest of things. One of their major interests is playing with water. You should see how happy Shawn is when he takes his bath or when he gets to play in our little pool, he is a real ray of sunshine.
After my parents' death, I managed to find a place that would be adapted to Shawn's needs. Thanks to our heritage, I could buy a small house that has everything we need: ramps, lifts, large halls and more. Shawn being unable to walk and being fifteen, we needed a house that has the right equipment to help me lift him or simply to be able to transport him in his wheelchair. The first few months were not the easiest ones. I had to turn my life around completely. Saying goodbye to college, putting my social life on hold and mostly renouncing to my dream were some of the aspects of my life I had to deal with. It wasn't easy, but I know it was worth it, for both Shawn and me. Even though I was already used to taking care of Shawn, doing it on my own wasn't easy as I thought it would be. It is a 24-hour daily job, 7 days a week. My tasks with Shawn include giving him proper hygiene care, helping him eat and drink, getting him dressed, supervising him when he plays in case he has seizures and the list goes on. Some would say it could be a burden, but I don't see it that way. I see all the caregiving as a part of my relationship with my brother. That's my way to show him all the love I have for him, and even though he can't talk and tell me by himself, I know that he loves me back. He shows it by all his gorgeous smiles and his hugs.
A typical day for us ressembles as followed. I wake up at 6am everyday to prepare Shawn's medication and breakfast. Once that is done, I go to Shawn's bedroom to wake him up. 90% of the time, he is already awake. People with Angelman Syndrome can have troubles with their sleeping patterns, so my brother doesn't sleep a lot. To wake him up, I use the lift in his bedroom that leads directly to the bathroom. From there, I change his incontinence pants and sometimes give him a bath when requiered. I then procede to changing him into his regular clothes. When that's done, I use the lift to put him in his wheelchair. When he was younger, I didn't need it, but now that he's all grown up, things have changed. We then go to the dining room to have breakfast. Firstly, I give him his medication that I crush into some yogourt. He has to take 6 different kinds of pills every morning and every evening. We then eat breakfast together: one bite for him, one bite for me. That's the only way I found to eat, because Shawn requires constant attention and I can't have me time when he is awake. After breakfast, it's playtime. I put Shawn on the ground of the living room and we play together. We mostly play with cars...well we play with the wheels of the cars. Shawn loves looking at them spin all over again. We also watch some TV shows or play with the adapted swing in our living room. I also change his protection there and then. There's a lot of things that we can, no day is the same as the other. When comes lunch time, I put Shawn back in his wheelchair and bring him in the dining room along with some toys he can play with. That way, I can have an eye on him while I'm preparing our lunch. We eat lunch the same way we eat our breakfast: one bite, one bite. After lunch, it's naptime for Shawn. After changing his incontinence pants, I put him in his bed for an hour. I use this hour where he relaxes to clean up the house a little bit and do some chores like laundry or cleaning the dishes. Once his nap is over, I procede to changing him if needed and we play together some more. When comes diner time, we do it like at lunch time plus the medication. After diner, it's bath time for Shawn; his favorite moment of the day. He must spend at least 30 minutes in the bathtub just playing with his toys and the water. He is so adorable to watch. After his bath, we relax in the living together before bed. We listen to some music and I sing to him. When the clock ticks 8PM, it's bedtime for Shawn. I always make sure to turn on the camera in his bed to hear or see everything in case he has a seizure. His seizures mostly happen at night so I have to be really careful. Once Shawn is in bed, I have some me time. I shower, I watch some TV and I chat with some friends. I usually don't stay up late knowing I have to wake up at 6 am the next day and do it all over again. This lifestyle can be quite exhausting, but I wouldn't trade it. Shawn needs me and I need him. We are family.
Not a lot of people visit us. My friends call me from time to time to know how I'm doing and if I need anything, but I rarely see them coming to my house. Most of them don't feel comfortable around Shawn because they don't understand how to behave around him. They say his differences make them feel sad and uneasy. I wish they could see Shawn through my own eyes: as a kind human being who, yes, is different but has so much joy and love to offer. I wish my friends would try to get to know him and see him how he really is. My best friend Jennifer is different though. We grew up together, so Shawn became like a little brother for her. She loves to hang out with us and play with my brother. She is really helpful in different aspects of my life and I'm so greatful to have her in my life.
