When I was four-years-old I was told I was getting a baby sister. Truth be told, I was devastated. I had been the baby of our family for four years, soaking up every moment and connected to my mother’s hip every second of every day. I remember the tears when she would dare run an errand without me, leaving me with a sitter – who did she think she was? So to share my spotlight did not bode well for me. Little did we know the whirlwind we were in for. Emily was born December 20, 1996 a day that changed our world in ways we didn’t even realize at the time. Emily is part of 4% of Down syndrome cases where there is no indication during pregnancy, my mother had a seemingly “normal” pregnancy and it was discovered at birth that Emily had Down syndrome and a congenital heart defect, which would require intensive care. Emily has Translocation Down Syndrome which is the rarest form of Down syndrome – in the genetic sense. There are no major differences that arise from Trisomy 21 or Translocation cases; it is simply how the chromosomes attach to one another in the individual’s genetic makeup.
Due to her health complications at birth, Emily was taken out of the room, my parents unknowing of what was taking place. It all happened so fast. Later, my mother was approached by the physician who stated that her daughter was born with Down syndrome and a heart defect; she was born with holes in her heart that will need repair for years to come. My family was taken aback at the lack of insight leading up to birth, yet the moment their eyes met hers it was like nothing else could ever matter. This was not the case for me. I sat at home furious that this new baby was taking my parents away from me, they spent time at the hospital and we spent time with relatives. Emily was a calm baby, rarely crying, yet at four-years-old I told my parents she must be broken or they took the wrong baby home and we needed to return to the hospital and change her for the right one. I felt separated from my parents and clearly wasn’t coping well with these changes. But this all changed in an instant.
One day, we’re not sure what changed in this moment, but I got out of my bed and went into Emily’s room, I climbed into her crib and never looked back. We’ve been inseparable ever since, any worry I had over being a big sister dissolved. I then daily would wake up and rush to be the first one in her room, laying with her in her crib singing and playing games together. I wish I could vividly remember being 4-year-old and watching this newborn baby come into my life, but I simply can’t. I now can’t remember a time when I haven’t been consumed by Emily in the best way possible.
I truthfully cannot imagine a life without Emily, I can’t imagine not celebrating a ‘sistership’ every single Tuesday, I can’t imagine a birthday dinner without a speech dedicated to me (even when it’s not my birthday), or seventeen phone calls each day. I can’t imagine life without belly laughs and sister fights. For years, we told people we we’re twins and would giggle, secretly wishing we were. I also can’t imagine life without controlled chaos the ongoing “where’s Emily”, her stripping naked at the pool deciding she’s ready to swim, spray painting a brand new car with “heart mom love” or locking herself in a snack closet at camp for extra goldfish. I am often asked this though, what this life is like for me – truthfully it’s impossible to answer because I know nothing else. I also know now as an adult I wouldn’t want to know anything different than what I have with Emily.
In my experience, I have often been told “oh you must have chosen to be a social worker because of your sister”. For years nothing bothered me more than this statement. I can’t quite pin down what bothered me most, that because Emily is disabled I must be drawn to serving others, or a lingering ignorance that mental health is the same as developmental disabilities. I always felt in the tone of these statements there was a pity, that my life must’ve been burdened therefore I forever am drawn to those burdened in some facet. However, in recent years, whether this comes with age or insight, I have grown to find grace in this. I’ve realized all Emily has given me; the unmatched patience I’ve developed, the willingness to “roll with it”, how to have conversations in a different manner, how to meet someone truly where they’re at. But most importantly, I realize now that seeing someone as a person, first, is not an innate feature of being human; it’s learned and some individuals never get to this level of understanding of one another. Emily has graced me, by being the center of my world, with looking at people for who they are before what they are labeled as. For this, I am eternally grateful and could truly never repay her. As I enter another year of life, I come to learn that she has had the greatest impact on who I have grown into, she has led me to work that I feel such passion for, opportunities in my community that make my heart sing and relationships that grow stronger with age.
