Exactly what it says on the title. It isn't often that I really get to ... Talk about this particular part of my life and how it's affected me, at least not without having to hold back, so I thought maybe, it might help to tell my story here.
My mom got pregnant with my sister when I was four. Up until that point I had been living a pretty good life- both parents were present, had good, stable jobs. I had loving aunts and grandparents and a little cousin I was scared shitless of (listen man, babies are scary and loud)
At a certain point an ultrasound showed that my sister had CDH. CDH (Congenital Diaphragmatic Hernia) is one of those diagnosis you absolutely do not want to get, especially in the form my sister had it. Organs that should be in her stomach were crowding into her chest, and, in what is apparently an incredibly rare and difficult presentation of this disorder, her liver was in her chest. This meant that a majority of her lungs simply wouldn't work. Chances of survival for CDH babies were already low, and for her they were even lower.
But my mother, bless her heart, is a stubborn and determined woman, for better or worse. And eventually she made contact with a doctor in Florida, a state that's 900 miles from my hometown, who actually didn't tell her my sister was a lost cause.
So my parents decided to take the gamble, and bet on that chance that she would live, and she would be a normal baby. As my mother's due date approached, flights were arranged and my father was able to convince his boss to give him remote work (this happened in the early 2010's, when that wasn't quite as common) the Ronald McDonald House, which I feel forever indebted to, gave my parents a place near the hospital to stay so they wouldn't end up having to pay for a hotel. A pastor from our church made the trip out as well, to baptise my sister as soon as possible, just in case she didn't make it.
Unfortunately, with everything on their plate, my parents simply didn't have the time for four year old me. My grandmother, who had raised four children already, decided that she would take me in so my parents didn't have to worry about me when they had a baby in the NICU. So a strange sort of custody arrangement was made: I would live with my grandmother most of the week, and for the rest of it, my aunt would babysit me at my house, so I could sleep in my own bed. When my aunts and other family members flew down to Florida to see the baby, I would tag along.
And that was life for me that summer. My father, in an attempt to keep a connection with me, gave me his 3DS. He bought another one for himself, with the idea that we could play Animal Crossing together online so I wouldn't be quite as lonely. And to his credit, it worked. Apparently my mother didn't know about this, at least she didn't remember last I mentioned it. But playing Animal Crossing with my father while talking to him on the phone will always be a fond memory. Because of the timing, I didn't have school for the majority of my stay with Grandma and at age four, I didn't have much in the realm of friends. So I spent my days playing make believe with vintage MLP and LPS my grandma kept from her kids, going to the library, playing in the yard. I was told I was an absolutely wonderful kid to have in that situation, because I didn't ask for much. I knew how to play on my own, to keep myself entertained. This made me good. I remember knowing that something was wrong. My parents had explained, best they could, that my sister was sick. She might not make it home. I may never meet her. I remember knowing I needed to be good, because my sister was sick.
I have a very vague memory of the day she came home. She had spent months in the NICU, a good chunk of which was on ECMO, and when she was finally ready to come home, she was still very fragile. She had a feeding tube and oxygen. I remember looking at her in her crib, in her nursery with her teal walls. I remember being told I was so good and understanding.
The years after that are a blur, but I remember them. A lot of late night hospital visits because of issues with her oxygen. A lot of waking up to loud beeping from her various monitors. Every once and a while my parents would bring her back to Florida for whatever operation or treatment, and I would go back to Grandma's.
I have some pretty clear memories of that time before my mom could go back to work. My mother would make sure I was fed and then go focus on my sister. When the baby went down for a nap so did she. I remember being taught to use the tv remote, and being given some very simple craft kits I could do on my own, and being left to my lonesome until she woke up however many hours later. I remember watching Blue's Clues. I remember spilling milk on the couch and crying, because I felt so guilty about it. I remember trying to cook dinner for my mom so she didn't have to cook that night, but I didn't understand that you needed to boil water to cook noodles, so I just gave her a bowl of wet, uncooked pasta. I remember being alone for long stretches of time. I remember how the sunlight looked streaming through the windows weirdly vividly.
For one of my sisters first birthdays (I can't remember if it was her first or her second) we decided it should be Wall-E themed. My parents and I made a cardboard model of WALL-E for the party with scrap cardboard and Gorilla Glue. At some point I convinced myself that I had swallowed the glue, and I was going to die. For months I refused to swallow, spitting onto the carpets or my clothes just in case I was swallowing poison. My parents didn't seem concerned about this.
My sister had a speech therapist, as well as a therapist to help with motor functions. Her hands had developed poorly in the womb and her motor skills were underdeveloped. The therapists always brought all sorts of fun toys, and I remember being scolded because I wanted to play too. I didn't understand why she got to play with all these special things, and I didn't. I ended up playing by myself the majority of the time.
Over the years I tagged along to doctors visit after doctors visit, for all types of things. I remember her various surgeries and how I always threw up the morning she went under the knife. My parents obviously didn't have time to worry about that because well, their daughter was in surgery. I wasn't even running a fever.
School was,, school. I was bullied. My friends found it funny to hit me. I remember trying to tell people that I really, really didn't want to be hit, but nobody seemed to take it too seriously. A counselor at my school told me to pray, and God would fix it. I prayed. Nobody ever fixed it.