Our family visits us more than my friends. For exemple, my aunt Nancy will visit us once a week and bring us some delicious food that she cooked for us. Also, my uncle John will come give me hand from time to time with house chores which is really helpful to me. I have a cousin that also comes spend one afternoon with me every week. She helps me take care of Shawn and it gives me the opportunity to socialise with someone else. Still, years later, some members of my family keep telling me how I shouldn't be spending my life this way and how I should consider sending Shawn into a residence where people would be paid to tak care of him. I know they are saying this with good intentions. They want me to get my psychology degree and live my young adult life like the others. But I can't and will never find myself being able to send Shawn away. Not now, not later.
Today, Shawn and I were at the hospital to meet with his neurologist, Dr Baker. Every other week, Shawn has appointments with different doctors to check up on him. Today were good news, everything is stable with Shawn. There is nothing new to worry about. Thanks to my parents' heritage, we are able to afford all of his appointments and make sure his condition is stable. If it wasn't for it, I don't know how things would work out. I would probably have no choice to... no I don't even want to think about it.
When we came back home, I started preparing dinner. Tonight was spaghetti and meatballs; thank you aunt Nancy. It's actually Shawn's favorite. As I was about to put the plates in the microwave, I hear my cellphone ring. Who could be calling me?
''Hello?'' I said as I answered my phone.
'' Hello this is Ben Garner from Dominion Bank, may I speak with Mrs Gina Parker please?'', said my interlocutor.
''Yes, this is her'', I replied with a hint of hesitation in my voice.
''Yeah, I'm calling about your bank account. You asked us to call you when your account would reach a certain amount of money hence why I'm calling you today.'', said Mr Garner.
''You mean...?'', I said nervously.
''I mean there is only a thousand dollars left in your account Mrs Parker. I was only calling you to let you know about the situation. If you have any inquiries, please call us back and we'll happily help you with them. Have a good day Mrs Parker.'', said the bank worker.
''Um, sure goodbye thank you!'' I replied before hanging out.
That call sure changed everything. What am I going to do now? I didn't think our heritage money would go away so fast. It was so big and I made sure to spend it very wisely. How are Shawn and I going to live with only a thousand dollars in my account? I don't even have a job to get more money. I can't let Shawn down. What's going to happen to us?
Angelman's Syndrome is a complex genetic disorder that primarily affects the nervous system. It is characterised by a delayed development, an intellectual disability, a severe speech impairment(most people diagnosed with A.S will never talk) and problems with movement and balance. In certain cases like my brother's, there will be recurrent epileptic seizures. Young people with Angelman's Syndrome typically have a happy, excitable demeanor with frequent smiling, laughter, and hand-flapping movements. Shawn is always smiling and getting excited about the smallest of things. One of their major interests is playing with water. You should see how happy Shawn is when he takes his bath or when he gets to play in our little pool, he is a real ray of sunshine.
After my parents' death, I managed to find a place that would be adapted to Shawn's needs. Thanks to our heritage, I could buy a small house that has everything we need: ramps, lifts, large halls and more. Shawn being unable to walk and being fifteen, we needed a house that has the right equipment to help me lift him or simply to be able to transport him in his wheelchair. The first few months were not the easiest ones. I had to turn my life around completely. Saying goodbye to college, putting my social life on hold and mostly renouncing to my dream were some of the aspects of my life I had to deal with. It wasn't easy, but I know it was worth it, for both Shawn and me. Even though I was already used to taking care of Shawn, doing it on my own wasn't easy as I thought it would be. It is a 24-hour daily job, 7 days a week. My tasks with Shawn include giving him proper hygiene care, helping him eat and drink, getting him dressed, supervising him when he plays in case he has seizures and the list goes on. Some would say it could be a burden, but I don't see it that way. I see all the caregiving as a part of my relationship with my brother. That's my way to show him all the love I have for him, and even though he can't talk and tell me by himself, I know that he loves me back. He shows it by all his gorgeous smiles and his hugs.
