Mikey and Me: Life with my exceptional sister by Teresa Sullivan

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“As I look back, I realize that I never saw other children like Mikey in public places. Many were in institutions, and perhaps the families who kept them chose not to venture into the outside world.”

Times were different when Teresa was growing up. Inclusion was nothing like it is today, and let’s face it, it could be better now too. This is an intimately painful revelation into what it was like growing up with an exceptional sister, one with severe disabilities. The family was admirable in their efforts to keep their beloved daughter Mikey in the family home as long as they could, but it wasn’t without hardship on each family member. The hardest parts of the book to read involved the abuses that happened to Mikey while she was institutionalized, despite her family’s fight- the reality is the person who can’t speak for what occurs suffers the most and is blamed for the disturbing sickness inside others. We don’t often speak of the difficulty on siblings, because in a sense, Teresa and other children like her are born into care-taking. It’s a grown up responsibility that many adults shirk. The struggle of loving your sibling and resenting them is incredibly heartbreaking. Teresa didn’t have the attention so many children need, and as much as she understood why on a mature level, it absolutely had damaging effects. It’s no one’s fault, the parents certainly tried their hardest, but caring for someone such as Mikey is a never ending job, it requires the family to be constantly on alert, more than two steps ahead. You cannot doubt their love, but it was obviously mentally and physically exhausting. I cannot imagine how much harder in times with less compassion. Back then, it was still somewhat hidden, treated like a shameful issue, families treated to freak show mentality.

How can the reader not be touched by Mikey? What sort of life is it, unable to truly communicate your needs, suffering?  Trying to navigate a world you can’t understand, abused by other patients, and lashing out against those who love you for reasons you truly cannot help. The marriage between Teresa’s parents was beyond strain, the demands of their life didn’t leave time for romance, intimacy any relationship beyond worrying and caring for their daughter. A poignant moment was the fantasy young Teresa had, watching the Helen Keller movie, the hope that maybe she could just teach her in the same way, breach the communication barrier and then the plummeting depression of reality, too much to bear. It’s no wonder that later in life Teresa plummeted herself. Drugs as escape, running away from the calm of home, where no one seemed much invested. A best friend like a sister she wished Mikey could have been later souring, bringing out the worst in her and later- an injury that terrifies her, that brings her  own brain closer to Mikey’s. The terror of losing her own function! This isn’t pretty friends but it is unflinchingly raw!

I think of the courage it takes for such a family, and the horrific reality of how it feels to have to give your child over, a parent’s true nightmare. Mikey kept them bonded and the calm is almost louder than the noise when she is no longer home. How do people keep faith? Where do you find hope when doctors have nothing to offer, when you know more about your child/siblings needs than any facility? For some people, the happy ending never comes, there aren’t any trail blazing medical breakthroughs that save them. This was the truth for Mikey and Teresa. Take heart, Teresa did glimpse happiness in her sister, be it the spinning, or moments of laughter. Never doubt Mikey’s family loved her, but this is a real look into what the family went through, Mikey included, back when no one bothered to understand only stared and judged. You didn’t have the internet to connect easily with other families like yours, nor support. Society just put them away, out of sight, out of mind but this is a family that handled what they were given in life with much grace. Such a sad story.

Publication Date: August 29, 2017

She Writes Press

 

 

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