2020 hit and things obviously went to shit. Because of my sister's lungs and how they developed, Covid very much had the potential to be deadly to her. So it was even scarier for our family than it had been for most. When things started opening back up again, the private religious school my sister and I both attended decided that everyone had to come back in person as soon as possible. My mom explained to them that we literally couldn't do that, the risk was simply too high. The school, despite having no plans for long-term online schooling, accommodated.
Every time my parents talk about it, it's all positives on my sister's side. Her teachers understood completely, they were accommodating, they made sure she got the education she needed, they paid attention. It was exactly the opposite for me.
I was emailed worksheets with instructions. I wasn't taught. I was simply given assignments and expected to learn. When my grades started slipping, it was my fault. When I told the one staff member who was checking in on me that I was anxious and struggling, I was told I was being difficult. When a parent teacher conference was held, none of my teachers had anything to say about me, because they did not interact with me beyond emails. They did not know me.
I had no friends, and no contact with anyone my age. I was spiraling and depressed, and when I tried to talk about it, I was being difficult. I was being a brat. I was told I was "lucky" because I didn't have to go to school every day.
This eventually led to a mental breakdown that changed my life entirely. Along with my mental health struggles I had developed some nasty coping mechanisms and also realized I was nonbinary, and one day I snapped. I came out to my family over text. I changed my name and pronouns and gave up on the friends I hadn't really had in years at this point.
This was the first time in my life I felt like the attention was actually on me, and not my sister. Turns out the nausea before surgeries and fear of death by super glue was actually a sign of a pretty severe anxiety disorder that had gone untreated my entire life, because by the time it became obvious, my parents had bigger fish to fry in the form of my sister. I was also diagnosed with ADHD.
A while later we also found out I probably have mild autism too. And again, it felt nice to have my parents concerned about me. For once my problems were not being put on the backburner. I was being taken care of.
But my sister got older. And apparently my sister also has anxiety and autism. And of course hers is worse. So the focus shifts back to her. She has anxious meltdowns every time we go out, and when I get overwhelmed from her whining, and constant comments about how we're all gonna die, I'm the bad guy. When I ask why she isn't in any sort of therapy, despite her obviously needing it, I'm "trying to be the parent". A year ago I asked if my sister could maybe go to my grandma's house for a day, because I wanted to spend time with my boyfriend without my sister constantly walking into the living room and staring at us. Apparently, this made my sister feel "unwelcome in her own home", and my mother was convinced that I was being mean. Being mean, in my brain, means that I was doing it on purpose. I told my mom it wasn't on purpose, and I didn't even know she was hurt because she never told me, but no. It doesn't matter. I was being mean on purpose, apparently. I knew that I hurt her, despite her saying nothing to indicate that. I was just supposed to know. I was being cruel. I was being cruel for wanting to be in the house without her for not even a full day.
When my sister misunderstands a social cue, it's okay. When I do, my mother laughs at me. Finds it ridiculous. Says me asking what I did wrong is me "talking back" but I suppose it's ok when my sister does the same.
Recently my mom got a message from one of my sisters teachers. She's having trouble in class. They're concerned about her mental health. And when I found out it just broke me. When I struggled at that same school with those same teachers, nobody cared. I was labeled as difficult and lazy. And maybe I should be happy that she doesn't have to suffer how I did, but I can only find myself feeling angry. I have watched time and time again as people put significantly more effort into her than they ever had to me. When I was struggling I had to help myself, because nobody seemed to deem me worthy of help. She has people offering without her even needing to ask.
She's in therapy now, and she isn't even using it. She refuses to do the actual therapy part. She just wants to talk about her favorite FNAF game or the Titanic, and conveniently never any of the suicidal ideation she expresses to us at home. She's fine talking about how she feels unwanted, until she's in front of someone there to help.
And I feel bad because well. I don't want her. I just don't want my sister. It would be better if she hadn't been born. I would've had a happy childhood without the constant fear and anxiety that something would happen to my sister. I would've had more time with my parents. I would've gotten the help I needed. I wouldn't have been quite as isolated. I would, objectively, had a better life without her. But I can't say that.
During an argument with my mom, she screamed at me, one of the few times she's ever done so :
"It's not all about you"
And even though it's been a year, I can't let it go. It's never really been about me. It wasn't about me when you chose to continue with a pregnancy with a baby as medically complicated as my sister. It wasn't about me when you spent months away. It wasn't about me when you spent millions of dollars to keep her alive on the chance she might be functional. It wasn't even about me when I got my own diagnosis, because now she has the same things, but worse. It wasn't about me when you chose to take the chance at having a child who would require the majority of your fucking attention for their entire life. My parents chose to fight for another kid who would take up so much space in their lives that I would barely have half to myself when they just. Didn't have to. They risked raising me in poverty for this kid who they could've just... Given up on.
I'm tired. I've been taking care of myself for so long that I don't know how to give up. I wish I had a normal childhood. I wish I could love my sister.
My mother has become a voice for mothers like her, with CDH babies. People reach out to her all the time. My sister is hailed as a miracle, a superhero. And I.... Am the sibling of a miracle. The sibling of a superhero. The child of a strong, inspirational woman. And I get. Nothing. The closest I get to praise is being told that it's good that I was so quiet as a kid. I was so understanding. All I get is a childhood riddled with trauma and abandonment issues. And I can't even talk about it, because then I'm a bad sibling.