A typical day for us ressembles as followed. I wake up at 6am everyday to prepare Shawn's medication and breakfast. Once that is done, I go to Shawn's bedroom to wake him up. 90% of the time, he is already awake. People with Angelman Syndrome can have troubles with their sleeping patterns, so my brother doesn't sleep a lot. To wake him up, I use the lift in his bedroom that leads directly to the bathroom. From there, I change his incontinence pants and sometimes give him a bath when requiered. I then procede to changing him into his regular clothes. When that's done, I use the lift to put him in his wheelchair. When he was younger, I didn't need it, but now that he's all grown up, things have changed. We then go to the dining room to have breakfast. Firstly, I give him his medication that I crush into some yogourt. He has to take 6 different kinds of pills every morning and every evening. We then eat breakfast together: one bite for him, one bite for me. That's the only way I found to eat, because Shawn requires constant attention and I can't have me time when he is awake. After breakfast, it's playtime. I put Shawn on the ground of the living room and we play together. We mostly play with cars...well we play with the wheels of the cars. Shawn loves looking at them spin all over again. We also watch some TV shows or play with the adapted swing in our living room. I also change his protection there and then. There's a lot of things that we can, no day is the same as the other. When comes lunch time, I put Shawn back in his wheelchair and bring him in the dining room along with some toys he can play with. That way, I can have an eye on him while I'm preparing our lunch. We eat lunch the same way we eat our breakfast: one bite, one bite. After lunch, it's naptime for Shawn. After changing his incontinence pants, I put him in his bed for an hour. I use this hour where he relaxes to clean up the house a little bit and do some chores like laundry or cleaning the dishes. Once his nap is over, I procede to changing him if needed and we play together some more. When comes diner time, we do it like at lunch time plus the medication. After diner, it's bath time for Shawn; his favorite moment of the day. He must spend at least 30 minutes in the bathtub just playing with his toys and the water. He is so adorable to watch. After his bath, we relax in the living together before bed. We listen to some music and I sing to him. When the clock ticks 8PM, it's bedtime for Shawn. I always make sure to turn on the camera in his bed to hear or see everything in case he has a seizure. His seizures mostly happen at night so I have to be really careful. Once Shawn is in bed, I have some me time. I shower, I watch some TV and I chat with some friends. I usually don't stay up late knowing I have to wake up at 6 am the next day and do it all over again. This lifestyle can be quite exhausting, but I wouldn't trade it. Shawn needs me and I need him. We are family.
Not a lot of people visit us. My friends call me from time to time to know how I'm doing and if I need anything, but I rarely see them coming to my house. Most of them don't feel comfortable around Shawn because they don't understand how to behave around him. They say his differences make them feel sad and uneasy. I wish they could see Shawn through my own eyes: as a kind human being who, yes, is different but has so much joy and love to offer. I wish my friends would try to get to know him and see him how he really is. My best friend Jennifer is different though. We grew up together, so Shawn became like a little brother for her. She loves to hang out with us and play with my brother. She is really helpful in different aspects of my life and I'm so greatful to have her in my life.
Our family visits us more than my friends. For exemple, my aunt Nancy will visit us once a week and bring us some delicious food that she cooked for us. Also, my uncle John will come give me hand from time to time with house chores which is really helpful to me. I have a cousin that also comes spend one afternoon with me every week. She helps me take care of Shawn and it gives me the opportunity to socialise with someone else. Still, years later, some members of my family keep telling me how I shouldn't be spending my life this way and how I should consider sending Shawn into a residence where people would be paid to tak care of him. I know they are saying this with good intentions. They want me to get my psychology degree and live my young adult life like the others. But I can't and will never find myself being able to send Shawn away. Not now, not later.
Today, Shawn and I were at the hospital to meet with his neurologist, Dr Baker. Every other week, Shawn has appointments with different doctors to check up on him. Today were good news, everything is stable with Shawn. There is nothing new to worry about. Thanks to my parents' heritage, we are able to afford all of his appointments and make sure his condition is stable. If it wasn't for it, I don't know how things would work out. I would probably have no choice to... no I don't even want to think about it.
When we came back home, I started preparing dinner. Tonight was spaghetti and meatballs; thank you aunt Nancy. It's actually Shawn's favorite. As I was about to put the plates in the microwave, I hear my cellphone ring. Who could be calling me?
''Hello?'' I said as I answered my phone.
'' Hello this is Ben Garner from Dominion Bank, may I speak with Mrs Gina Parker please?'', said my interlocutor.
''Yes, this is her'', I replied with a hint of hesitation in my voice.
''Yeah, I'm calling about your bank account. You asked us to call you when your account would reach a certain amount of money hence why I'm calling you today.'', said Mr Garner.
''You mean...?'', I said nervously.
''I mean there is only a thousand dollars left in your account Mrs Parker. I was only calling you to let you know about the situation. If you have any inquiries, please call us back and we'll happily help you with them. Have a good day Mrs Parker.'', said the bank worker.
''Um, sure goodbye thank you!'' I replied before hanging out.
That call sure changed everything. What am I going to do now? I didn't think our heritage money would go away so fast. It was so big and I made sure to spend it very wisely. How are Shawn and I going to live with only a thousand dollars in my account? I don't even have a job to get more money. I can't let Shawn down. What's going to happen to us?