Michele

By Mandy Boreskie

Your flaws make you who you are; don’t deny your imperfections, embrace them. This is the root of Mandy Boreskie's biographical tale which recounts her mother’s life and struggles with a very rare and deadly syndrome called “Sturge-Webbers”, as seen through multiple perspectives and the eyes of the one man who knew her best.

• Language: English
• Publisher: Mandy Boreskie
• Release date: Jan 9, 2017
• ISBN: 9781370739295

Mandy Boreskie

In 2009, shortly after graduating her B.A., Mandy "Bo" Boreskie began writing an online blog titled Michele, which was about her mother’s life and struggles with a very rare and deadly syndrome called Sturge-Webers.The blog was a compilation of research, personal stories and interviews with close family members, mainly Bo grandfather on her mother’s side. When Bo’s grandfather passed away she was devastated and took a year and a half long break from writing.The blog was later completed when Bo added Part III to the story, detailing the loss of her grandfather. The story took approximately four years to complete. The blog has received almost 10,000 visitors since it’s creation and has since been turned into a book by the same title.Shortly after the completion of the book Michele, Bo began adapting the story into a feature-length screenplay. The film is an inspirational drama with an optimistic tone; after being deemed an unfit parent, Michele struggles to get her life on track, rising above her disability in order to get her children back.The theme asserts that our flaws make us who we are and we shouldn’t deny our imperfections; embrace them. The Michele script has come in the quarterfinals of several well known international screen writing and film festivals and competitions including Scriptpalooza and the Toronto Reel Heart International Film Festival. Production planning for the film begins in 2017.The Michele blog, script and feature screenplay were all dedicated in loving memory to Bo’s grandfather, Michael Edgar Beaudoin.This book is currently only available in softcover.

Book preview

MICHELE

Through a daughter’s eyes

By Mandy Boreskie

Copyright © 2016 Mandy Boreskie

All rights reserved.

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DEDICATION

I dedicate this book to everyone it touches personally, especially my grandfather who wished he could write it himself but felt he could never find the words.

TABLE OF CONTENTS

Dedication

Part I: The Facts

Part Ii: Grandpa Speaks

Part Iii: I’m Here

About The Author

Note From The Author

Connect With Me

PART I: THE FACTS

The woman in the photo is Michele Theresa Beaudoin, firstborn child to Helen and Michael, sister to Kelly and Jenifer, and mother to Maryann, Michael, and me. The caption under the photo reads, MICHELE TAKES advantage of the Salvation Army’s Men’s Hostel, where the needy can now get soup, coffee and bread nightly, taken by Windsor Star photographer Derek De Bono. The article explains that thanks to this new program, Windsor’s needy no longer have to sleep with empty stomachs…, and goes on to detail the difficulties endured by these individuals who are left out in the cold-winter months with no shelter, heat, food, or money. It illustrates how, for the most part, they have become society’s forgotten ones.

As the story goes, the journalist sent to the Salvation Army to write the report that evening was so overcome with emotion in viewing this poor dear woman, sitting all alone, that she insisted the photographer capture her photo immediately. It was this photo that landed on the doorstep of my grandparents’ home the following day. Even now, decades later, you can still see my grandfather’s eyes well up as he recalls that morning: I was heartbroken…I didn’t understand. She didn’t have to be there, you know. After a long pause he adds, She was always welcome with us.

Although from the picture you can see what appears to be a lost and lonely woman, in desperate need of a helping hand, what you can’t see is her birthmark. By the time this photo was taken, Michele had undergone enough laser surgery to fade a large port wine-coloured birthmark that went from her forehead and upper eyelid down, covering almost half of the left side of her face. But Michele’s birthmark wasn’t just that; it was an extra layer of blood vessels over the surface of her brain, also known as an angioma, and it was the first indication that she was born with the rare disease Sturge-Weber Syndrome (so named after the doctors who first described it in the late 19th century).

Sturge-Weber Syndrome is a condition that starts very early in pregnancy during the baby’s development in the womb. It has been hypothesized that somewhere between six to nine weeks of pregnancy, while the tissue that will eventually form the skin and brain are still closely related, a network of blood vessels continues to develop instead of separating and causes an extra layer of blood vessels over the surface of the brain. The reason for such abnormal development is undetermined, but it has been asserted that it is not a genetic condition or a result of anything done or not done during pregnancy. Despite these facts, however, it’s evident that my grandparents could never help but feel somewhat responsible for my mother’s disabilities; after all, she was their child.

By her first birthday, Michele was experiencing anywhere from a few to fifty seizures a day—one of the many symptoms of the syndrome associated with the angioma. Being one of the first of three cases of Sturge-Weber Syndrome ever diagnosed in Canada, Michele was an anomaly to doctors, and it wasn’t long before she became a guinea pig for their experimental procedures and drug testing: tests which ultimately confirm that treatment for Sturge-Weber Syndrome is merely symptomatic at best.

With no cure in sight, Michele was eventually prescribed anticonvulsant medications to control the seizures, as well as educational therapy to assist with her developmental delays and handicaps. Later, when Michele was about the age of three, doctors even suggested removing the damaged half of her brain. This meant she would need to relearn everything, such as walking, talking, eating, and other everyday functions individuals like you or me take for granted. (There was a great possibility she might never relearn or learn anything ever again). Under the stress of the situation and in accordance with doctors’ recommendations, my grandparents considered letting Michele have the surgery. After some more careful consideration, however, they decided that if Michele had made it this far against all odds, certainly a girl with such a strong and enduring spirit could make it even further without the surgery. My grandparents’ intuitions were correct, and despite the fact that she was never expected to live past the age of two, let alone give birth to three children, Michele is still alive today.

I sometimes try to imagine what it must have been like for little Michele growing up. It wasn’t as though she could hide her syndrome; it was permanently marked on her face for all to see. It’s hard to comprehend what she could possibly have felt when she saw the curiosity rooted in people’s eyes each time she was introduced. What questions must she have endured: Are you ok? Did someone hit you? What happened to your face? Could you possibly conceive watching a child shy away from you in fear, turning to their parents and whispering, What’s wrong with her?

However I can only speculate and attempt to make connections about my mother’s life based on my grandparents’ stories because, well, I never really got to know her. I’ve lived with my mother’s parents since I was two years old (along with my sister, who was four, and my infant brother). My mother detested my grandparents for this. She blamed them for the distance that was placed between her and her children, despite the fact that it was the courts that had ultimately determined she was unable and unfit to be a parent. Michele disappeared for the most part during these angry years, making only small, brief appearances here and there.

As I came into my teens, I started to interpret her absence throughout my life as abandonment; I resented her. I retaliated against her (as well as everyone else) by distancing myself. If I didn’t let anyone in, then no one could ever leave me again, I rationalized. But I guess I was wrong; as time went on, the visits became fewer and fewer, until they simply stopped altogether. Michele moved far away with a new man, and I lost all contact. I feel ashamed to admit it, but sometimes I think I even forgot she existed.

It wasn’t until I began approaching my early twenties that I felt a real sense of loss for Michele (and my father for that matter). My anger towards them was fading; the abandonment issues that had been a