This is not to say that our experience as sisters has been the “norm”. Since childhood I have taken on a caretaker role in her life, I could tell you everything health-related that she’s experienced, I can read her like a book and I can care for her independently. I choose my relationships based upon her, as we are a package deal. Many people view these relationships as burdensome, I view it as a blessing, as if my maternal instincts that I didn’t know existed took over in childhood and I had a new understanding of what loving someone truly means. I can openly and honestly say the love I share with Emily is stronger than my love for anyone else. We have a bond that is not stereotypical of siblings and I can’t imagine not experiencing that. This is not to say we haven’t had our challenges. Emily approached me when she was probably 8-years-old, I will never forget this moment, we were baking chocolate chip cookies, she looked at me casually and said, “hey sis, what’s wrong with me anyways”. I almost fell over. I was frozen, no concept at 12-years-old of how to manage this conversation. I called my mom crying because I couldn’t fathom that she believed there was something wrong with her. We had a conversation with Emily following this that there is nothing wrong with her, but that she has Down syndrome which can make some parts of her different than us, but never less. She looked at us, pointed to the Down syndrome magazine and asked if that’s why her face looks like theirs and not ours. Again, my heart broke. The kids we grew up with, asking what’s wrong with her, why is she like that, why does she do that, etc. Pushing us in directions we never saw coming. My brother actually pushed to punching a peer on the school bus who refused to stop mocking “retards”. Emily made me feel like our house was crazy, she drove our car into a hockey net because she wanted Dunkin’ Donuts, she got hide-and-seek banned from our house because she hid in the dryer and the trunk of the car, and she learned to disable the security system on the house so she could essentially break into our neighbors house to be first to say good morning before they left for work. There are quite literally no secrets in our family, anything Emily knows, the world knows. Oh, the stories we could tell. Yet, I look back, and I want nothing else. I don’t want a life of rigid structure, or lacking in laughter. I want the howling laughs we had as Emily puts on a play and I want the moments of pure love and appreciation when she continues to defy the odds.
I want the genuine nature of relationships, I want the brutally honest truth, I want the silliness and I want the hard times. I want these things because they’re what I know with Emily and what I am ever grateful for. Times can be hard. Watching Emily struggle with acceptance in our community has been a huge burden on our family, seeing kids want the “photo op” with the token disabled kid for Instagram likes, it’s a real thing. Watching her crave relationships and feel isolated is one of the hardest things to watch. Watching her struggle with her health and carry the concern, is hard. Watching her struggle to communicate and revert to old behaviors is hard. Seeing her be treated with disrespect is hard. Having families ask if their child can catch this from her, is hard. Having people stare at us, is hard. Having people say they’re sorry for us, is hard. But, watching her excel in her education is remarkable. Watching her greet customers at her job with maturity and grace is astonishing. Watching her surprise people with her natural charisma and always appropriate manners is beautiful. Learning alongside her as she struggles to grapple with concepts such as death, as we explore these concepts together. Watching her continue to grow into an ever-changing woman with grace, compassion, a stubborn mindset and plenty of questions is more than I could ever ask for.
The way I watch Emily navigate live life helps me to shake myself from time to time. I realize the things I allow to consume me aren’t actually supposed to consume me, I see her live life in this way that is so pure and full of heart. She is unconditional in all she does. She loves unconditionally and trusts unconditionally. The experience and knowledge gained by having a sibling with Down syndrome, from the research, makes children more accepting and appreciative of differences. These children tend to be more aware of the challenges those around them are experiencing, and are often more advanced with their wisdom, insight and empathy. A study conducted in 2011 asked brothers and sisters about their feelings and perceptions towards their siblings with Down syndrome. More than 96% responded they had affection towards their sibling with Down syndrome, and 94% of older siblings expressed feelings of pride. Among older siblings, 88% felt they were better people due to their sibling with Down syndrome. My life as a sibling of a person with Down Syndrome has not been a life overshadowed, or a life filled with worry, or a life restricted. It has been a life enriched, a life open with possibilities, a life filled with a little more happiness and a lot more laughter.
Here are some things to do when you see someone who may be different than you:
Smile, especially when you’re tempted to stare.
Allow your child to ask questions, don’t hush them, rather embrace their curiosity and allow for growth in these moments.