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Special Needs Siblings: Emily Spears

Meet Emily, middle sibling to Amy and Ben who were both born with FoxG1 - the same rare genetic condition as Meredith from the MTeam. We shared their mother Ann’s perspective recently, and she told us a lot about Amy and Ben and life as a family with special needs. Now, we hear from Emily, to find out what it’s like to grow up with two siblings on the severe end of the FoxG1 spectrum.

 
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MTEAM: Beyond what you've written in the essay, what are some of the other ways that being the middle sister to Amy and Ben impacted the way you grew up as compared to others your age?
EMILY SPEARS:
The one thing I remember thinking about over and over again about being Amy and Ben's middle sister was, "Why me?" It was very difficult growing up and watching my friends relationships with their siblings, and even though this is not a flattering word for me to use about myself, I was jealous. At the time, I felt like I was meant to have an older sister and everything that came with that; I wanted to steal her clothes, ask her about school, have her drive me to my friends’ houses, watch her go on her first date. In my mind, my parents wanted me to have an older sister and younger brother, and "it wasn't fair" that I didn't get to have those "normal" relationships. And while today, as a 29-year-old, I understand that this is not how life works, and I love and appreciate the relationships I do have with Amy and Ben, it is still difficult not having those "normal" relationships.

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What wasn't difficult was living my day-to-day life. While I can look back and think of certain days that were challenging, my overall memory of my childhood was easy, which my parents deserve full credit for. Even with two siblings who required full time care, I don't ever remember my parents letting that stop me from doing something I wanted to do. I played sports and they were at every game. I had friends who lived 45 minutes from me and they drove me there and picked me up. I needed help with my math homework and my Dad painstakingly worked through every problem with me. My parents also shielded me from being my siblings caregiver; to them, that was their job and not mine. Yes, I was their sibling, and I was expected to help, but I probably still don't know how to do half the things my parents do on a day-to-day basis to care for Amy.

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Over everything else though, my parents always made me feel special. Every Thursday night from the time I can remember until probably sometime in middle school, when life gets a little more hectic with homework, sports, etc, my parents and I would go on date night - just the three of us. I think it was good for me to have a couple hours a week when I had both of them on my own and I got both of their undivided attention, without being distracted or pulled away by Amy and Ben. Honestly, this is probably good for every child whether or not their siblings have disabilities, but especially so if they do.

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MTEAM: What are some of the ways in which you've bonded with your siblings over the years?
EMILY SPEARS:
Music and swimming. Unquestionably, those are the two things that Amy, Ben, and I got to bond over and enjoy the most, and luckily for us they were both abundant in our house. If you drop by our house, it doesn't matter what time of day it is, there will be music playing, and we don't discriminate on genre. From Jay-Z, to Dixie Chicks, to Shakira, to Nat King Cole, we’ve heard it all and loved it all. Music has always made Amy and Ben come alive, and if you've ever seen their joy and laughter, you know it is contagious. 

Swimming is our second great love. My parents put a pool in our backyard, I think when I was about 18-months-old, so we grew up swimming all summer long. I can't say that Amy and Ben love the "cold pool" as we affectionately call it, but they love the hot tub. For them, it is a release from their wheelchairs, and something that we got to enjoy together as a family.

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MTEAM: What would you say to other people who are currently struggling like you did in the beginning with what it means to be a sibling to someone with special needs?
EMILY SPEARS:
I know that it's hard, and confusing, and frustrating. Even though sometimes it may feel like you are alone in your struggle, you are not! There are other kids just like you whose siblings are not "normal" - find them, it helps! 

Above all else, look at how your sibling looks at you - he or she adores you! You are their world, their everything! Nobody looks at me or loves me in the way that Amy and Ben do. Their love for me is truly unconditional. They are never mad at me. They are never disappointed in me. They are never annoyed by me. They love me through and through, no matter what, always! They think I am perfect. And having someone look at you like that is a rare and wonderful gift. 

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Below, Emily shared an essay that she wrote in her senior year of high school in response to a prompt on Vanderbilt’s college application about diversity with her story of being Amy and Ben’s sister:

“I am the middle child with two severely mentally and physically handicapped siblings. From the moment I was born, I had to deal with diversity head on. I have endured the stares that came from strangers as I pushed either my brother or sister’s wheelchair through the mall. I have experienced a school where every child attending has some sort of disability. But most importantly, I have seen what happens when people stop staring and accept those like my brother and sister.

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As a young child, when my mom and I would take my siblings to the mall, I would more often than not leave the mall wishing that my brother and sister were “normal”. I always found it unfair that God chose me to deal with the difficulties that my brother and sister created. Every time my family would pass the wishing fountain in the mall, I would ask my mom if I could throw a penny in and make a wish. Of course, my mom would always let me, assuming that a child of six or seven would be wishing for a pony or a new Barbie, and after all, it was only a penny. But, without fail, every time I threw a penny in the fountain, I would wish for the same thing - that a miracle would transform my brother and sister into the siblings that I always wished I could have. Of course that never happened. As I grew older, I stopped throwing pennies into the wishing fountain - not because I realized that my wish could never and would never come true, but because that was no longer my dream.

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I believe that there is something in everyone’s lives that defines who they are as a person, whether it be a defining moment, accomplishment, or personal circumstance. In my case, my brother and sister are the people who have made me who I am. I realize now, after all those wasted pennies, that without them I would be a totally different person. Even though my siblings have provided endless hardships for my family, what is more important are the endless smiles and laughs we have gained in return. There is something about the way my brother’s smiling gaze follows my every move and the fit of giggles that some days my sister can’t seem to suppress that makes all the tears they have caused me seem unimportant. It has never been easy being their sister, but in the end it has always been worth it.

 
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I often find myself wondering what exactly it means to be “normal”. Is it that you are about average at everything you do? Or are you simply “normal” because you fit into the standard equation of what a human being is supposed to be? If either of those two cases describes what it means to be normal, I have no idea why I would have wished my siblings to be “normal”. Having handicapped siblings is what taught me respect and appreciation for all facets of my life. They are what taught me to be open to the world around me. Accepting the fact that my siblings are who they are for a reason is what made me who I am today. Because of them, I am more accepting of diversity. I have learned that diversity is not something to be scorned or shied away from; it is something that should be embraced because you never know what kind of affect those people could have on you - in fact, they may just shape who you are.”

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Candyce Carragher