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July 29, 2018



      Madeline was born when I was 2, barely old enough to talk, and surely young enough to have absolutely no idea what was going on. The very first memory I have of her is a sad one -- one that you could say sums up the first few years of her life. I was probably 4 or 5, and was woken up in the middle of the night by the flashing lights of firetrucks and ambulances outside my house (my room faced the street). Though my family doesn't live there anymore, I can so easily place myself right back into that room, on that night. I remember jumping out of bed and climbing on my desk to get a better idea of what was going on. I was confused and scared, but couldn't turn my eyes away.  Unfortunately, this wasn't the first time this had happened, and it certainly wasn't the last. 

      Even to this day, the most frequent question I get asked about my sister is: What happened? Over time, I feel like my answer has been vague and very confusing to some people, so I decided maybe it would be beneficial to sum it up here in a more organized way: Before she was born, all tests had come up normal, indicating she was to be a healthy baby. My mom's scheduled c-section came and went and all signs were normal, until Madeline came out of the womb. She wasn't breathing well, and was taken up to the NICU. The NICU team present claimed she was 'dusky' (not getting enough oxygen), and proceeded to run some tests to find out a potential cause of her breathing issues. A hearing test found she had hearing loss. X-rays to understand the lung issue ended up finding that she had holes in her heart (called VSD's), and one of her valves was leaky. They found that her spinal cord was fused to her vertebrae, and she had Bronchial Malaysia, which makes it very difficult for her to get air into her lungs. A G-tube and trachea were put in to help her breathe and eat/drink. It was later found that she had a malrotated bowel, and her colon was't connected to her anus as is procedure. It became very clear shortly after that these issues were not only permanent but life-threatening. About five days after her birth, the surgeon sat my parents down and told them to prepare themselves for mental acuity and brain development issues as well as a result of the various physical disabilities. The underlying cause of all of this had yet to be established, so a prognosis wasn't available. It wasn't until she was a year old that more sophisticated genetic testing found the root of the issue -- during development, Madeline had what is called an 'interstitial deletion' of her sixth chromosome. The odds of this happening? One in six billion. The sixth chromosome plays a vital role in organ development and transplantation, as well as the immune response. Unfortunately there was still no life expectancy given to my parents, but an estimate was around three years max.

        Fast forward eighteen almost nineteen years, and Madeline is still smiling through her days. My mom and I took her to the beach fr the first time in at least seven years, and she is one year away from graduating out of her special needs class at a nearby high school. She's played on baseball teams, participated in special olympics, and made countless friends along the way. 

        Looking back at my first ten years or so, I find myself feeling mixed emotions, particularly gratitude and anger. Gratitude, firstly, for all the people that helped Madeline get to where she is today. Madeline can't walk, eat, cleanse or do just about anything on her own, and thanks to the perserverence and patience of our wonderful nurses that have come and gone over the years, she's thrived regardless. They are her biggest advocates outside of my family, and I can't thank them enough for their devotion to her and her happiness. 
        I feel gratitude, for the fact that Madeline grew up in the early 2000s.  Medical technology's been advancing at a miraculous rate, and the stigma around people with disabilities -- albeit mental, or physical, or both -- has dissipated to a level MUCH more tolerable than back in the 50's.  Without the countless surgeries and machines she was connected to 24/7,  she likely wouldn't have made it long past her infancy. Above all, of course then, I feel gratitude simply for the fact that she's still alive today. Even in her early teens, she had multiple close-calls; getting the common cold has proven to be close to fatal for her. When I was in middle school, every time a teacher interrupted a class of mine, I couldn't help but think to myself, this is it. Madeline would be fine one day, then do a 180 the next (once she woke up with bruises all over her body, another time she woke up and her head had expanded to almost twice the size). Given her body's unpredictable nature, every day with her I treat as the last. 

       Another emotion that I dealt with growing up, was anger.  I know it's a weird thing to admit, but it's true. (And before I get into this, I wanted to make a clear distinction between Madeline and Madeline's body.  They are fully independent of each other; who Madeline is is not defined by or limited to her physical capabilities. At times I worry when I vent to people about her situation that they will think less of her or depersonalize her because of what her physical state is at the time, so I just wanted to state it as clearly as possible.)
       I think it goes without saying that the most frustrating part of having a sister with severe disabilities is seeing people misunderstand and mistreat her, or people like her. On buses going to summer camps, or in classrooms, people would purposefully act disabled or 'crazy' to get attention and make people laugh. The word 'retarded' (which I absolutely despise hearing nowadays) was thrown around like you wouldn't believe. History books would tell me of cultures that would isolate and even execute people with disabilities who were then thought of as 'wasted space.' It was made very clear to me early on that, in this world, what is considered normal is very black-and-white. I'm normal, Madeline isn't. I would experience this even through my friends, whose younger siblings would play with us and come out on excursions with us, while Madeline had to stay in her room (which had originally been our dining room in our old house). And it made me mad, and sad. 

       Surrounded by this negativity growing up, I was extremely dismayed by seeing my sister subjected to ostracism, without being given the opportunity to stand up for herself. In other words, she didn't have the voice to stand up for herself. And it was just devastating for me to see.  I'd go home and hang in her room and wonder how people could be so wrong about a person, or group of people for that matter. People still ask me sometimes "What's wrong with her?" The way I interpret this question is, what happened to her body, not what happened to her -- sure, Madeline can't talk and communicate like others can, and she is fully dependent on the care of her nurses to do just about anything, but by no means does that make her any less of a person. Madeline communicates through touch, and smiles, and arm tickles, and hand holding and and eye contact and laughter. She experiences the world through tactile learning, and gets the same amount of joy from being in or near the water as my mom and I do.  

       I'm about to turn 21 this year, Madeline 19. And though I've just written about her, there is so much more yet to be experienced and learned from loving her. I feel like I've barely even scratched surface of describing all that she is in essence and form. She is an absolute bad-ass, and if I could wish for one thing from people that don't know her, it is that instead of being confused, be curious. Don't judge what you don't understand, or you end up missing out on a great learning opportunity. Above all though, stand up for the people and things that you love that may not have a voice of their own. Everyone deserves to be listened to, regardless of who does the talking. 

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